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One size fits none: theorizing weight management in the everyday lives of adults with serious mental illness
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One size fits none: theorizing weight management in the everyday lives of adults with serious mental illness
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ONE SIZE FITS NONE: THEORIZING WEIGHT MANAGEMENT IN THE EVERYDAY LIVES OF ADULTS WITH SERIOUS MENTAL ILLNESS by Abbey Lynn Marterella A Dissertation Presented to the FACULTY OF THE USC GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree DOCTOR OF PHILOSOPHY (OCCUPATIONAL SCIENCE) August 2010 Copyright 2010 Abbey Lynn Marterella !!" " " Acknowledgments It is with pleasure that I take this opportunity to acknowledge the numerous people who have contributed to this dissertation. Foremost, I wish to thank the participants who generously volunteered to take part in this study. Their courage and willingness to share their perspectives with me was remarkable. I trust that my dissertation honors the complexity of weight management in their daily lives and serves as a conduit to understanding their experiences. I am deeply indebted to my dissertation committee chairperson, Dr. Jeanne Jackson; my dissertation committee members, Drs. Florence Clark, Ann Neville-Jan, and John Brekke; and my guidance committee member, Dr. Donald Polkinghorne. They were immensely supportive and I cannot overstate the importance of their insightful comments and stimulating questions throughout the dissertation process. Although their collective expertise was invaluable, particular contributions of each committee member deserve special mention. Dr. Jackson provided opportunities for engaging in philosophical discourse, which aided me in the process of refining my ideas about emerging conceptual categories. Her enthusiasm about my study served as a source of encouragement and rejuvenation. Dr. Clark’s superior knowledge and commitment to intervention development research inspired my interest in this field of study. I am deeply grateful for her assiduous mentorship throughout my doctoral work. Dr. Neville-Jan generously shared valuable resources and our many conversations enriched my understanding of disability studies. Dr. Brekke was instrumental in facilitating my entrée into the community mental health system and his comprehensive expertise in mental health !!!" " " research supported my growth considerably. Dr. Polkinghorne provided valuable guidance on the study design and mentored me extensively in qualitative methods and philosophical history prior to his retirement. Throughout the course of my doctoral training, his teachings helped to shift my viewpoint in myriad ways. It has been my great honor to work with and learn from each of these exceptional scholars. My family and friends deserve special recognition for their enduring support throughout my graduate studies. They instilled confidence when I wavered and brought laughter to arduous days. I am beyond grateful for their constant encouragement, compassion, devotion, and generosity. ! ! Table of Contents Acknowledgments ii List of Tables vii Abstract viii Chapter 1: Introduction 1 Background to the Problem 1 Evidence to Support the Need for this Study 6 Purpose of the Study 10 Research question and overarching aims 11 Significance of the Study 12 Chapter 2: Literature Review 17 Historical Treatment of Severe and Persistent Mental Illness 18 The National Call to Action on Health and Wellness for Mental Illness 21 A Qualitative Textual Analysis of a National Approach to Health 22 Weight Management: Comparing Approaches in Two Populations 26 Overview of weight management programs for the general population 26 Overview of weight management programs for adults with SPMI 28 Current Practices in Weight Management Intervention for Adults with SPMI 30 Tailoring intervention 32 Synthesis of intervention program foci for adults with SPMI 37 Everyday Life: Personal Perspectives and Contributing Factors to Weight Gain 39 Personal perspectives on SPMI and weight management 39 Factors related to weight gain in adults with SPMI 42 Occupational Therapy for Excess Weight Treatment in Adults with SPMI 44 Conclusion 47 Chapter 3: Methods 49 Methodological Approach 49 Theoretical Foundation and Rationale 50 Participant Selection Strategies 55 Participant Description 59 Data Generation 65 Relationship and knowledge development in qualitative inquiry 66 Focus group interviews 70 Semi-structured interviews 71 Participant observation activity visits 73 ! ! Data handling and transcription 74 Data Analysis 76 Coding 76 Fieldnotes 78 In-process memos 79 Interpretive Sufficiency of the Study 79 Ethical Responsibility 82 About the Researcher 84 Conclusion 91 Chapter 4: Desire for Change and Obstacles to Weight Management 92 Embodied Encumbrance: Factors Affecting a Desire for Weight Change 92 Fear of health problems experienced or anticipated 94 Stress related to appearance and impact on social life 95 Frustration with engagement in everyday activities 98 Barriers to Weight Management: Stigma, Survival, Support and Services 101 Weight-ism: Size discrimination and internalized views of self 101 Navigating everyday needs: The survival struggle 103 Weight management recommendations: One size fits none 107 Service changes: The absence of activity 113 Conclusion 118 Chapter 5: Personal Stories 120 Laura’s Story: “I’m a responsible citizen now” 120 Obtaining psychiatric stability results in a weight problem 123 Hidden barriers to weight management 125 Summary 127 Gavin’s Story: “I don’t know how to do my weight control” 128 Shifting circumstances and fluctuating progress 129 Needing information despite a disciplined approach to daily life 130 Summary 134 Susan’s Story: “I just need to find a happy medium” 135 A physical health problem emerges 135 Trapped in an unsafe neighborhood 137 Attempting mindset change for body change 138 Summary 139 John’s Story: “My fear has been stronger than my desire” 140 Feeling unattractive and socially awkward 140 Harboring negative views of self and others 141 Dietary choice or lack thereof 142 Motivation and lack of weight management support 144 Discomfort and desire: The lesser of two types of misery 146 ! ! Summary 148 Conclusion 149 Chapter 6: Domains of Concern and Intervention Implications 150 Domain 1: Addressing Physical Health Issues 152 Accessing information from providers and asserting oneself effectively 156 Monitoring health concerns and controlling illness-related symptoms 157 Domain 2: Maintaining Psychological Well-Being and Managing Stigma 158 Controlling stress and symptoms through activity 159 Managing overwhelming emotions and developing confidence 161 Identifying stereotypical views and developing a complex notion of self 163 Domain 3: Engaging in Valued Activities and Connecting with Others 165 Exploring personal ideology and approach to activity participation 167 Establishing meaningful relationships 169 Advocating for needed programs and services 170 Domain 4: Providing for Everyday Needs 172 Examining safety issues and acquiring independent living skills 175 Developing knowledge of nutrition and activity 177 Maintaining financial stability 178 Intervention Implications for Adults with SPMI and Weight Management Issues 179 Summary of this Research 185 References 186 Appendices 201 Appendix A: Recruitment Flier 201 Appendix B: Informed Consent 202 Appendix C: Capacity to Consent Evaluation Form 206 Appendix D: Focus Group Script 208 Appendix E: Individual Interview Script 211 ! "## ! List of Tables Table 1: Overarching Themes and Subcategories Related to Weight Management for Participants with SPMI 92 Table 2: Domains of Concern and Subdomains for Addressing Weight Management Issues in Adults with SPMI 150 viii Abstract Weight management problems pose a grave threat to the health and well-being of adults with serious mental illness. In fact, overweight and obesity rates for this population are estimated to be up to twice that of the general populace. Despite the urgent need to address this issue, few studies have been undertaken to develop effective interventions tailored to the specific life circumstances implicated in the poor weight management of this group. The present study constituted a first step for the future development of an intervention designed to enable better weight management in adults with serious mental illness. Using an overarching disability studies conceptual framework, I employed qualitative research methods to discern the complexity of life circumstances and factors that influenced weight management difficulties for these individuals. I reasoned that by developing a detailed understanding of the particular dilemmas these adults had in managing their weight in everyday life, I would subsequently be able to develop an effective intervention approach. Fourteen participants engaged in focus group interviews with a subset of four participants taking part in individual semi-structured interviews and activity visits. On the basis of data generated, four overarching domains of concern related to weight management emerged, including: (a) addressing physical health issues, (b) maintaining psychological well-being and managing stigma, (c) engaging in valued activities and connecting with others, and (d) providing for everyday needs. Additionally, eleven interrelated subdomains were identified through which the problem areas could be redressed. ix This four-pronged typology with its associated subdomains provides a data-driven conceptual foundation for the future development of a Lifestyle Redesign® weight management intervention for adults with serious mental illness. The findings revealed that macro-level sociopolitical and socioeconomic factors permeated the weight management experiences of this population. As such, it became clear that the intervention approach to be developed must incorporate system change strategies relative to the lifestyle domains that comprised the typology. 1 Chapter 1: Introduction Background to the Problem Mental illness is a pervasive problem in the United States (National Institute of Mental Health, 2006). It is estimated that in any given year 22.1% of American adults have a diagnosable mental disorder, and approximately 28% of the entire population has a diagnosable mental illness or substance abuse disorder (National Institute of Mental Health, 2006). According to the 1990 Global Burden of Disease Study designed to compare the burden of disease across conditions, mental illness “accounts for over 15% of the burden of disease 1 in established market economies, such as the United States” (National Institute of Mental Health, 2001, ¶1). Data from the study further project that by the year 2020, “with the aging of the world population and the conquest of infectious diseases, psychiatric and neurological conditions could increase their share of the total global disease burden by almost half” (National Institute of Mental Health, 2001, ¶1). It is estimated that of the American adult population diagnosed with a mental disorder, 5.4% are considered to have a serious mental illness 2 (SMI) and approximately half of those with SMI are identified as having a severe and persistent mental illness 3 ! 1 Burden of disease refers to lost years of healthy life regardless of whether the years were lost to premature death or disability. Mental illness was found to have a greater burden of disease than that of all cancers. 2 Serious mental illness (SMI) in adults as defined by section 1912(c) of the Public Health Service Act includes persons ages 18 and over who have a diagnosable mental, behavioral or emotional disorder, as indicated by Diagnostic and Statistical Manual criteria, which results in functional impairment substantially limiting one or more major life activities. Substance use and developmental disorders are excluded unless occurring with another diagnosable SMI. 3 Severe and persistent mental illness (SPMI) is used to denote a subcategory of SMI, which includes individuals most severely affected. 2 (SPMI) (U.S. Department of Health and Human Services, 1999). For those with SPMI, conditions such as schizophrenia, bipolar disorder, severe forms of depression, panic disorder, and obsessive-compulsive disorder interfere with areas of social functioning and daily life activities, with the most seriously affected receiving disability benefits from the Social Security Administration (U.S. Department of Health and Human Services, 1999). In the United States, community-based approaches to health and wellness for those with SPMI are particularly important due to legislative changes that moved people with psychiatric disabilities out of restrictive hospital settings in the last half of the 20 th century (Marty & Chapin, 2000). The lives of people with SPMI are complicated not only by symptoms of psychiatric illness and sociopolitical factors limiting community participation (Corrigan, 2003; Corrigan & Kleinlein, 2005;Corrigan & Penn, 1999; Davidson, 2003; Link, Phelan, Bresnahan, Stueve, & Pescosolido, 1999; Phelan, Link, Stueve, & Pescolido, 2000), but also by a unique constellation of physical health issues resulting in excess mortality (National Association of State Mental Health Program Directors Medical Directors Council, 2006). People with SPMI may have up to a 20-25% decrease in life expectancy over the general population and research indicates that premature death is often linked to cardiovascular disease and metabolic disorders (Cohn, Prud’homme, Streiner, Kameh, & Remington, 2004; Henderson et al., 2005; Hennekens, Hennekens, Hollar, & Casey, 2005). Excess weight is especially prevalent for people with SPMI leading to physical conditions associated with premature death such as, displipidemia, diabetes, coronary heart disease, stroke, and hypertension. Thus, weight 3 issues present a pressing concern for morbidity and mortality in this population (Casey et al., 2004; Connolly & Kelly, 2005; Millar, 2008). Increasing prevalence of overweight and obesity 4 in adults is a worldwide public health problem (Centers for Disease Control and Prevention, 2007; World Health Organization, 2006). Estimations of global obesity in 2005 approximated that 400 million adults were obese, and the figure is projected to rise to 700 million by the year 2015 (World Health Organization, 2006). The United States is the global leader in obesity among developed nations. Approximately 65% of American adults are overweight or obese and the percentage is expected to rise to 75% by 2015 (National Association of State Mental Health Program Directors Medical Directors Council, 2006; National Center for Health Statistics, 2006) Excess weight is an even greater concern for people with SPMI, as evidenced by obesity rates for this population estimated to be up to twice that of the general population, ranging from 40-60% (Millar, 2008; Wirshing, 2004). Excess weight is reportedly more prominent for females with SPMI than males (Allison et al., 1999; Dickerson et al., 2005; Homel, Casey, & Allison, 2002); however, a recent study found that obesity levels among men with SPMI might be underestimated when BMI is used as the sole indicator (Sharpe, Byrne, Stedman, & Hills, 2008). ! 4 Overweight and obesity are often determined by body mass index (BMI = weight in kilograms divided by the square of height in centimeters). A BMI ranging from 25 to 29.9 is considered overweight and a BMI of 30 or greater is considered obese. Waist circumference is an emergent measure of adiposity distribution, as BMI alone may overestimate or underestimate adiposity in particular populations (e.g., muscular persons, older adults) (Palamara, Mogul, Peterson, & Frishman, 2006). 4 Literature cites that excess weight for this group is attributed to multiple factors such as weight-gain side effects of second-generation antipsychotic medications (Casey et al., 2004), sedentary lifestyle (Daumit et al., 2005), poor diet (Dixon, 2003), and lack of access to medical care (Beebe, 2008). Poor socioeconomic status, although not cited as frequently as other causes for excess weight in SPMI populations, is also recognized as a general contributing factor to weight management problems (Kumanyika et al., 2008). Individuals that are overweight or obese, including those with SPMI, are at increased risk for a vast number of physical health concerns. According to the Surgeon General’s Call to Action to Prevent and Decrease Overweight and Obesity, some of these concerns include type II diabetes, heart disease, stroke, hypertension, gall bladder disease, osteoarthritis, sleep apnea, asthma, various cancers, high cholesterol, pregnancy complications, menstrual irregularities, hirsutism, stress incontinence, increased surgical risk, and premature death (U.S. Department of Health and Human Services, 2001). Many of these health concerns are especially problematic for people with SPMI due to increased cardiac risks and excess mortality rates associated with them (Goff et al., 2005). In fact, research indicates that for people diagnosed with schizophrenia coronary heart disease is more likely to result in premature death than death as a result of a psychiatric crisis linked to the mental illness itself (e.g., suicide) (Hennekens, Hennekens, Hollar, & Casey, 2005). While 30-40% of premature deaths for people with schizophrenia are attributed to suicide and injury, 60% of excess mortality stems from cardiovascular and pulmonary medical conditions and infectious diseases (National Association of State Mental Health Program Directors Medical Directors Council, 2006). 5 Although non-modifiable risk factors for cardiovascular disease (i.e., age, gender, genetic predisposition) exist, many modifiable risk factors are linked to excess weight (e.g., high cholesterol, high blood pressure, physical inactivity, diabetes, elevated stress levels, high rates of alcohol consumption, poor socioeconomic status) (Kumanyika et al., 2008). In addition to physical health issues, there are social and psychological consequences associated with excess weight which impact quality of life. Weight-based stigma has a lengthy history in the United States and, as a result, people with excess weight encounter negative attitudes and discriminatory behaviors from other community members (Carr & Friedman, 2005; Friedman & Brownell, 1995; Kushner & Foster, 2000; Puhl & Brownell, 2001, 2006). Unfortunately, recent research indicates that weight discrimination is on the rise. The National Survey of Midlife Development in the United States (MIDUS) compared changes in perceived weight discrimination from a 1995-1996 baseline survey and a 2004-2006 follow-up survey using a representative sample of adults aged 35-74, finding a 66% increase in the prevalence of weight discrimination between the two time periods (Andreyeva, Puhl, & Brownell, 2008). It can be argued that people with SPMI who are overweight experience dual stigma due to the societal bias against people with either condition. Several studies have shown that excess weight is distressing to people with SPMI, having a deleterious effect on quality of life, life satisfaction, psychiatric symptom exacerbation, and increasing suicide risk (Allison, Mackell, & McDonnell, 2003; Fagiolini, Kupfer, Houck, Novick, & Frank, 2003; Fagiolini, Frank, Scott, Turkin, & Kupfer, 2005; Kolotkin et al., 2008, Strassnig, Brar, & Ganguli, 2003). 6 Despite an urgent need to address the complex problem of excess weight in people with SPMI, intervention development research in this area is its infancy (Galletly & Murray, 2009; Jean-Baptiste et al., 2007, Wirshing, 2004). Non-pharmacological treatment programs for weight management have shown modest results in people with SPMI, demonstrating that change is possible for this population; however, theoretical models for change specific to the needs of people with SPMI and weight management are sorely lacking. Exploratory research on this population’s specific challenges to weight management is critically needed in order to develop a complex understanding of lifestyle factors influencing excess weight prior to intervention conceptualization. Evidence to Support the Need for this Study I have argued that excess weight for people with SPMI is a crucial public health concern in need of urgent attention and that exploratory research is needed prior to intervention development. This assertion is supported by the intervention development criteria set forth by the National Institute of Mental Health (NIMH) R34 granting mechanism (National Institute of Mental Health [NIMH], 2008). According to the NIMH, intervention development research is considered to have three stages. Broadly, these stages include intervention conceptualization, intervention development, and pilot testing. The first step, intervention conceptualization, must be based on theory and empirical research to meet the rigorous standards of the federal government. According to the well- established intervention development logic model framework for intervention development, a theory of change must be grounded in relevant literature and research data (Substance Abuse and Mental Health Services Administration, 2002). As previously 7 mentioned, most weight management intervention literature for people with SPMI lacks a theoretical base grounded in data derived from the participant’s perspectives and experiences. As such, underlying risks, assets and theoretical models for change in people with SPMI may be determined only based on theoretical frameworks available and pre- determined knowledge and beliefs about the factors influencing excess weight in this population. Thus, an understanding of actions, attitudes, and conditions that influence weight management from the perspective of people with SPMI is a first step in the intervention development process. The intervention development logic model is similar to the template for translational research used to develop intervention and later test the intervention’s efficacy and effectiveness at the USC Division of Occupational Science and Occupational Therapy (Clark & Lawlor, 2009). Efficacy trials are designed to test interventions under optimal conditions to determine if a program does more harm than good, while effectiveness trials are less tightly controlled and are designed to test interventions under real world conditions (Brekke, Ell, & Palinkas, 2007; Glasgow, Lichtenstein, & Marcus, 2003). The first step in the USC template for translational research process is to identify a worthwhile problem for investigation, which in this case is a lack of knowledge about weight management issues in the lives of people with SPMI from their perspective. The second step is to use qualitative methods to develop an in- depth understanding of the complexities of this experience. Findings of the qualitative study can then be used to develop an intervention based on rigorous research. Once the intervention has been developed, the long and short-term intervention outcomes can be 8 tested in a randomized controlled trial (RCT). Additional steps in the process include evaluating the intervention’s cost effectiveness, studying a theoretical model for why outcomes were produced, developing occupational science theory, and finally, adapting future research and practice based on the findings. To explicate how this process is used, I turn to the example of the Pressure Ulcer Prevention Study (PUPS) funded by the National Institute of Disability and Rehabilitation Research (# H133G000062). This qualitative study was designed to investigate the problem that medically serious pressure ulcers pose to the health and well- being of those with spinal cord injuries by uncovering the complex life circumstances through which pressure ulcers may develop. Through multiple qualitative analyses, the team was able to build a theoretical understanding of problems and identify domains of concern for use in development of a Lifestyle Redesign ® Pressure Ulcer Prevention Program (Clark et al., 2006; Jackson et al., 2010). The efficacy and cost-effectiveness of the intervention is now being tested through a RCT funded by the National Center Medical Rehabilitation Research of the National Institute of Child Health and Human Development (R01 HD056267-01). This template for translational research was also previously used in the development of the Well Elderly Studies, two RCTs conducted at the University of Southern California which respectively explored the efficacy and effectiveness of Lifestyle Redesign® intervention for older adults (Clark et al., 1997). Prior to development of the Lifestyle Redesign program®, qualitative research was used to determine domains of concern and adaptations used by older adults within the community 9 to tailor the intervention to their particular needs (Clark et al., 1996). Findings from the efficacy trial funded by the National Institute on Aging (R01 AG11810-01S1) showed that Lifestyle Redesign® resulted in a cost-effective mediation of physical and psychological declines normally associated with aging, with 90% of gains maintained at six-month follow-up (Clark et al., 2001; Hay et al., 2002). Specifically, older adults who received the Lifestyle Redesign® intervention improved in a number of health-related quality of life domains (e.g., vitality, general health, general mental health, social functioning, and health-based role limitations), whereas the control group declined. Furthermore, even in domains where there was a decline in the intervention group (e.g., bodily pain, physical functioning, and emotion-based role functioning), those who received the treatment showed significantly less decline than the control group (Clark et al., 1997). Following an efficacy trial, the effectiveness trial (R01 AG 021108-01A3) was subsequently conducted to replicate the results of the original study and examine mediating mechanisms responsible for the program’s positive effects. In recent years, a Lifestyle Redesign® intervention was developed for weight loss in the general population. Since its inception in 2004, The Lifestyle Redesign® Weight Loss Program housed at the USC Occupational Therapy Faculty Practice has served over 600 clients. Preliminary outcome data suggest effectiveness of the program, as evidenced by a reduction in 4.2% of body mass and 7.5% total fat mass at 90 days post-intervention in participants who attend at least half of the 16 weekly sessions (Clark, Salles-Jordan, & Grenard, 2008). 10 The success of Lifestyle Redesign® in producing positive outcomes demonstrates the importance of an intervention development logic model framework, which emphasizes research prior to intervention conceptualization. Qualitative investigation can be used to provide new and detailed understandings of the real-life circumstances and perspectives of the potential population and this may greatly influence an intervention’s promise. Purpose of the Study This study was designed to meet the first two steps in the template for translational research used at USC, which may subsequently be used for intervention conceptualization. Therefore, I used qualitative research methods to gain a complex understanding of the lifestyle circumstances of community-dwelling adults experiencing SPMI and weight management issues in order to illuminate how complex personal and contextual factors influence weight management in everyday life. I expected that factors already cited in the literature such as the impact of psychotropic medications, sedentary lifestyle, poor diet, self-regulation, and limited access to medical care would likely emerge as important considerations, but beyond those I hoped to be able to uncover unknown contextually embedded factors. I theorized that such factors may relate to the interconnected nature of activity patterns and demands, habits and routines, history and envisioned futures, stress and comfort, self-image and social relationships, personal desires and meaning ascribed to doing, and environmental and sociopolitical affordances and barriers of this group. 11 Research question and overarching aims. Consistent with a naturalistic approach to inquiry, the overarching research question was intended to provide a broad direction to the research while specificity emerged in the process of conducting the study itself (DePoy & Gitlin, 2005). Although I was unable to anticipate questions that would surface in the field, the following query and interrelated aims served as a general guiding framework to this study. The primary question driving this research was: How do personal factors and life circumstances coalesce in everyday activity to support or hinder the ability to manage weight in particular adults with SPMI who reside in the community? The interrelated aims of this study were to: 1. Develop a complex understanding of lifestyle issues (e.g., habits, routines, activity types, activity patterns and demands, environments, and sociopolitical factors) that contribute to excess weight in these particular individuals; 2. Identify key threats and ideal supports, as perceived by participants, to sustaining a health promoting routine aimed at weight management and wellness; 3. Uncover what sorts of activities participants view as health promoting and gain a sense of how these participants’ patterns of thinking, self-image, identity, attitudes, desires, priorities, ascribed meaning, stress experiences, history, and social relationships affect their approach toward these activities; and 4. Explore, from the participants’ perspectives, the ways that health and quality of life are affected by weight management issues. 12 Upon embarking on this study, I hoped that the results would eventually be used to develop an intervention to assist those with SPMI and excess weight to maximize health and quality of life and reduce excess mortality associated with these conditions. Significance of the Study Conceptually, this study falls within the boundaries of occupational science because its main focus is on addressing a global health issue through exploring the contextualized everyday experiences in the lives of people with SPMI and weight management issues, considering the interface between activity, health, and quality of life. Since its inception, occupational science, which emerged as an academic discipline in 1989 at the University of Southern California, has held at its center a commitment to address social challenges by developing a deep “understanding [of] the relationship between engagement in occupation and health” (Yerxa et al., 1989, p. 1). While the interdisciplinary field of occupational science has evolved in the years since its origination, research addressing global health concerns through the study of occupation continues to be of paramount importance to the discipline (Clark, 2006). The word ‘occupation’ as used in occupational science and occupational therapy is not widely understood outside of the field, which may be attributed to the etymology of the term. Occupation is derived from the Latin root “occupacio” meaning to seize or take possession of, and the founders of occupational science asserted “to engage in occupation is to take control” (Yerxa et al., 1989, p. 5). Defining the concept of occupation within occupational science and therapy has been a complex task and many scholars and clinicians have contributed to conceptualizations of occupation. For example, Zemke and 13 Clark (1996) defined occupation as “chunks of daily activity that can be named in the lexicon of the culture” (p. vii), and Wilcock (1999) described occupation as “a synthesis of doing, being and becoming” (p. 3). As occupational science has progressed, we have moved beyond attempts to reach consensus since definitions “tend to oversimplify the nature of a discipline, its domains of concern, and perhaps…the ways in which a science addresses the needs of society” (Clark & Lawlor, 2009, p. 3). A feature of occupation that is of particular relevance to this study is that the meaning of doing everyday activities is interwoven with issues of action, power, vulnerability and protection. What may be externally perceived as lack of engagement in a healthy occupation can be reframed as an occupation of healthy resistance; that is, an expression of one’s personal power and agency against the larger sociocultural and political context in which he or she exists. Occupations of healthy resistance may be especially important to people who have been marginalized or stigmatized in some way, such as the participants in my study. Here, I believe Lawlor’s (2003a) conceptualization of the socioculturally embedded experience of being occupied and Dickie and colleagues (2006) framing of occupations as transactional experiences versus focusing on occupation per se is particularly useful. To illustrate this point, I turn to Davidson’s (2003) story of Jane, a woman with SPMI who on the surface engages in what might be perceived as little healthy activity and poor eating habits. She eats cold beans out of a can in front of the television or picks up a hurried lunch at Burger King. While these activities might be interpreted as unhealthy, a result of her illness symptoms, or indicative of her social class, Davidson 14 encourages us to get “inside” Jane’s experience, which allows us to consider issues of power, action, vulnerability and protection at work in activity. As Jane states: I don’t want to eat really, because it doesn’t taste good when I’m alone…[but] when you go out [and] you’re not alone, you’re able to eat talking to somebody, so that can of beans could have been in a gold bowl instead of just a plain, cold tin can (p. 106). This brief statement exemplifies that the meaning of eating for Jane is bound in a larger social experience of being occupied, whether she is alone or not. By eating in front of the television or grabbing a fast-food lunch, Jane is resisting loneliness to the extent possible and asserting power over her contextual world. These approaches to activity serve to protect her from the vulnerability of isolation and allow her to continue engaging in an activity required for survival. A second framing of occupations of resistance is useful when considering the daily activities of people who have been under external control, such as those with SPMI. Frequently, people with serious mental illness are faced with a sociopolitical structure that demands compliance with particular activities. In my clinical experience, lack of engagement in these required activities (e.g., taking medications, meeting with case managers, attending a therapeutic program) is frequently attributed to the symptoms of the illness or blamed on the person’s perceived faults. I do not mean to imply that there are not cases where symptoms contribute to lack of engagement in occupations such as these; however, we must be careful in our conceptualization of what constitutes healthy occupation and how we view disengagement. Surely, it is possible that a person with a mental illness, like any person not diagnosed as such, resists engagement in certain occupations deemed socially appropriate and healthy in favor of an alternative that is 15 more aligned with the person’s values, beliefs and goals. Furthermore, it may be particularly important for people who have been marginalized to strongly assert power in their activity choices in order to combat the coercion that has typically threatened their individuality and autonomy. Occupational science, with its emphasis on exploring complexities in everyday living, is uniquely positioned to examine the issues I have proposed in this study. The discipline’s perspective on the intersections of activity, health, and quality of life and interest in conducting socially responsible studies to support the global health of underserved populations provides a sound foundation for this research project. If the weight management experiences of people with SPMI are to be understood more fully in terms of activity, life circumstances, health and life quality, the discipline of occupational science is very well equipped to address this need. In addition to the aforementioned, this study provides a beginning knowledge base for a previously unexplored opportunity in occupational therapy. The American Occupational Therapy Association (AOTA) released a statement on obesity calling for occupational therapists to address this pressing community health need for all people in order to decrease mortality and increase quality of life (Blanchard, 2006). In a follow-up publication, the AOTA position paper indicated that occupational therapy intervention for obesity, although not limited to the following, might include: community programs of health promotion through lifestyle change; education programs; facilitating the development of new habits and routines; Lifestyle Redesign ® programs; recommendation of home modifications; adaptations/equipment; compensatory training in ADL and IADL; wellness programs for children, teens, and adults; play and physical education in the schools; safe patient-handling programs in hospitals and skilled nursing 16 facilities; and post-surgical intervention (Clark, Reingold, & Salles-Jordan, 2007). Excess weight, typically addressed by other professionals (e.g., nurses, dieticians) in psychiatry and elsewhere, must also be addressed by occupational therapists, as it is the occupational therapy practitioner who has an in-depth understanding of the person’s activities as they unfold, considering context, history, potential futures, identity and ascribed meaning. The intricacies of activity (e.g., the relationship between eating and doing), health issues, their contextual embeddedness and the interplay between these are the occupational therapist’s unique area of expertise. This study provides a foundation for future research on intervention for people with SPMI and weight management issues, thereby supporting the occupational therapy profession in addressing a vital public health concern. 17 Chapter 2: Literature Review In this chapter, I begin with a brief overview of the historical treatment of those with severe and persistent mental illness (SPMI) and discuss the emergent political vision of the need for health and wellness in the United States for this population. In this section, I will lay a contextual foundation for understanding the experiences of adults with SPMI. Following this introduction, I will argue that while there is a national call to action to address the health and wellness needs of those with SPMI, careful review of the Healthy People 2010 (U.S. Department of Health and Human Services, 2000) and the Healthy People 2020 (U. S. Department of Health and Human Services, 2009) plans, which are designed to build healthier communities do not fully address the needs of this population. As written, these well-intentioned initiatives appear to address the needs of people with SPMI from a biomedical standpoint, focusing on the mental illness itself rather than efforts to enhance their overall health and wellness. I assert that a more complex view of wellness is needed and that the divide existing between mental and physical health concerns is especially problematic for those who experience SPMI and weight management issues. In the next section of the chapter, I will specifically address weight management research. First, I will provide an overview and comparison of weight management intervention approaches used in the general population with those for adults with SPMI. Although modest outcomes in preventing weight gain or promoting weight loss will be evident in this synthesis of the literature, the vast majority of interventions for those with 18 SPMI have little or no impact on many other health and quality of life indicators. I theorize that this is due, in part, to intervention development that has not followed a logic model framework. Second, I will present a synthesis of current practice in weight management interventions to illuminate a gap in attending to the contextually embedded nature of activity and the complexity of lifestyle issues in those with SPMI. I intend, in this section, to build a case for the exploratory research I undertook on the personal and contextual everyday experiences with weight management from the perspective of people with SPMI. In the final sections of the chapter, I provide an overview of personal perspectives on mental illness and weight management as told through the autobiographies of particular people with SPMI. These first-person accounts serve to sensitize us to the unique features of particular illness experiences, while noting common areas of challenge and recovery support. I follow this with a summary of known barriers to weight management as discussed in the clinical literature and conclude with a discussion of occupational therapy as it relates to weight management in this population. In the end, my intent in this literature review is to provide evidence to support the need for this research study as a first step in intervention development. Similar to the findings of this research discussed in later chapters, the topics selected for inclusion in this chapter are diverse, complex and interrelated. Historical Treatment of Severe and Persistent Mental Illness Psychiatric symptomotology can been traced back to writings since the age of antiquity and mental illness is recognized as a highly prevalent and disabling condition 19 worldwide (Johnstone, Humphreys, Lang, Laurie & Sandler, 1999; World Health Organization, 2001). Historical interventions, designed to thwart psychotic symptoms (e.g., delusions and hallucinations), can be characterized as nothing other than atrocious. Patients housed in asylums in 18 th century Europe for example, endured treatment that included attempts to break the patient’s will through beatings, bleeding, and submersion to the point of near drowning (Whitaker, 2002). Although the moral treatment movement improved conditions somewhat for those with mental illness, painful and unsuccessful treatments continued in the first half of the 20 th century. Examples of these included inducing fever or coma through exposure to harmful substances, electroconvulsive therapy, and lobotomies (Green; 2001; Kyziridis, 2005). In the middle of the 20 th century, the first antipsychotic and antidepressant pharmacotherapies were introduced. While these were viewed as an improvement in treatment, many antipsychotic medications were also deemed the equivalent of chemical lobotomies due to their ability to render patients indifferent (Kyziridis, 2005). Further, the extrapyramidal side effects of these drugs (e.g., muscle tone loss, postural disturbances, tremors, and restlessness) were severely debilitating. Similarly, tricyclic antidepressants and monoamine oxidase inhibitors were problematic. While psychiatric symptoms often improved, many first-generation antidepressant medications posed serious physical health risks (e.g., cardiovascular problems, potential for toxicity in overdose). The need to determine a cause for origins of particular SPMIs and the prominence of Freud’s psychoanalytic theory in the mid-20 th century resulted in attributing the origins 20 of mental illness to the relationship between mother and child (Kyziridis, 2005; Noll, 2000). For example, the “schizophrenogenic” mother was seen as the root cause of schizophrenia through the 1960s. Also, family interaction theories, which focused on unhealthy family communication patterns, emerged in the 1950s, and as a result poor family interactions were also blamed for the origin of SPMI through the 1970s (Noll, 2000). In recent years, attempts have been made at the national level to re-characterize mental illnesses (e.g., psychotic, mood, and anxiety disorders) as brain disorders for which treatment exists. For example, the National Institute of Mental Health (NIMH) designated the time period between 1980 and 1990 the “Decade of the Brain,” which intended to shift the focus in mental health from poor parenting and family relationships, and towards a neurobiological model of illness (Davidson, 2003; Torrey & Hafner, 1983). Following this period, the Surgeon General issued a report on mental health indicating that mental illness is an important public health issue and offered hope for treating all types of mental illness (U.S. Department of Health and Human Services, 1999). Contemporary treatment of SPMI involves administration of psychiatric medications and myriad therapeutic interventions to assist with skill development, reality-checking and symptom management (Kyziridis, 2005). Second-generation antidepressant and antipsychotic medications emerged in the mid-1980s and 1990s, respectively. While these medications are deemed a vast improvement over previous pharmacological approaches that had higher levels of toxicity in overdose (i.e., tricyclic 21 antidepressants and monoamine oxidase inhibitors) or disrupted daily functioning due to extrapyramidal symptoms (i.e., typical antispsychotics), many of these medications continue to evidence serious side effects (e.g., weight gain, blood disorders, metabolic conditions) that have potential to lead to multiple health risks. The National Call to Action on Health and Wellness for Mental Illness Due to the serious and preventable nature of co-morbid physical conditions responsible for early mortality and high health care costs, the promotion of health and wellness of people with mental illness is receiving national attention. In September 2007, the Center for Mental Health Services (CMHS) of the Substance Abuse and Mental Health Services Administration (SAMHSA) sponsored a national summit to develop a strategic plan for promoting wellness of people with serious mental illness (Center for Psychiatric Rehabilitation, n.d.). The goal is to reduce health disparities and “promote wellness for people with mental illnesses by taking action to prevent and reduce early mortality by 10 years over the next 10 year time period” (Mauer, 2007, ¶5), by optimizing health, recovery, and life satisfaction through effective community-based programs and supports. Lack of attention to a wellness-focused lifestyle is recognized as a contributing factor not only to premature death and quality of life, but also thwarts mental health recovery efforts and undermines the complexity of disability experiences (Hutchinson et al., 2006). The National Alliance for the Mentally Ill (NAMI) has also launched a wellness campaign designed to aid mental health consumers with understanding the benefits of a healthy lifestyle and its link to emotional health (National Alliance for the Mentally Ill, 22 n.d.). While this initiative, entitled Heart & Mind: Mentally Healthy/Physically Strong, addresses addiction and stigma, the primary focus in the consumer booklet is on incorporating healthy lifestyle changes through activity, diet and exercise. Conditions such as obesity and related metabolic disorders are specifically addressed, highlighting the importance of these issues for people with mental illness. Lifestyle intervention approaches to wellness hold promise for meeting the contemporary physical and mental health needs of people with mental illness at large, including those with SPMI. A Qualitative Textual Analysis of a National Approach to Health The U. S. Department of Health and Human Services (2000) Healthy People 2010 report identifies three leading health indicators that have relevance to this study: Obesity and Overweight, Physical Activity, and Mental Health. The leading health indicators are broad areas that capture the nation’s chief health concerns in order to stress the importance of promoting health and preventing disease. These health indicators are used to set goals and objectives and develop plans for improving community health in the U.S. over a ten-year period. In this section, I will discuss and synthesize relevant sections of the Healthy People 2010 plan to demonstrate the significance of my study to the nation’s health goals. It should be noted that while these health indicators appear to address the general population, I argue that they are particularly pressing for people with SPMI. The most relevant goals and objectives to my study from the Healthy People 2010 plan (U. S. Department of Health and Human Services, 2000) are found in the chapters addressing Nutrition and Overweight (chap. 19), Physical Activity and Fitness (chap. 22), and Mental Health and Mental Disorders (chap. 18). The goal associated with the first 23 category (i.e., nutrition and overweight) is to “promote health and reduce chronic disease associated with diet and weight” (p. 19-3). The objectives that relate to my study can be summarized as follows: (a) reduce obesity in the adult population; (b) increase consumption of nutrient-rich foods following recommended portions set forth in the Dietary Guidelines for Americans; (c) decrease consumption of saturated fats, total fat intake, and sodium in accordance with the Dietary Guidelines for Americans; (d) increase physician monitoring and nutrition education for people diagnosed with weight-related health issues (e.g., cardiovascular disease, diabetes, hyperlipidemia); and (e) ensure that people have ways to acquire food that is nutritionally adequate at all times. These goals seem especially important for people with SPMI for the following reasons. First, as previously noted, excess weight is a serious concern for people diagnosed with SPMI, with obesity rates estimated to be up to twice that of the general population (Millar, 2008; Wirshing, 2004). Second, research suggests that significant contributors to morbidity in people with SPMI are related, in part, to poor diet (Brown, Birtwistle, Roe & Thompson, 1999; Dixon, 2003) and excess mortality rates are associated with obesity related disorders (Green, Patel, & Goisman, 2000). Third, people with SPMI tend to ingest more calories than those in population controls (Strassnig, Brar, & Ganguli, 2003), with diets consisting of high fat and sugar intake and low fiber, fruit, vegetable, and vitamin consumption (Brown et al., 1999; McCreadie, 2003). And fourth, lower socioeconomic status is identified as a contributing factor to obesity, and people with SPMI are overrepresented in this population (Weber & Wyne, 2006). 24 The goal associated with the second category (i.e., physical activity and fitness) is also of particular importance for people with SPMI. This goal is to “improve health, fitness, and quality of life through daily physical activity” (U. S. Department of Health and Human Services, 2000, p. 22-3). The following summarized objectives are particularly relevant to my study. Increase adult participation in: (a) physical leisure activities; (b) moderate physical activity for at least 30 minutes daily; (c) vigorous activity to promote cardiorespiratory fitness for 20 minutes at least three days a week; (d) physical activities to maintain and enhance strength, flexibility, and endurance; and (e) physician monitoring and nutrition education when diagnosed with weight-related health issues (e.g., cardiovascular disease, diabetes, hyperlipidemia). Research shows that people with SPMI are less active than the general population (Brown et al., 1999; Cohn, Prud’homme, Streiner, Kameh, & Remington, 2004; Daumit et al., 2005) and that physical co-morbidities may go unrecognized by healthcare professionals (Corrigan & Kleinlein, 2005; Lambert, Velakoulis, & Pantelis, 2003). A further complication for people with SPMI is difficulty following through with recommended treatment (Druss, Bradford, Rosenheck, Radford, & Krumholz, 2001; Roberts, Roalfe, Wilson, & Lester, 2007). I turn now to a third chapter of the Healthy People 2010 plan (U. S. Department of Health and Human Services, 2000), Mental Health and Mental Disorders (chap. 18), which was to be particularly applicable to my study. Given the previously documented prevalence and consequences of excess weight in people with SPMI, one would assume that these issues would be addressed in this section. Unfortunately, attention to healthy 25 activity and wellness for people with psychiatric disabilities is conspicuously absent in the document. Beyond this, the section fails to cross-reference the activity and nutrition sections of the Healthy People 2010 plan, despite recognition that people with disabilities are less likely to engage in physically active leisure activities (U. S. Department of Health and Human Services, 1996) and that weight and diet issues are a concern for people with psychiatric illness (U. S. Department of Health and Human Services, 2000). Instead, the goal for this section, which drives its objectives, is to “improve mental health and ensure access to appropriate, quality mental health services” (U. S. Department of Health and Human Services, 2000, p. 18-3). Although the importance of this goal should not be understated, it seems the absence of a health and wellness emphasis constitutes a serious flaw in this section of the document. In fact, it is precisely the problem of being blind to overall health and wellness and secondary conditions for people with mental illness that my study was a preliminary step to rectify. Excess weight, a crucial health concern in the general population, is arguably an even more pressing problem in people with SPMI. The mental health disorder label appears to shift the focus on outcomes away from general health and wellness concerns and toward goals narrowly focused on the mental illness itself. Lack of attention to healthy activity and wellness within the mental health chapter itself and the absence of a direct link to important physical health chapters suggests fragmentation of physical and mental health aspects of the Healthy People 2010 plan. If national plans such as this document are going to reach the intended goal of building healthier communities, attention to health promotion and disease prevention for all 26 people, including those with mental illness, is essential. This gap demonstrated a pressing need for research that illuminates the intertwined nature of mental and physical health issues in the context of daily life for people with SPMI. The Healthy People 2020 plan is due to be released later this year; however, drafted objectives under the 38 content areas are currently available (U.S Department of Health and Human Services, 2009). Although each of the aforementioned sections have been revised and updated, the mental health section of the new plan still fails to address the pressing physical health needs of people with SPMI. My study, which explored the lives of people with SPMI and weight management issues, problematizes the divide between mental and physical health and provides a more complex view of health and wellness for this population. Weight Mangagement: Comparing Approaches in Two Populations Having contextualized the historical treatment of those with SPMI and the need to address health and wellness in this population, I now provide an overview of weight management intervention research in the United States. Prior to discussing specific practices in weight management intervention for those with SPMI, it is valuable to have an overview of best practices and treatment in the general population as a background against which similarities and differences in approaches across the populations can be analyzed. Overview of weight management programs for the general population. Treatment and prevention of excess weight in the general population falls broadly into three categories: pharmacological, surgical or endoscopic, and non-pharmacological 27 interventions focused on lifestyle change. According to the clinical practice guidelines set forth by the American College of Physicians, non-pharmacological intervention should precede any attempts to medically manage weight and if medical management is necessary, it should be used in tandem with a non-pharmacological approach (Snow, Barry, Fitterman, Qaseem, & Weiss, 2005). Pharmacological interventions for weight management consist of using prescribed anti-obesity medications designed to reduce fat absorption or suppress appetite (Padwal, Li, & Lau, 2003). Surgical and endoscopic approaches include bariatric surgery and intragastric balloon placement. Bariatric surgery is used as a last resort for patients who are severely obese 5 and who have not experienced sufficient results with less invasive approaches. Intragastric balloon placement is typically used in people who have a high risk for surgery, are at or above 40% of their optimal body weight and, like bariatric surgery candidates, have had limited success with other treatments (Fernandes et al., 2007). Non-pharmacological approaches to weight loss include behavioral and cognitive- behavioral treatments, diet and exercise programs, psychotherapy, relaxation therapy, and hypnotherapy (Shaw, O’Rourke, Del Mar, & Kenardy, 2005). A recent meta-analyses of 36 randomized controlled trials (RCTs) addressing psychological interventions (Shaw et al., 2005) and 43 RCTs focused on physical activity (Shaw, Gennat, O’Rourke, & Del Mar, 2006) found that the most successful weight loss interventions in the general public ! 5 BMI > 40 kg/m2 28 use comprehensive approaches, which combine psychological and behavioral components with diet and exercise lifestyle modifications. Overview of weight management programs for adults with SPMI. Similar to approaches used in the general population, pharmacological, surgical, and non-pharmacological interventions are used to address weight management in people with SPMI; however, significant differences exist in the two populations. Unlike pharmacological treatment in the general population, which often includes the use of stimulants, pharmacological interventions for people with SPMI are more likely to include switching the patient to a more metabolically neutral medication due to weight- gain side effects of particular antipsychotics and antidepressants and the possibility of psychiatric exacerbation with stimulant use (Loh et al., 2006). Surgical interventions, while gaining momentum in the general population, are less frequently reported in people with SPMI. For example, only one study was found that used bariatric surgery for patients with schizophrenia deemed morbidly obese (Hamoui, Kingsbury, Anthone, and Crooks, 2004). The small sample size (n=5), unique characteristics of the population (e.g., medical stability, living independently, consistent social support), and lack of long-term outcome data limits the generalizability of this study (Loh, Meyer, & Leckband, 2006). As mentioned in Chapter 1, non-pharmacological interventions for people with SPMI often lack a theoretical model for change based on the particular needs of the population. Many interventions use circumscribed rather than comprehensive lifestyle approaches to weight management and those programs that are more comprehensive are 29 often adapted from other population-based programs after the fact rather than being built on the particular challenges of those with SPMI prior to intervention conceptualization. An additional challenge faced by people with SPMI is that those in this group must also contend with the reported success of historical approaches to weight loss used in the 1960s and 1970s, which were based on operant conditioning and token economies (Loh et al., 2006). These interventions took place in controlled inpatient settings and are unlikely to translate to a community model of care. Moreover, these types of interventions are not consistent with an appreciation for the complexity of everyday life and do not demonstrate an in-depth understanding of the population’s needs or abilities. Existing research on non-pharmacological intervention for those with SPMI is often methodologically inadequate (e.g., small sample size, inadequate design) leading to difficulty determining the effectiveness of such programs (Birt, 2003; Bradshaw, Lovell, & Harris, 2005; Catapano & Castle, 2004; Loh et al., 2006). Another concern is that there is a paucity of randomized controlled trials (RCTs) addressing non-pharmacological interventions compared with the general population. For example, a recent meta-analysis addressing pharmacological and non-pharmacological psychological treatment for obesity in schizophrenia conducted for The Cochrane Collaboration revealed that only five of the 23 studies included focused on assessment of solely non-pharmacological intervention programs (Faulkner, Cohn, & Remington, 2008). The remaining research used a pharmacological approach or adjunct. In contrast to that addressing weight management in the general population, intervention research for those with SPMI is in its infancy. In the next section I provide a 30 synthesis of current practice in weight management intervention in the United States for this population to establish the importance of the study I conducted. Current Practices in Weight Management Intervention for Adults with SPMI In the United States, non-pharmacological interventions designed to help people with SPMI manage weight can be organized into two broad outcome categories, either treatment focused on prevention of weight-gain (Littrell, Hilligoss, Kirshner, Petty, & Johnson, 2003) or programs addressing weight-loss (Ball, Coons, & Buchanan, 2000; Brar et al., 2005; Centorrino et al., 2006; Jean-Baptiste et al., 2007; Kalarchian et al., 2005; Menza et al., 2004; Skrinar, Huxley, Hutchinson, Menniger, & Glew, 2005; Weber & Wyne, 2006). Typically, intervention outcomes are addressed by assessing changes in BMI, weight, waist circumference, hip-to-waist ratio, and body fat composition (Galletly & Murray, 2009). Additional outcome measures include such items as cardiovascular and laboratory related changes (e.g., blood pressure, heart rate, vital signs, hematology, lipid profiles, fasting blood glucose), health-ratings (e.g., global severity of illness, psychological well-being, psychiatric symptom differences, physical functioning scales), and measures addressing social relationships, client satisfaction, quality of life, eating and exercise behavior patterns, and daily physical activity level. Although several studies show modest weight-related outcomes, the vast majority of interventions had little impact on other areas of health and quality of life or simply did not address them. I suggest that the limited success of interventions in facilitating change in a variety of health and wellness indicators may be attributed to intervention conceptualization that is not grounded in the needs of potential participants. Without a 31 nuanced understanding of the challenges associated with weight management in the lives of participants, weight management interventions may continue to miss the mark in facilitating broader changes affecting health and quality of life. Community interventions for weight management in people with SPMI vary widely in intensity. Treatment ranges from group programs focused primarily on exercise (Skrinar et al., 2005) to more elaborate lifestyle interventions that combine didactic learning, with experiential skill development and resource support (Jean-Baptiste et al., 2007). Occasionally, a combination of group and individual intervention is used. (Menza et al., 2004). Intervention duration ranges from as short as 10 weeks (Ball et al., 2000) to as long as 52 weeks (Menza et al., 2004). In general, health care professionals (e.g., psychiatrists, dieticians, nurses) led the interventions. While it is not possible to reach consensus on the best existing approach to weight management in this population due to the limitations of current research, some conclusions can be drawn from the literature. First, many people with SPMI are interested and able to participate in community-based weight management interventions, as evidenced by mean attrition rates of various treatment programs at approximately 30%. Second, despite cognitive problems and affective symptoms associated with SPMI diagnoses, engagement in new learning and making changes in relation to nutrition and physical activity is possible. Third, studies show that those with SPMI who are prescribed medications that have weight-gain side effects are able to lose weight or prevent excessive weight gain often associated with these medications through non- pharmacological interventions. 32 In their systematic review of interventions for weight management in those with SPMI, Faulkner and colleagues (2008) provided key findings and recommendations summarized as follows: (a) non-pharmacological interventions such as cognitive behavioral approaches are possible for addressing modest short-term weight loss in this population; (b) further research is needed to determine the best approach to non- pharmacological intervention, including intensity and sustainability of intervention, and personal characteristics associated with treatment success; (c) interventions should focus on setting realistic goals focused on reducing caloric intake versus complex dietary changes and gradually increasing levels of daily physical activity; (d) programs will likely need to provide intensive treatment and on-going support, and the cost of such programs will need to be evaluated; (e) future interventions should include broader attention to environment and daily life activities in context; and (f) lifestyle intervention is needed regardless of weight loss, as physical inactivity and poor diet are independent risk factors for cardiovascular disease. The findings of this meta-analysis support the need for development of non-pharmacological weight management interventions that address the complexity of everyday living for those with SPMI. Development of such interventions requires an in-depth understanding of the supportive and risk-related factors particularly applicable to weight management in this population. Tailoring intervention. In their review article of community-based intervention strategies for weight management of people with SPMI, Galletly and Murray (2009) report that many of the aforementioned interventions were specifically tailored to the intervention population. 33 However, a closer examination of these studies demonstrates that the authors did not conduct qualitative research with potential intervention recipients prior to intervention conceptualization. Rather, many of the strategies appear to be solely based on generally accepted needs of people with SPMI (e.g., simplifying reading materials to a 5 th grade level, repetition and reinforcement, response to tokens or rewards). Moreover, several of the interventions were based on existing program content areas and approaches designed for the general population (Centorrino et al., 2006; Jean-Baptiste et al., 2007; Littrell et al., 2005; Weber & Wyne, 2006). Without exploratory research on the particular needs of the population that the program was designed to help, it is likely that important areas of focus and strategies for addressing their particular concerns could have been overlooked. At this point, review of exemplar lifestyle-based programs is useful. One such program is described in a pilot study conducted by Weber and Wyne (2006). These researchers examined the effectiveness of a 16-week group intervention for people diagnosed with schizophrenia or schizoaffective disorder modeled after the well- established Diabetes Prevention Program (DPP) (Knowler et al., 2002). The DPP was a multi-center RCT shown to be more effective at preventing diabetes and promoting weight loss than pharmaceutical management with Metformin, an oral anti- hyperglycemic medication. The DPP is a comprehensive, multifaceted lifestyle approach to diabetes management and weight loss. This program was developed for general population members with impaired glucose tolerance deemed at risk for Type II diabetes. Specifically, Weber and Wyne recruited 17 male and female subjects between the ages of 18 and 65 (mean age not reported) and randomly assigned them to cognitive 34 behavioral intervention or treatment as usual groups. The cognitive behavioral program consisted of 1-hour duration group sessions over 16 weeks. The sessions were led by a psychiatric nurse practitioner who was trained by the primary investigator and was responsible for assisting participants with goal setting and problem solving, monitoring food and activity diaries, and providing education on diet and exercise. General topics addressed in the sessions included being active, healthy eating, difficulties in lifestyle change, and managing stress. The details of the treatment as usual group were not specified. Comparison of the original DPP program designed for the general population with the protocol described by Weber and Wyne for the SPMI population reveals that exactly the same topics were used and delivered in the same order over the same period of time. As such, there was not evidence to suggest that this program was tailored specifically to the needs of people with SPMI. While power analysis could not be completed in this study due to the small sample size, the researchers made a noteworthy observation that some of the largest barriers to weight loss identified by participants during the course of intervention were related to socioeconomic issues and life circumstances (e.g., transportation, low income, lack of healthy foods and activity). This finding highlights the importance of developing an understanding of the population’s concerns prior to intervention conceptualization. A second exemplar, a pilot study conducted by Jean-Baptiste and colleagues (2007) was based on the LEARN Program for Weight Management: Lifestyle, Exercise, Attitudes, Relationships, Nutrition originally developed for the general population 35 (Brownell, 2004). The study used a semi-crossover design in which 18 male and female subjects with a mean age of 47.29 were randomly assigned to an intervention or control arm. All participants were prescribed an atypical antipsychotic medication and potential participants were excluded if medications had been changed within the previous three months. Further, those with diabetes mellitus were excluded from the study. The researchers indicated that the program was modified for people with SPMI by adding a food provision program and teaching life skills. Participants attended a weekly group led by a dietician for 45-60 minutes over 16 weeks. Topics focused mainly on nutrition education, such as food choices, portion control, label reading, snacking, cooking skills, and dining out. A major difference between this study and the original study on which it was based was that participants were provided with a list of food items for which they would be reimbursed each week, up to $25.00. Another difference was that experiential activities took place on four occasions, including one grocery store tour, one cooking demonstration, and two group walks. Participants were provided pedometers and asked to track their level of activity and keep a food diary. The dietician reviewed food diaries and provided feedback on an individual basis. A total of 14 participants completed the intervention phase of the study and 12 participants completed the 6-month follow up. Findings revealed weight loss immediately post intervention at the p=.025 level, which is commensurate with the findings of similar studies. Mean weight loss at 6 months post intervention continued to improve (16 week mean=6.41 lbs; 6 month mean=10.41 lbs), which was an unlikely finding. In subjects 36 who lost weight, significant improvements were demonstrated in fasting blood glucose (p<.02). The results of this pilot study must be cautiously interpreted; however, it appears that a combination of group treatment and individual feedback coupled with an experiential component to weight loss intervention and external support (e.g., food reimbursement) can result in long-term positive outcomes. A concern with this research is that the program does not appear to have been developed based on an in-depth understanding of the issues surrounding the lives of SPMI and that weight loss outcomes remain modest and commensurate with other studies. While the efforts of these researchers in addressing a pressing public health concern are noteworthy, they do not address what the potential for change might be if a lifestyle intervention was based on a complex understanding of participants’ lifestyle issues in addition to the known problems that plague this group (e.g., financial hardships, limited problem solving, lack of access to medical care, poor eating and exercise habits). Given the strong link between premature death for people with SPMI and weight management issues, science is obligated to continue the quest for the best treatment options. Developing these options begins with a thorough understanding of, and appreciation for the complexity of everyday life and its impact on weight gain in particular populations. The research demonstrates the need for a qualitative study that explores how contextually embedded routines and everyday activities contribute to weight management in individuals with SPMI. Without such research, this population is left with options for 37 modestly successful programs that are based on their nutrition and exercise needs as perceived by health professionals or researchers, application of programs not designed to meet their specific needs, and externally perceived views about the desires and perceptions of this population. A complex understanding of the multifaceted variety of daily activities in context serves to problematize current views on SPMI and weight management and complicate rote approaches to intervention. Synthesis of intervention program foci for adults with SPMI. There is considerable variety in the areas particular programs address. Some programs focus primarily on diet or exercise or a combination of the two. Others address broader topics such as concepts of wellness, spirituality, personal goal setting, and motivation. The majority of interventions focus primarily on diet, assisting participants to reduce or maintain caloric intake. Direct attention to physical activity is less common and frequently fitness skills are only tackled through didactic instruction. Physical activity is rarely integrated into the participant’s everyday life and programs often provide access to exercise equipment or expert consultation that will not be available to participants after the study concludes. In a recent review of 16 weight management intervention programs for those with SPMI internationally, Galletly and Murray (2009) compiled all of the topics covered in the programs they reviewed and identified four content areas addressed: (a) healthful eating skills, (b) exercise and fitness skills, (c) healthy living skills, and (d) self- regulation skills. Healthful eating skills consisted of understanding nutrition principles (e.g., dietary recommendations, caloric intake, food label use, health effects of 38 ingredients), maintaining a healthy diet (e.g., eating regularly, learning strategies for making choices in restaurants, reducing fat in foods, shopping for healthy foods, healthy snacking, identifying appropriate portion sizes, familiarizing with low-calorie food preparation, avoiding non-hungry eating) and addressing medication weight gain side effects. Exercise and fitness skills covered understanding the benefits of exercise and physical activity and how these can be incorporated into daily life, familiarizing oneself with exercise types and correct techniques for safety, monitoring physiological reactions to exercise, using low cost exercise options and daily fitness logs, limiting sedentary activity, and addressing muscle pain. Healthy living skills included developing an understanding of the concepts of wellness and spirituality, practicing coping techniques, structuring daily activity, becoming assertive, valuing medication compliance, avoiding substance abuse, and accessing community resources. Self-regulation skills consisted of goal-setting and monitoring, analyzing risks and benefits, identifying areas for change, practicing motivation strategies, preventing relapse, establishing social support, using positive self-talk and rewards, and increasing cues for desirable behavior. Although this list appears comprehensive, it is important to note that most programs address a limited number of individual items in a content area. Further, it can be argued that current interventions do not do justice to the importance of the contextually embedded nature of activity, the complexity of lifestyle issues (e.g., habits, routines, activity types, activity patterns and demands, environments, sociopolitical factors), and the impact that personal factors (e.g., patterns of thinking, self-image, identity, attitudes, desires, priorities, ascribed meaning, stress experiences, history, social 39 relationships) have on weight management, making a case for exploratory research on these issues prior to intervention conceptualization. Everyday Life: Personal Perspectives and Contributing Factors to Weight Gain Personal perspectives on SPMI and weight management. The vast majority of literature on SPMI comes from a research or clinical perspective. Autobiographies written by people diagnosed with SPMI are rare in comparison to other types of literature, but serve to provide a glimpse into what living with mental illness is like from a personal viewpoint. While this autobiographical literature represents only a minute percentage of people diagnosed with the disease, reviewing their stories helps to ground the qualitative investigator in the challenges and supports deemed essential in particular lives as voiced by the authors. Personal accounts focus mainly on conveying a description of mental illness in the everyday lives of the authors and the recovery process as they have experienced it (McLean, 2003; Saks, 2007; Schiller & Bennett, 1996; Snyder, 2007). While these narratives are unique to each person, some commonalities exist. These texts tend to shift back and forth between the author’s life experience with and without psychosis as a dominant feature. In my synthesis of this literature, the broadest theme appears to be that the ability to achieve what one desires in life is undermined by an intersection of life circumstances and the illness experience itself. In each text, personal goals are discussed and intent to engage in activities toward reaching those aspirations are envisioned, only to be thwarted repeatedly by social barriers and illness-related symptoms. As told by these authors, the illness experience is characterized by a constant state of grappling with 40 identity and a need for maintaining or regaining control over self and environment, while negotiating fear, perceived reality, stigma, and social isolation. Barriers and supports to recovery are frequently noted and issues of treatment are also commonly explored. Generally, challenges expressed consist of: (a) being unsure about the presence of illness due to fluctuating mental status and lack of understanding of the illness, (b) influences of paranoid ideation and resulting mistrust of self and others, (c) fear of exposure and stigma, (d) feelings of shame and worthlessness, (e) difficulty engaging in daily activities and accomplishing goals, and (f) poor psychiatric treatment and medication side effects. Supports tend to consist of: (a) solid relationships with family and friends; (b) helpfulness of a mental health provider; (c) pharmacological and psychological treatment deemed effective by the individual; (d) feeling understood and accepted by others, with opportunities to reality-check when unsure; (e) engaging in activities that provide a sense of personal accomplishment; and (f) having opportunities to balance activity demands with abilities to maintain a manageable level of stress. Weight management, while not the focal point of any of these texts, is referenced briefly in each of them. Saks (2007) began experiencing symptoms of schizophrenia at an early age and her weight fluctuated from underweight to average throughout most of her story. By age 8, she had already begun to experience paranoid ideation and became concerned about losing control over her thoughts. She learned to hide her irrational fears about lurking predators from her parents. Her parents were compassionate but thought she had an over-active imagination. By the time Saks reached puberty and the disorganized thoughts were mounting, her need to affirm that she was in control of 41 herself manifested in going on a crash diet to reduce her weight. When her father asked about her weight loss, she told her father she could gain weight if she wanted to and he challenged her to do so. Saks regained the weight she lost in three months stating, “It felt like a great triumph – I’d driven myself hard in one direction, and then, once challenged, I drove myself hard in completely the opposite direction. And the whole time – I was in complete control – or so I thought” (Saks, 2007, p. 17). Saks does not reference weight gain as a side effect of medications for herself; however, she recounts running into a former hospital friend in the community who had “grown obese from the drugs” (p. 67). In other autobiographies, authors specifically discuss personal experience with antipsychotic medication weight gain side effects. For example, McLean (2003) somewhat humorously states: Nowadays I am relatively well on one of the newer antipsychotics, Zyprexa, or chemical name Olanzapine…Do we all know what Zyprexa stands for? …Zaps Your Psychosis Really EXpands Ass! Have you seen the Zyprexa logo? Inside every thin person is a fat person waiting to evolve with the help of Zyprexa! (pp. 157-158). Snyder (2007), expresses a similar problem, stating: One side effect that I have been unable to reverse is weight gain. The medication I currently take is known to cause an increase in body weight. So far, I have gained about 30 pounds, an increase of about 15% of my normal mass (p. 109). Although both McLean and Snyder indicate that they have measured the pros and cons of stopping pharmacological treatment due to weight gain and do not intend to do so, it is understandable why some people are unable to deal with the burden of this side effect. 42 Reviewing personal stories in preparation for conducting this research helped me to understand the unique characteristics of each person’s illness experience, while attending to common challenges and supports to recovery. Analyzing these narratives has provided an inside look, to the extent possible, of these authors’ life experiences. Although I cannot understand what it is like to live with the condition, these personal stories humanize the experience of SPMI in a way that reviewing academic or clinical literature rarely accomplishes. These autobiographical stories demonstrate that the activities of daily life are bound to one’s history, sense of identity and worth, perceived control, as well as personal desires and envisioned future. Furthermore, careful attention must be paid to personal and contextual factors that affect one’s ability to live a satisfying life. Factors related to weight gain in adults with SPMI. The etiology of excess weight for those with SPMI is a complex phenomenon due to the impact of symptoms and context on activity, weight-gain side effects of medications, and socioeconomic factors; however, the relative contribution of each factor has not been determined (Faulkner et al., 2008). While there appears to be a strong link between particular psychiatric medications and weight-gain side effects (Allison et al., 1999; Kroeze et al., 2003; Newcomer, 2007; Wirshing et al., 1999), excess weight was reportedly problematic for individuals with SPMI prior to widespread use of these medications (Baptista, Kin, Beaulieu, & de Baptista, 2002). People with SPMI are found to engage in less healthy eating habits and have poorer exercise regimes than the general population (Brown, Birtwistle, Roe & Thompson, 1999; McCreadie, 2003). Although 43 eating and exercise routines are frequently referred to in the literature as “lifestyle choices” (Connolly & Kelly, 2005; Millar, 2008) suggesting that people have options to do otherwise, the effect of socioeconomic issues on daily activity engagement must not be underestimated. A large proportion of people with SPMI live at a lower socioeconomic stratum, which has a significant impact on their daily activities. While symptoms of SPMI may result in diminished ability to care for oneself and difficulty recognizing and solving problems that arise (Millar, 2008), lifestyle choices, opportunities for community participation, and treatment are often affected by the financial hardships of, and stigmatizing societal attitudes toward people with mental illness (U.S. Department of Health and Human Services, 1999). Accessing appropriate medical care is frequently limited by stigmatizing attitudes experienced by people with SPMI and healthcare professionals may not recognize co- morbidities (Corrigan & Kleinlein, 2005; Lambert, Velakoulis, & Pantelis, 2003). When and if a practitioner identifies a physical health problem, people with SPMI are less likely to follow-up with recommended treatment (Druss, Bradford, Rosenheck, Radford, & Krumholz, 2001; Roberts, Roalfe, Wilson, & Lester, 2007). While lack of adherence to treatment recommendations may be due in some cases to symptoms of the psychiatric illness, it is more likely a complex, multifactorial phenomenon. Regardless of the cause, weight management problems clearly have a deleterious effect on health and quality of life for this population. My study was a qualitative investigation of the personal and contextual weight management experiences of adults with SPMI designed to illuminate the complexities in 44 their everyday lives. It is hoped that this knowledge will be fruitful in developing a multifaceted lifestyle program leading to better weight management, health, wellness and quality of life for this population. Occupational Therapy for Excess Weight Treatment in Adults with SPMI Despite the fact that excess weight is often a serious and debilitating problem for people with SPMI, potentially affecting performance in all areas of daily life, occupational therapy research addressing weight management in this population is severely limited. To date, only two publications in the occupational therapy professional literature have addressed the issue of weight management and fitness for people with SPMI (Brown, Goetz, Van Sciver, Sullivan, & Hamera, 2006; Lloyd, Sullivan, Lucas & King, 2003). This paucity may be partially due to the fact that people with weight issues are typically referred to healthcare professionals (e.g., dieticians, nurses) other than occupational therapists for treatment. Another potential cause is that occupational therapy programs and research for people who have SPMI focus on addressing activity performance affected by symptoms of the primary diagnosis (e.g., mental illness), rather than addressing the impact of secondary physical issues on daily life. Lloyd and colleagues (2003) evaluated a fitness program in Australia for 11 people diagnosed with psychotic disorders taking atypical antipsychotic medications who had experienced weight gain. This paper did not provide results of a scientific study, and details of the program were vaguely reported with outcomes shown in case study format. The goals of the program were to maintain or reduce weight and increase fitness and physical activity levels. Once per week participants engaged in physical activities (i.e., 45 aerobics, weight training, yoga) with a personal trainer at a local gym. In addition, rehabilitation staff (background unspecified) provided nutritional information and encouragement for physical activity outside of the planned weekly sessions. The authors indicated that, “most participants [had improved] in at least one area of physical health (i.e., reduced body fat percentage, weight or lowered resting pulse rate) and increased activity levels” (Lloyd et al., 2003, p. 20); however, further details were not specified. The second publication, a non-randomized trial by Brown and colleagues (2006), tested the efficacy of a 12-week manualized group intervention developed for adults aged 21 to 65, diagnosed with a serious mental illness and who had a BMI >25. Twenty-one participants were assigned to the intervention group and 15 were assigned to the control group (treatment as usual unspecified). The program was based on psychiatric rehabilitation principles (Corrigan, 2003) and weight loss strategies provided by the National Institute of Health’s (NIH) Clinical Guidelines on the Identification, Evaluation and Treatment of Overweight and Obesity in Adults (National Institutes of Health, 1998). The group, led by an occupational therapist, dietician and exercise physiologist, met for 2-hour sessions one time per week. The goals of this program included exercising 30 minutes five times per week, walking at least 10,000 steps per day, and eating at least five servings of fruits and vegetables daily. The program incorporated individual and group goal setting and weekly phone support. Instrumental supports were provided in the form of meal replacements, hand weights, elastic resistance bands, heart rate monitors, pedometers, workout tapes, cooking utensils, and fast food guides. Program leaders provided skills training and compensatory strategies by breaking down steps, repeating 46 information, giving frequent feedback, simplifying materials and using visual displays. Participants were encouraged to keep daily food and activity diaries. The program focused on experiential learning via group exercise, determining how to use heart rate monitors and going to a fast food restaurant to practice ordering healthy choices. Further, social support was provided in the form of a consumer-led exercise group that met 3 times per week. Results revealed that the intervention group lost weight (mean= -6.0 lbs.) while the control group gained weight (mean= +1.0 lb.). Authors also reported that the intervention group decreased more than the control in BMI, waist circumference, and the physical activity subscale scores on the Health Promoting Lifestyle Profile II (specific details not provided). This study appears to affirm findings identified in earlier studies indicating that modest weight loss is possible in this population; however, further comparison between this research and broader trials is hindered by lack of randomization, small sample size, and sparse outcome detail. Although the results of this study may be limited, the unique characteristics of the program (e.g., delivery of intervention using multiple professionals and consumer modeling, supplying various tools, teaching compensatory and adaptive techniques, using group and individual support methods in tandem, and providing experiential learning) reflects an attempt at a more comprehensive approach to lifestyle modification than is characteristic of the numerous relevant studies outside of the occupational therapy profession. The dearth of information on occupational therapy interventions for weight management in those with SPMI provides several important opportunities for 47 occupational science and occupational therapy. First, the discipline can expand its knowledge base by furthering research and eventually developing theory aimed at uncovering the complexities of daily living and its impact on weight management for this population. Through such research, occupational science has the potential to make important contributions to other disciplines, inform stakeholders, and impact social policy. Second, the need for comprehensive approaches to health and wellness in populations with psychiatric disabilities suggests that occupational therapy approaches such as Lifestyle Redesign® which have produced positive health outcomes in other populations may be effective in producing sustainable weight loss and improving quality of life in people with SPMI. Finally, providing a detailed description of the mind-body connection and the complexities of daily living for people with SPMI has potential to broaden the domains of concern addressed by occupational therapists working in psychiatric settings. Conclusion Although attention to the physical health and wellness of people with SPMI is gaining momentum nationally and excess weight is recognized as a serious public health concern, interventions based on an understanding of the complexities of daily life from the potential intervention recipient’s perspective are sorely lacking. Weight management strategies are typically based on cognitive-behavioral or behavioral approaches addressing nutrition and exercise, rather than on a comprehensive approach to lifestyle change derived from an understanding of the life circumstances of the population that the interventions are intended to serve. Through the study I undertook, I aimed to rectify this 48 problem by exploring the perspectives and life situations of people with SPMI as they intersect with weight management issues. 49 Chapter 3: Methods Methodological Approach The primary intent of this study was to gain a complex understanding of how personal factors and life circumstances coalesce in everyday activity to support or hinder weight management in adults with SPMI who reside in the community. In full recognition that qualitative research is an emergent process requiring the researcher’s “openness to new data” (Baszanger & Dodier, 1997, p. 9), the following interrelated aims served to provide a guiding framework for this study: (a) develop an in-depth understanding of lifestyle issues (e.g., habits, routines, activity types, activity patterns and demands, environments, and sociopolitical factors) that affect weight management in these particular individuals; (b) identify key threats and ideal supports, as perceived by participants, to sustaining a health promoting routine aimed at weight management and wellness; (c) uncover what sorts of activities participants view as health promoting and gain a sense of how these participants’ patterns of thinking, self-image, identity, attitudes, desires, priorities, ascribed meaning, stress experiences, history, and social relationships affect their approach toward these activities; and (d) discover the ways that health and quality of life are affected by excess weight, from the participants’ perspective. The purpose of this chapter is to discuss the philosophical perspective underlying the study (i.e., the orientation toward human action) and to provide a detailed discussion of the methods used to generate and analyze data. This research is grounded in qualitative methodologies. Further, a disability studies perspective emerged during the course of the study as a useful framework for understanding the participants’ experiences. 50 Theoretical Foundation and Rationale Before embarking on my qualitative study, I familiarized myself with the history of the qualitative tradition in order to become situated as a researcher. Denzin and Lincoln (2008) identify eight historical moments in qualitative research: “the traditional (1900-1950); the modernist…(1950-1970); blurred genres (1970-1986); the crisis of representation (1986-1990); the postmodern…(1990-1995); postexperimental inquiry (1995-2000); the methodologically contested present (2000-2004); and the fractured future…(2005-present)” (p. 3). Although timeframes are provided, each of these historical moments as conceptualized overlap with one another and operate in current day qualitative research. The foundation of qualitative research emerged in disciplines such as anthropology from a colonized perspective, where providing representations of the Other were central to its mission. Historically, white researchers visited foreign lands to gain an understanding of the tribal group life of indigenous, nonwhite people, which was believed to be truth. Particular qualitative methods were attributed to particular disciplines (e.g., anthropology, sociology, psychology) until the blurred genres phase when the emergence of postpositivist arguments shifted qualitative research and resulted in commingling of approaches across disciplines. This trend gave rise to the crisis of representation, in which researchers “struggled with how to locate themselves and their subjects in reflexive texts” (Denzin & Lincoln, 2008, p. 4). In more recent years, during the postmodern and postexperimental moments, the narrative turn in qualitative research gave rise to storytelling and experimental ethnography emerged. Currently, qualitative 51 research is a site for critical commentary on issues of diversity (e.g., race, gender, class) and sociopolitical affordances of communities. Although the term has different meanings contingent upon the historical period in which it is situated, Denzin and Lincoln (2008) provide the following general definition: Qualitative research is a situated activity that locates the observer in the world. It consists of a set of interpretive, material practices that make the world visible. These practices transform the world. They turn the world into a series of representations, including field notes, interviews, conversations, photographs, recordings, and memos to the self. At this level, qualitative research involves an interpretive, naturalistic approach to the world. This means that qualitative researchers study things in their natural settings, attempting to make sense of, or interpret, phenomena in terms of the meanings people bring to them (p. 4). Consequently, qualitative research produces knowledge that is socially constructed through an exchange between researcher and participant. Additionally, considering the methodological paradigm within which a researcher functions is of paramount importance. As Guba and Lincoln (1989) state, “values permeate every paradigm that has been proposed or might be proposed, for paradigms are human constructions, and hence cannot be impervious to human values” (p. 65). As such, researchers must make as transparent as possible the guiding theoretical framework for their data generation and analysis process if the results are to be meaningfully understood by the research audience. During the course of my study, a disability studies philosophical perspective emerged as a useful lens for qualitatively exploring the experiences of participants with SPMI and weight management issues. As my data generation and analytic efforts progressed, I sought a framework that would respect the experiences of the participants by highlighting their weight management issues in a contextualized humanistic manner. 52 Rejecting a conventional medical view of disability relative to both mental illness and management problems provided a fruitful analytic scaffold for illuminating areas of social oppression that were often experienced by this group. This particular ontological framework afforded the possibility of revealing features of life circumstances that might be taken for granted or otherwise veiled from view. For example, while one might assume that a main cause of excess weight is due to unbalanced calorie to energy expenditure or psychiatric symptomotology (problems situated within the person), a disability studies perspective can help shift the researcher’s focus to consider less understood but equally important factors such as sociopolitical and socioeconomic factors (problems situated within the person’s context). As Davis (1997) reminds, those with disabilities have been “isolated, incarcerated, observed, written about, operated on, instructed, implanted, regulated, treated, institutionalized and controlled” (p. 1). Therefore, I felt it was particularly important to search for a philosophical perspective that would honor the participants’ experiences and history of oppression. Contrary to conceptualization of interventions rooted in a typical biomedical paradigm, a disability studies perspective calls for a phenomenological view of constructs and analysis of sociopolitical structures and contexts of activity (Williams, 2001). Further, given the long history of locating disability within the individual in rehabilitation approaches, it is important to consider alternative conceptions of disability when attempting to understand experiences and develop interventions that address more than functional limitations one posesses (Marks, 1997). Without direct attention to the concerns of the people for whom an intervention may be conceptualized (i.e., looking at 53 what can be done for people given daily life circumstances), we quite simply become a part of the problem by designing treatment to meet needs as we envision them. As such, researchers and practitioners can become “key figures in the perpetuation of oppression” (Williams, 2001, p. 135). While this theoretical foundation highlights oppression in everyday life, it is not enough to theorize disability wholly in terms of social factors. Analysis must occur in many overlapping realms of human experience which include: theorizing the bodily or mental processes that someone experiences; theorizing the relationship and context in which they are placed; theorizing the meanings that emerge, for the person, from the relationship between the two; and theorizing the oppression or disadvantage that arises out of this, particularly social and historical circumstances (Williams, 2001, p. 129). Embodiment and the universality of suffering and frailty must be taken into account when considering the everyday life experiences of humans (Turner, 2001). In my study, I intended to reach a greater depth of understanding about the lives of people with SPMI and weight management issues to help the research audience “look anew at the world they already know” (Silverman, 1997, p. 251). As my focus was on revealing complexities in everyday life, it was well suited to occupational science research (Clark & Lawlor, 2009; Clark et al., 2006; Clark et al., 1996; Dickie, Cutchin, & Humphrey, 2006; Jackson et al., 2010; Lawlor, 2003b, Yerxa, 1991). The design required me to enter the natural world of the participants with the intent of understanding and interpreting the participant’s life experiences in context. As is typical of researchers using a qualitative lens, I focused sharply on exploring socially and culturally embedded 54 everyday experiences, which are often taken-for-granted elements of life, in order to provide a rich description and analysis of experience. Issues of participant representation are of paramount concern to the qualitative researcher, as the approach results in an interpreted textual account of experience (Nightingale, 2008). As McLaren (1997) warns, qualitative researchers are “situated observer(s), located in material power and privilege” (p. 149). Consequently, we must recognize that any interpretation is embedded in the researcher’s own personal experiences, history, social class, gender, and ethnicity. I, therefore, employed critical self-reflection throughout all phases of data generation and analysis to counteract, insofar as possible, such concerns (Nightingale, 2008). Given my interest in exploring personally, socially, and culturally embedded complexities in the daily lives of people with SPMI and their impact on weight management issues, qualitative methodology provided an appropriate framing for this study. Through immersion in these participants’ worlds (to the extent possible), I was able to learn about their everyday experiences and life circumstances through dialogue and observation. The exchange that took place during this process between the participants and me helped to correct assumptions I had about their lives (Nightingale, 2008). These dialogues were especially important for me as a new scholar transitioning from clinician to researcher for, as Lawlor (2003b) indicates, this enterprise “requires and results in major shifts in identity and ways of understanding human experience” (p. 30). The potency of qualitative methodologies has also been recognized in understanding the meaning of disability and illness experiences from the participant 55 perspective (Clark, 1993; Frank, 1999; Mattingly, 1991; Sacks, 1987), rediscovering self in occupation (Clark, 1993; Clark, Carlson, & Polkinghorne, 1996; Padilla, 2003; Price- Lackey & Cashman, 1996), and illuminating practice experiences (Good, 1994; Mattingly, 1998a; Mattingly, 1998b). Using qualitative methods to explore the lives of people with SPMI is a relatively recent phenomenon, perhaps due to concerns with the ability of these individuals to convey experiences in a meaningful way due to symptoms of disorganization associated with neurological conditions (Davidson, 2003). However, the call for using qualitative research in intervention development for people with SPMI has gained momentum in the past decade, as evidenced in the following excerpt: For qualitative research to be most useful in informing the development of interventions to assist such people in reclaiming their lives, studies need to be based on the actual experiences of the people living with the conditions of interest, and as much from their own perspective and in their own terms as possible (Davidson, 2003, p. 29). Embedded in the overarching research question and interrelated aims of my study were possible questions about the meaning of the participants’ lived experiences. As Pickering (2008) notes, “experience…has to be approached carefully and critically because it is not simply equivalent to what happens to us…[experience] is just as much about what we make out of what happens to us” (p. 19). Participant Selection Strategies I recruited participants for this study using network and convenience sampling techniques. Prior to commencing recruitment efforts, my external committee member, Dr. John Brekke, facilitated entrée into the Los Angeles County Department of Mental Health (LAC-DMH) and Pacific Clinics Portals Division mental health system by 56 requesting my placement on an administrative meeting agenda to present my proposed research. At this initial meeting, I presented an outline of my proposed project and discussed the research design with those present to tailor my recruitment approach. At the time, my research plan pertained to people with a primary diagnosis of schizophrenia; however, the team indicated this was too limited, as weight management tended to be an issue for many of their consumers who had other primary mental health diagnoses. On ethical grounds, the team requested that I broaden my study population to participants with SPMI. With the support of my external committee member for this change to my original design, I sought and obtained approval from my dissertation chair and other committee members before proceeding. Upon receiving approval from the Institutional Review Board (IRB) committees at the University of Southern California, LAC-DMH, and Pacific Clinics, recruitment efforts commenced. First, I contacted the Director of Pacific Clinics Portals Division and provided information about the study. Second, I attended the Pacific Clinics Portals Division Program Director’s meeting to deliver a brief presentation of the study and arrange recruitment meetings with staff and consumers at their various programs. After introducing my research to administration at Pacific Clinics Portals Division, I collaborated with staff on the best way to recruit participants in various settings. In total, I was approved to recruit from a pool of three types of programs: residential substance abuse treatment, psychosocial rehabilitation clubhouse, and other independent living support programs. The two residential substance abuse treatment programs are located in two separate community residences where members live for one year to establish 57 sobriety. These programs have mental health workers and professionals on site. The clubhouse program is located in the same community and is staffed during business hours. In the staffed programs, I attended specific meetings for staff and consumers to present the study and provide recruitment fliers (see Appendix A) to them. Independent living supports such as the Assertive Community Treatment (ACT) program and the Transitional-Aged Youth (TAY) program consist largely of case managers who visit people in their homes. At these independent living support programs, I met with staff and supplied fliers to be distributed to potential participants to recruit for the study, as I otherwise did not have access to them. Interested potential participants arranged to contact me directly or, in the case that they did not have access to a telephone or email, staff agreed to assist with arranging a time and place to meet. As it turned out, all participants for this study were obtained from a local clubhouse program after problems with recruitment surfaced in the other potential settings. I began recruitment at the residential treatment programs for people dually diagnosed with SPMI and alcohol or substance dependence; however, recovery in the latter area ended up pre-empting study participation. For example, at the beginning of the study I conducted a focus group in one of the residential treatment settings. I obtained informed consent (see Appendix B) from each individual and administered an evaluation form to determine the potential participant’s capacity to consent (see Appendix C). All residents available at that focus group provided informed consent and completed the capacity to consent evaluation successfully. However, when I returned to this program to conduct a second focus group, the staff informed me that one of the residents had 58 relapsed and was now using substances. As a consequence, many of the other residents were in crisis over this event. I rescheduled the focus group and returned the following week. Upon returning to the setting, I found that during the capacity to consent process the remaining potential participants could not articulate the scope of participation, or what they would do if they wanted to withdraw consent or became distressed during the focus group. Furthermore, during this visit I noticed mental status fluctuations in several of the participants from the initial focus group. At this point I met with staff and we agreed that further enrollment from these programs was not appropriate. I next questioned whether or not it was ethical to include the data obtained from the original group. After meeting with my dissertation chairperson, I decided to not to include the information obtained from the five participants at the substance abuse treatment setting. Notably, the independent living support programs also proved to be unusable recruitment sites because in total they yielded only one interested participant who, when contacted to schedule a time to attend a focus group, decided against participation. Ultimately, the local clubhouse program provided the richest environment for recruiting participants who were living in the community, psychiatrically stable, and interested in volunteering for study participation. All participants met the following enrollment criteria: (a) at least 18 years of age, (b) able to speak fluent English, (c) received services during the time of the study through the public mental health system at one of four identified Pacific Clinic Portals Division locations, and (d) had an interest in weight management. I selected individuals aged 18 and above, as I was interested in the experiences of the adult population. Based on my 59 own language competency and that this study required that participants were able to relate experiences to me verbally, I was not able to support interviews conducted in languages other than English. Fortunately, the vast majority of people receiving services at Pacific Clinics Portals Divisions locations are English speaking. Enrolling individuals who received services at the four identified Pacific Clinics Portals Division locations ensured that the participants met criteria for SPMI and that they resided in the community. The decision to include people with an interest in weight management, versus those with an objectively weight issue (e.g., obesity measured by body mass index), resulted from guidance provided by my dissertation committee and my desire to develop both breadth and depth of understanding about weight management experiences. Individuals who did not meet the above criteria, were conserved under the provisions of the Welfare and Institutions Code 5350, or were determined unable to provide informed consent during evaluation were ineligible for this study. In the case that a person expressed interest, but was unable to provide informed consent as determined through the capacity to consent process, the participant was thanked for their interest in participating and provided compensation. Participant Description A total of 14 participants, 10 men and 4 women, volunteered to take part in this study. All participants met the criteria for SPMI and received services through the public mental health system. Each resided in the community and received governmental aid in the form of social security or disability benefits. Of the male participants, 3 were Caucasian, 5 were African American, and 2 were Hispanic. Of the female participants, 2 60 were Caucasian, 1 was African American, and 1 was Asian. As the study required indicating an interest in weight management versus meeting an objective criterion, self- report accompanied with informal observation was used to determine whether someone was underweight or overweight. Two participants in this study identified as underweight and appeared to be so, displaying a sunken appearance to the face, visibly prominent limb bone structure, and clothing that continually slipped from their bodies when walking. One participant appeared to be at a desired weight after undergoing gastric bypass surgery due to a history of morbid obesity. Four of the participants had approximately 20 pounds to lose, four had 30 pounds to lose, and three others had an excess of 40 pounds to lose. It was not possible to determine if their estimates of weight amount were accurate simply by observation; however, each of these participants was visibly overweight. To protect the anonymity of participants, all names used in this dissertation are pseudonyms. Given the number of participants and potential for someone choosing a pseudonym that was another participant’s actual name, I assigned them. The following scenarios are designed to provide a brief introduction to participants in this study, while maintaining their confidentiality. As such, the descriptions are broad, particularities few, and in some cases I have changed details to protect privacy while keeping as close as possible to original information. Nevertheless, I hope they provide a starting place for understanding their responses in later chapters. Antoine Antoine is a Hispanic man in his early 40s. He has type I diabetes and would like to lose approximately 30 pounds. Antoine enjoys cooking fried chicken, but he makes 61 vegetables or microwave meals most of the time. He misses being able to eat sweets and has a difficult time maintaining his diet due to temptations. Antoine lives alone in a subsidized apartment and is unemployed. He enjoys attending the clubhouse and walking. Calvin Calvin is an African American man in his mid-40s. He has approximately 20 pounds to lose and one of his favorite foods is honey-roasted nuts. He enjoys cooking likes to taste everything as he prepares it. He has tried over-the-counter diet pills in the past, but found that they didn’t work for him. Calvin resides in a subsidized apartment and is currently unemployed. He enjoys keeping up with politics via the internet and watching cable news channels. Carlos Carlos is a Hispanic man in his mid-40s. He resides in a subsidized apartment complex and enjoys taking bus tours. Carlos became interested in weight management when he started losing weight unexpectedly after the loss of a parent. He attributes his weight loss to grief and to not wanting to use the shared kitchen in his apartment building due to discomfort around the other residents. Carlos enjoys traditional Mexican foods, but feels he needs a woman to cook for him like his mother used to. Carlton Carlton is an African American man in his late 20s. He works part-time as an aide to older adults and lives alone in a subsidized apartment complex. He would like to lose approximately 20 pounds and become more physically fit and muscular in order to find a girlfriend. He uses alcohol and marijuana occasionally and is a voluntary member of a 62 recovery community. Carlton’s favorite foods include grilled steak with a baked potato or “soul food.” He enjoys riding motorcycles and theater acting. Charles Charles is an African American man in his mid-40s. He lives in a subsidized apartment complex. Charles identified himself as “a little bit” overweight, but was not sure how much he needed to lose. My most conservative estimate would be 40 pounds. He has multiple health problems including sleep apnea, high cholesterol, and hypertension. Charles volunteers as a stocker at a local business for an hour each day. His favorite food is hamburger and he enjoys playing video games and watching television. Gavin Gavin is a Caucasian man in his mid-50s. He enjoys all types of foods and treats himself once a week to a fast food hamburger meal. Gavin enjoys being a spectator at public sporting events and tries to keep track of athletes’ statistics on various teams. He currently lives in a subsidized apartment building and has been incarcerated twice in the past. He now volunteers part-time in a homeless shelter program. Gavin has successfully lost 15 pounds in the past two years and would like to lose approximately 30 more. He has high cholesterol and is fearful of having a stroke, heart attack or developing diabetes due to his weight. Hakim Hakim is an African American man in his early 40s. He is interested in weight management because he has approximately 20 pounds to lose. Hakim is a practicing vegetarian and enjoys eating light; however, he is in school and is not always able to eat 63 the way he prefers when not at home. Hakim has a history of heroine abuse and although he has been free of illicit drug use for many years, he reports frequent cravings for sweets. Hakim lives in a subsidized apartment with his girlfriend and he enjoys working out and going to the beach. John John is a Caucasian man in his mid-50s. He is interested in losing approximately 30 pounds. His favorite food is ice cream and he enjoys going to the movies. John has a history of homelessness due to eviction after excessive hoarding made his apartment uninhabitable. John currently lives alone in a subsidized apartment and is seeking employment as a back-up musician. Judy Judy is an Asian woman in her mid-40s. She lives in a subsidized apartment building with a roommate. Judy is currently comfortable with her weight, after having gastric bypass surgery six years ago. Prior to the surgery, Judy weighed approximately 300 pounds and today she weighs approximately 150 pounds. She loves all kinds of food and soda, but finds she can’t eat as much as she used to and she avoids spicy foods entirely. Judy enjoys walking and being active. She volunteers part-time greeter for a local business. Kevin Kevin is an African American man in his late 50s. He lives in a subsidized apartment building and has a volunteer part-time job assisting with activities. Some of his favorite activities are watching sports on television and playing fantasy football. He was 64 extremely athletic earlier in life, but due to a degenerative joint condition is no longer able to participate in sports. Kevin has difficulty maintaining his weight and finds he has to continue putting more notches in his belt. He enjoys eating and his favorite food is steak. Although Kevin is underweight currently, he has a history of high cholesterol. Laura Laura is a Caucasian woman in her mid-50s. She resides independently in a subsidized studio apartment and has a history of homelessness. She abused alcohol, cocaine and heroine in the past and has been clean and sober for over two years. Prior to achieving sobriety, Laura was in a relationship for 20 years with a man who abused her. Currently, she is interested in helping other addicts and is seeking employment in a recovery community. Laura is an avid reader and she enjoys watching movies. Laura would like to lose 30 pounds and her favorite food is pizza. Paul Paul is an African American man in his mid-40s. He enjoys listening to music and going for rides around the city with his friends. Paul lives in a subsidized apartment with his roommate and best friend. Paul has lost 20 pounds, but has approximately 50 pounds yet to lose. He attributes his weight loss thus far to increasing his fruit and vegetable intake. Sarah Sarah is an African American woman in her late 30s. Although she has 40 pounds yet to lose, she had successfully managed to lose approximately 25 pounds when I met her. She has a history of unspecified substance use and attributes her weight problem to 65 switching addictions from illicit drugs to food. Sarah enjoys home cooking and likes to prepare meals for others. She lives in a subsidized apartment and has a part-time volunteer position as a receptionist at a local business. Her favorite activity is learning, either from taking classes or studying topics of interest on her own. Susan Susan is a Caucasian woman in her mid-30s. She lives in a subsidized apartment and has a steady boyfriend whom she sees regularly. Susan enjoys exercise and has not had a weight problem until recently when she underwent bladder surgery and became depressed. She estimates she has 20 pounds to lose to reach her desired weight. A further complication is that Susan feels her neighborhood is unsafe and this has contributed to fear of riding her bike or walking outside alone. She enjoys going out with her friends and takes art classes at a local community education program. Currently, she is working on writing a book of poems. Data Generation I used multiple approaches to generate data for this study. All of the participants engaged in audio digitally recorded focus group interviews designed to give breadth to the study. I conducted four focus groups lasting from 1! to 2 hours each. In addition to the focus groups, four of the participants engaged in an audio digitally recorded individual semi-structured interview lasting from 2 to 3 hours and a participant observation session termed “activity visit” lasting 2 to 4 hours. Activity visits were not audio recorded, as these events took place in various community settings not amenable to recording and the purpose was to “hang out” with the participant as they went about 66 typical activities. Examples included perusing books and exploring resources at a local library, going to a video store, having breakfast, editing a book chapter, using the internet, visiting a local movie studio, searching for free materials for an art project, and checking inventory for work at a local homeless shelter. I made written notations following each activity visit to be used in concert with interview transcripts during data analysis. During the data generation process, I focused on the complex interactions between participants weight management experiences, their activities and context. Combining focus group interviews with individual interviews and participant observations provided different lenses through which to understand participant’s perspectives and afforded a deeper, more nuanced appreciation of their experiences in daily life. Relationship and knowledge development in qualitative inquiry. In qualitative research, interviews are used to produce knowledge and to gain an understanding of participant’s perspectives and experiences in relation to a topic of mutual interest (Kvale & Brinkmann, 2009). Approaching the interview process from a postmodern epistemology results in a generative view of knowledge as constructed through interactions amongst researcher and participants. The need to reduce hierarchical relationships is particularly important in qualitative inquiry (Nightingale, 2008). Power relations are always at work in research; however, the qualitative investigator must give especially careful consideration to this power dynamic in order to forge a collaborative relationship for the co-construction of 67 knowledge. I believe issues of power are particularly potent for people who are considered to be vulnerable or those have been marginalized in some way; therefore, I endeavored to provide opportunities for equal participation in the research process and reduce hierarchical relationships to the extent possible (Nightingale, 2008). Rapport, while commonly referred to in qualitative research, became a contentious notion in the anthropological rhetoric of the 1980s and was largely replaced by a notion of collaboration (Marcus, 1998). The move to collaboration was intended to create a more complex view of fieldwork relationships than the concept of rapport- building allowed by showing that boundaries are negotiated between researcher and informant. However, Marcus finds within this a broader issue, which has relevance to my study in particular: the notion of complicity between researcher and participant. While Marcus acknowledges that complicity is more ethically loaded than concepts of rapport and collaboration, he takes the concept of complicity away from the Oxford English Dictionary’s definition of “partnership in an evil action” and reframes it as a complex relationship to a third party (p. 122). This ‘third other’ as envisioned might encompass the political economy, colonialism, or a shared social realm. For Marcus, the concept of complicity in fieldwork can be used to establish “strong affinities between researcher and participant in relation to a shared world or arena of discourse [that] will not allow for a distancing relativism in the field” (p. 123). Building trust early on was crucial, as I expected participants to share intimate details of their lives with me during this study. Although I have extensive experience working with people who have SPMI in community-based clinical and non-clinical 68 settings, which may have been advantageous in some ways, I anticipated that participants might be wary of my role as a researcher or my professional background. I imagined that past relationships with medical professionals and stigma encountered in social service settings and the broader community, could especially pose problems with establishing a collaborative relationship. Further, I was concerned that the personal and social differences that participants may perceive as existing between us could contribute to a desire for distance. Armed with musings about the notions of power, rapport, collaboration, and complicity, I set out to establish a working relationship with the participants. I met with participants in person when possible during recruitment efforts and I shared information about myself with them. Following each recruitment meeting, I mingled with potential participants, answered questions, and tried to get to know a little bit about the people who were considering participating in the study. I made sure to arrive at focus group meetings 90 minutes prior to their scheduled beginning. I used this time to complete informed consent documents with participants and to acquaint myself with the setting, staff and members. Given my prior knowledge of terms used to describe consumers of mental health services in various settings, I was careful to use the appropriate term “member” when referring to clubhouse participants. With some participants this was particularly important, as reflected by one participant who told me toward the end of the focus group “when you said ‘member’ I thought to myself, she gets it!” 69 Prior to beginning each focus group process, I asked the participants whether or not they had ever been involved in research studies before. Each time, at least one person indicated that he or she had. I used this information as a springboard to talk generally about different types of research and explained that in this type of study, the participant is the expert on his or her experience. I attempted to liken this difference in power between the way one feels when attending a medical appointment with an expert doctor and the way one feels on their “own turf” such as the clubhouse. We then briefly discussed the differences between what I simply termed “formal interviews” and “conversational interviews.” Although I acknowledged a certain formality to research by nature, I invited participants to view themselves as co-investigators in a conversation about weight management. The formal aspect of our conversation as a research group was reflected in following ground rules such as that only one person should speak at a time. Finally, I described in detail how the information provided would be used and how participant anonymity would be protected, before reminding them that their engagement in the research was entirely voluntary. During the focus groups and interviews, issues of complicity frequently arose and provided special opportunities for relationship building. One of the best examples was the frustration I shared with the participants related to negotiating the healthcare system to obtain needed services. When a participant described such frustrations, I listened empathically and would occasionally share a brief story about a similar personal experience. Conversations like these often precipitated a more in-depth and passionate discussion from the participant or other group members. The notion of complicity was 70 even useful in areas where I lacked personal experience (e.g., being homeless), as we related commonly to issues of economic downturn and shifts in financial stability. Focus group interviews. Five to six participants were scheduled for each focus group in anticipation that that someone might not attend or would be otherwise unable to participate due to psychiatric instability. A total of four focus groups were conducted. Three of the focus groups had four attendees. Although four participants had been scheduled for the fourth focus group, one of the participants did not return to the focus group after all participants had been consented and a second participant declined participation when it was determined that weight management information was not going to be provided at the meeting. Thus, I had to make a determination about running a small group with two participants and I did so on ethical grounds that these participants had consented and still wished to participate in the study. I obtained informed consent prior to commencing each focus group with the process lasting approximately 10 minutes per potential participant. I read the consent document to or with each participant and provided him or her with an opportunity to ask questions. To ensure the participant’s capacity to give informed consent, I engaged in conversation with the participant about the research and asked the participant to repeat facts about the proposed study (Posever & Chelmow, 2001). Once the participant’s questions about the study had been answered and he or she demonstrated understanding of the research, I obtained his or her signature on the consent form and provided the participant with a copy of the document. 71 In this study, focus groups were used as an entry point for participation and data generation for three reasons. First, beginning with a focus group afforded participants an opportunity to get to know me in a group setting. I hoped this would reduce feelings of discomfort that they might experience if we were to initially meet one-on-one. Second, focus groups provided an efficient vehicle for gathering a substantial set of participant perspectives on weight management and to observe similarities and differences in their ideas and expressed experiences (Morgan, 1997). This format provided breadth and allowed me to immediately begin to formulate ideas about related and disparate issues in the field rather than relying on building connections between many individual interviews post hoc. Third, the interaction inherent within focus groups led to deeper discussions than may have occurred in individual interviews, especially “for topics that are either habit-ridden or not thought out in detail” (Morgan, 1997, p. 11) such as eating and related everyday activities. At the close of each focus group, I asked for volunteers who were interested in the individual interview and participant observation (“activity visit”) portion of the study to provide me with their contact information. A focus group script (Appendix D) was used to lay ground rules for the group and to provide a broad framework for questions and topics of concern in this study. Frequently, questions and topics arose organically and thus, the interview guide served only as a beginning template for discussion. Semi-structured interviews. During the informed consent process, the participant was told about the possibility of being asked to engage in an individual interview and activity visit with me in the 72 future. Of the 14 participants in the focus groups, 9 provided their contact information. Purposively, I used judgment to select individuals from the focus groups who were likely to add rich information about issues of central importance to the study (Patton, 2002). I contacted six participants for this phase of the study and four participants volunteered. Interested parties were contacted by telephone, email or by a message provided by staff for the participant to contact me to schedule an individual meeting. Interviews were scheduled at a time and location of the participant’s choosing. During this interview I hoped to elaborate on the data generated in the focus group and probe more deeply about weight management issues, health and activity in the participant’s life. I also set out to gain a sense of how patterns of thinking, self-image, identity, attitudes, desires, priorities, ascribed meaning, stress and illness experiences, and social relationships affected their approach toward these activities. When possible, I asked participants to share personal artifacts with me to assist with exploring details of their lives (Bagatell, 2003; Llewellyn, 1995). In two cases, I visited participants in their homes making this possible. Reviewing pictures, books, awards, school assignments and writings were a few of the items that participants chose to share. Although an interview guide (Appendix E) was developed as a starting point for these semi-structured individual interviews the interview also built upon topics discussed by each individual that had emerged during the focus group. Prior to conducting an individual interview, I reviewed the appropriate focus group transcript and listened to the audio recording to familiarize myself with the particular information previously shared by the participant. In so doing, I was able to enter the individual interview with 73 recollections about their personal life circumstances, which provided the ability to obtain deeper information on particular topics and explore new areas for discussion. This process of adaptation in the field is desirable and speaks to the emergent process of qualitative research. Participant observation activity visits. Co-participation in activity between researcher and participant can complement the interview process by allowing direct interaction in context and reducing power relations inherent in research (Nightingale, 2008). By doing activities with participants in their natural settings, I hoped to have an opportunity to observe and discuss additional contextualized lifestyle issues (e.g., habits, routines, activity types, activity patterns and demands, environments, and sociopolitical factors) that contributed to weight management issues in their lives. Each participant, based on his or her daily routines and interests, chose the activities in which we engaged. Two participants invited me to their homes before proceeding with other activities (e.g., visiting the library, going to a video store, having breakfast). A third participant asked me to meet him at work, and the fourth participant took me to what he considered to be his work and then to a favorite store to obtain supplies for a creative project. Interviews during participant observation activity visits were unstructured and dynamic occurring spontaneously. In most cases, I determined that notetaking or recording during the activity visits was counterproductive to remaining immersed in the experience and would likely have resulted in discomfort for myself and potentially for the participant. As a result, fieldnotes were recorded immediately following the activity visit 74 with a description of the events, my impressions, reflections, and feelings about what had occurred. The data generated from activity visits were used in concert with information obtained during focus groups and individual interviews to provide a deeper view of particular participant’s experiences in daily life and how they impacted weight management. Data handling and transcription. Data for this study was recorded on a ZOOM-H2 digital recorder, which provided surround sound capabilities for focus group recording and individual interviews. Data was recorded in high quality onto a Secure Digital (SD) memory card that allowed for up to 4 hours of continuous recording and subsequent digital storage in .AIFF or .MP3 format. Upon completion of each interview, the audio file was downloaded to a password protected laptop computer for storage until it had been transcribed. The audio file itself was also password protected. The SD memory card information was deleted immediately after information was downloaded as an additional precaution. All audio digitally recorded interview data was transcribed verbatim, retaining pauses, laughter, and other expressions of emotion. To ensure time for transcription and review prior to the next focus group, I enlisted the aid of a professional transcriptionist. Files were transferred over a password protected secure server to which only the transcriptionist and I had access. Following transcription of the data, I reviewed each transcript and compared the text with the original recording to ensure accuracy and insert expressions noted during the interview. In sum, a total of four focus group interviews and four individual interviews were conducted resulting in approximately 750 pages of 75 transcribed text. Using a professional transcriptionist was especially advantageous, as the expedited turn-around time for this type of recording was 3 days or less. As a result, I was able to listen to the digital recording and review the transcript when the event was still relatively fresh in my mind. This procedure provided me with an opportunity to shift my approach to the next focus group based on what I had learned through review of both the audio and written interview files, fieldnotes and memos. All data communications between my dissertation chairperson and myself were sent via password protected documents, in which the password to access each document was sent in a separate email message or provided verbally in a private setting. Any additional transfers of information between my chairperson and myself were conducted in person in the privacy of her home or work office. Digitally recording the focus groups and interviews had several advantages. First, the device was designed to record surround sound and was sensitive enough to pick up multiple voices during group discussions. Second, given that a large portion of data in this study involved group participation, the small device and stand provided a discrete means of recording without having to change cassette tapes. Third, the high quality capability of the device made it possible for individuals to be heard without having to don personal microphones, which may have decreased participant comfort during the interview process. Fourth, the recording device allowed me to divide recordings into segments if a participant accidentally mentioned a person’s name, a particular location, or a circumstance that may impact his or her anonymity. Therefore, I was able to separate 76 sections of certain recordings that would not be appropriate for professional transcription and handle these personally. Data Analysis The iterative process of qualitative inquiry involves a tacking back and forth between data generation and analysis, while reading literature relevant to emerging themes, and writing (Baszanger & Dodier, 1997; Goodall, 2008). As such, my analysis began during the data generation phase of the study and doing so allowed me to determine directions for subsequent data generation efforts. I will now discuss my particular approach to data analysis. Coding. Coding refers to the step in the analytic process whereby a researcher begins to search and ascribe meaning to the data (Charmaz, 2008). While this term first emerged in the grounded theory literature, it is currently used in a more universal way by qualitative researchers to discuss a variety of approaches. Thus, in this section I describe the approach I used to assign codes and attempt to make meaning of the participants’ experiences with weight management. As described by Charmaz (2008), initial coding consists of “defining action, explicating implicit assumptions, and seeing processes” (p. 216). Upon completion of the each focus group, I read the transcript noting brief action-oriented insights in the margins of the text by hand. In some cases, I found it challenging to separate one participant’s quote from another due to the interaction present in the focus groups around a particular topic. When this occurred, I focused on coding a chunk of data. Throughout the analytic 77 process, I looked for comparisons between the data and codes generated. This allowed me to recognize points of similarity and divergence between the participants’ experiences. After completion of the third focus group, I found that the data generated was becoming voluminous and difficult to manage by hand; therefore, I decided to load each transcript into a spreadsheet file. This allowed me to work with multiple codes and interviews and organize the data in myriad ways according to shifting categories. Further, it provided an easily accessible, transportable log that I could review with my dissertation chair and my writing partner for feedback. As new codes emerged and I began to discover new leads and challenges to my own assumptions, I continually returned to the data to refine my categories and attempt to identify themes that more fully captured the experiences of the participants. The iterative process of data generation and analysis, while daunting, allowed me to conceptualize meanings, processes and contexts in new ways before embarking on the individual interviews and activity visits. A similar process to the aforementioned was used to initially analyze individual interviews. I specifically focused on identifying brief action-oriented insights, paying particular attention to areas of divergence or similarity with codes that had emerged in focus groups. Further, at this stage of analysis, I attempted to refine my categories by developing “increasingly abstract ideas about research participants’ meanings, actions and world and seeking specific data to fill out, refine, and check the emerging conceptual categories” (Charmaz, 2008, p. 204), which are typically referred to as themes in 78 qualitative research. These overarching themes and subcategories shifted further throughout the analytic writing process, ultimately resulting in the development of the findings reported in Chapter 4. In addition to the coding process used for analysis, I also constructed stories of the four participants who chose to engage in the individual interviews. Data from the focus groups, individual interviews and activity visits were used to inform this phase of analysis. These stories are represented in Chapter 5 with the intent of providing greater depth into the specific challenges encountered by a subset of the participants. It should be noted that qualitative research is a constructed and interactive process and therefore analysis is not neutral or objective. Rather, the researcher endeavors to pursue emergent theoretical questions that shift the direction of inquiry in unanticipated ways. During the process of data generation and analysis, a disability studies perspective emerged as an informative framework for exploring the worlds of these participants due to the importance of addressing collective social justices issues and contextualizing individual experiences. As is typical in qualitative research, the ontological framework was unanticipated and surfaced during the course of the study. Fieldnotes. Immediately following each interaction, I recorded descriptive fieldnotes about the experience to capture my observations and reflections (Sanjek, 1990). Fieldnotes were either audio digitally recorded or written by hand and contained a detailed description of the activities we engaged in, the settings, events that took place, and my musings about our interactions and intriguing things observed. I used fieldnotes in 79 conjunction with interview transcripts during analysis to enrich my understanding of participant’s experiences and perspectives. Again, I analyzed for commonalities and divergences between the participant’s perspective and fieldnotes taken after observation to gain a deeper understanding of the complexities of the participants’ experiences. In-process memos. I constructed what Clifford (1990) calls “description…a turning away from dialogue and observation toward a separate place of writing, a place for reflection, analysis, and interpretation” (p. 52). This process, as Clifford describes it, might be considered akin to developing theoretical or in-process memos. These memos served as part of the data analysis process and provided me with an opportunity to hypothesize about findings and search for deeper meanings in the texts and interviews when questions arose. These in-process memos became part of the data generation and analysis process and were used in conjunction with transcripts and fieldnotes during the writing of this dissertation manuscript. Interpretive Sufficiency of the Study Patton (2002) states, “finding truth can be a heavy burden,” (p. 578) in his recount of a student’s experience with paralysis over writing an evaluation report because of the student’s concern over the accuracy of his own interpretation. This story resonated with me as a novice researcher and I remember having these thoughts when preparing my master’s thesis, which was also qualitative in nature. While I do not see concerning oneself with discovering and reporting the truth as a “bad” thing, I do perceive it as a bit misguided. Studies, whether experimental or qualitative, are localized and thus the 80 generalizability of both quantitative and qualitative research may come into question. In this study, I endeavored to make discoveries and interpretations that honored the experiences of the participants, might be useful to people with similar interests, and would contribute to what is known about people living with SPMI and weight management issues. The shunning of ultimate scientific truth is not meant to imply that the findings of any study, including this one, cannot be applied in ways to a broader population. Extrapolation, originally conceptualized by Cronbach and Associates in the early 1980s and summarized for qualitative researchers by Patton (2002) more recently, can be defined as “modest speculations on the likely applicability of findings to other situations under similar, but not identical, conditions…logical, thoughtful, case derived, and problem oriented rather than statistical and probabilistic” (p. 584). While I recognize that my findings are not generalizable to all people with SPMI and weight management issues, extrapolating findings to others in similar situations in this community is a reasonable goal of this preliminary research. In the current historical moment in qualitative research termed the “fractured future” (Denzin and Lincoln, 2008, p. 3) situated within pragmatic and constructivist paradigms, issues of rigor, validity, dependability and saturation are often contested terms. In the past, these concepts have been related to realism and truth and thus, qualitative researchers situated in this historical moment may argue against the appropriateness of their use (Charmaz, 2008). However, a researcher must have some criteria by which to measure the sufficiency of a study, and for this, I turn to Charmaz’s 81 (2008) criteria for grounded theory in social justice inquiry: credibility, originality, resonance and usefulness. While the reader ultimately determines whether or not I have sufficiently interpreted the data in a complex manner, I will now provide an explanation of how I attempted to meet these criteria. I have tried to show evidence of credibility in my study by relaying intimate knowledge of the participants and their life circumstances relative to weight management. By using multiple methods for data generation and providing in-depth quotations to support my analysis in Chapters 4 and 5, I have attempted to supply sufficient information to support the theoretical claims made in Chapter 6. During the data generation and analysis process, which included coding procedures, story development and previous iterations of this dissertation manuscript, I made repeated attempts to systematically compare data and categories to determine points of commonality and divergence. This approach allowed me to refine categories and ensure connections between the original data and the more abstract themes. During this process, I relied on expert audit review in the form of meetings with my dissertation committee chairperson, which helped me by challenging representations of the data and emerging themes throughout the course of generation and analysis. Further, I engaged in self-reflection and shared insights as they arose about my personal engagement in the study to capture my perspectives, feelings and biases. In this dissertation, I have attempted to make my involvement in this study as transparent as possible by providing discussions of personal experiences encountered. 82 The concept of originality is addressed through analysis that extends current conceptions of the ways in which weight management issues manifest in daily life for these participants with SPMI. Specifically, a complex interaction of lifestyle circumstances is highlighted and issues of personal responsibility are viewed within the larger socioeconomic and sociopolitical structure. New insights are offered about the embodied experiences of disability in this group and factors that drive motivation for change. Barriers to weight management are explored from the perspective of stigma experiences, survival needs, supports available and service provision. Further, domains of concern that emerged from the data have theoretical significance for those who are interested in intervention development and social change. The concepts of resonance and usefulness are dependent upon the strength of credibility and originality in the study. To determine whether resonance and usefulness have been adequately addressed in a study, the reader might question whether the interpretations offered make sense, provide insights, bridge issues of social context and individual experiences, and illuminate useful interpretations for everyday life. Ethical Responsibility Participating in a qualitative research endeavor is rife with risks and benefits may be few. Revealing in-depth information about personal experiences with weight management in one’s daily life is not a task lightly undertaken. As a member of a small sample with a high degree of specificity in terms of circumstances and language, the possibility that one might be recognizable to a reader must always be one of the researcher’s central concerns. 83 During this study, I took every necessary precaution to minimize the exposure of the participants to any member outside of the research team. Given the nature of qualitative reporting, anonymity cannot be promised; however, I informed participants of this at the time of the study commencement and assured them I was committed to ethical conduct. I maintained confidentiality of the research materials by ensuring that pseudonyms were used on all transcribed materials and asked members not to identify each other by name on the digital recording. In the final write-up, I altered locations of certain events and personal details in order to protect the confidentiality of all participants. In terms of data handling, printed research materials were kept in locked filing cabinets and all digitally encoded files were password encrypted. Informed consent was obtained from each participant, in accordance with the Institutional Review Boards at the University of Southern California, Los Angeles County Department of Mental Health, and Pacific Clinics, and this was the only place the participant’s full name appeared on any documentation. These documents were kept separate from all other study materials. I informed participants that they should refrain from associating themselves with my study in order to protect their anonymity. When in the community with participants, they were instructed to introduce me as a friend or in some other fashion that would make them most comfortable. Some participants chose to introduce me to acquaintances as “my friend Abbey” or “just a student I’m helping out from USC.” 84 About the Researcher In qualitative research, the investigator is acknowledged as an active participant in the research process and, thus, the perspectives the researcher brings to the study have particular salience and become part of the data. The interpretative nature of my research approach requires that I make transparent my experiences and reasons for pursuing this topic. In this section, I will describe my philosophical viewpoint as a clinician and researcher, my personal relationship to the study topic (i.e., a personal experience with significant weight gain and my attempts to overcome it), and some challenges I faced during the course of this research. In so doing, I aim to provide the reader with an opportunity to interpret the findings within the context of who I am and what I brought to this project. I am a Caucasian, single, female occupational therapist from the Midwest region of the United States. My main focus as a practitioner has been community health and, although I have worked extensively with adults diagnosed with mental illness, I have long considered myself a generalist. Throughout my clinical career, I have never understood the divide I perceive as characteristically existing between mental and physical health occupational therapy. To me, promoting human flourishing is a main goal of occupational therapy and this cannot be achieved without a focus on everyday activity that links emotional and physical heath. Further, I have a strong interest in issues of social justice for underserved populations. Whether providing services in an arena traditionally defined as a mental health program (e.g., assertive community treatment, traditional case management, jail diversion, day treatment), a physical disability-oriented 85 venue (e.g., hospital, home health, skilled nursing facility), or teaching at a university, my approach is driven by an appreciation for the intersections of everyday activity and context as they relate to health and well-being. In fact, one of the forces that led me to pursue doctoral study at the University of Southern California was the alignment of my own professional vision with that of occupational science, a discipline that eschews mind-body dualism and recognizes the interrelatedness of doing and context in everyday life. Over the past four years, I have had the opportunity to be immersed in the study entitled, Health Mediating Effects of the Well Elderly Program (R01 AGO 21108-01), and my experience with this research is, in part, what has led to my interest in this research topic. Another reason I chose to study this topic is personal. During my first two years of full-time teaching, I gained over thirty pounds. The weight-gain was insidious and I did not realize how overweight I had become until I saw a photograph of myself. Having never had a weight problem, I wasn’t sure what to do. At first I could not figure out what I might change in my daily life to combat what had become a serious problem. Upon reflection, I can identify many factors that likely contributed to the weight gain. My metabolism probably slowed due to age, poor diet and lack of exercise. I was working long hours and constantly skipping meals or eating whatever food was readily available on campus. I would forego exercising and other forms of active leisure in favor of completing work-related duties, which often required more sedentary activity (e.g., sitting at a computer for extended periods, attending meetings) than my previous clinical 86 positions had. In short, my habits, routines, and life circumstances resulted in a significant amount of weight gain. While watching television one evening, I saw an advertisement for the Discovery Health National Body Challenge (England, 2007). This program offered a free 3-month gym membership to any person willing to weigh-in at a local shopping center. After much deliberation, I attended the weigh-in and obtained my membership. During my first trip to the gym, I lasted less than five minutes on the elliptical machine. Although I left the gym too embarrassed to do anything else that day, I felt like I was on my way out of a deep hole. Later that week, my sister called and suggested that I hire a personal trainer to learn how to use the equipment and how to eat properly. I adjusted my budget to afford two sessions per week for one month. Hiring a personal trainer resulted in learning how to eat correctly and use the gym equipment. Although she pointed out specific and practical changes to my workouts and dietary decisions, I was often overwhelmed with incorporating the changes into my life. Intellectually, I understood the concepts she taught me (e.g., balancing caloric intake and energy expenditure, reading labels, reducing fat intake, improving muscle mass to burn fat), but it took a supreme effort to modify my lifestyle. In the first few months of my new weight loss regimen, I recall wishing that the trainer was with me when I was grocery shopping, preparing meals, or eating. I worked out in the gym at least three times per week and changed my diet, but it took four months to begin losing weight. Prior to that, I had many moments where I felt 87 hopeless and wanted to quit and during these times, support from family and friends was essential. When I finally started losing weight, I realized that everyday tasks (e.g., completing yardwork, carrying laundry upstairs, cleaning) were becoming easier and that I had been compensating for months unaware. For example, I had been leaving stacks of clothing on the folding table in the basement and going downstairs every morning to get dressed. Even with my occupational therapy background, I didn’t notice how my weight had impacted my daily activities or vice versa. Today I am at a weight that suits my frame and my health and quality of life are better for it. While my weight might fluctuate a bit from time to time, I have reached a state of comfortable equilibrium in my everyday life. I am proud to have gone from someone who ate fast food regularly and could not last five minutes on an elliptical machine a few years ago, to someone who eats healthy and has completed a 26.2-mile foot race in just over five hours. The marathon was certainly an accomplishment, but here is the true lesson in all of this for me; what we do in our day-to-day lives is complex and these particularities deserve attention. Accomplishing the improbable is not just for special people who possess unworldly talents. With support, we can change in unanticipated and extraordinary ways by shifting our habits and routines in the course of everyday living. This experience, coupled with my commitment as a scientist to the health and quality of life of people with SPMI, led to the development of this study. In my opinion, lifestyle change for weight loss is multifaceted for any person, regardless of perceived 88 ability or. I hope that my research provides a first step in the development of an intervention for people with SPMI and, specifically, illuminates the complexity of everyday experience and life circumstances to weight management. Although I have experience with being overweight similar to many of my participants, we were dissimilar in other ways. For example, I have never been diagnosed with a SPMI, lived on governmental financial support, or received public health system services. I empathized with the constant challenges faced by participants in my study; however, I frequently realized how distant from their experiences I was. While issues such as homelessness, incarceration, substance addiction and abuse encountered throughout one’s life were not completely foreign to me due to my history of working as a clinician, I found myself caught between my roles as a researcher and occupational therapist. At times, I struggled with wanting to intervene and knowing that I could not. For example, several of the participants didn’t know how to cook and I was unable to teach them. My role as a researcher dictated a level of listening and participating with people, but I could not use my clinical skills to assist them with making adaptations. Another complication arose when I was on an activity visit with a participant who became increasingly inappropriate with me as we engaged in community activities together. Initially, the participant asked me if we could “maybe be friends after this [research study].” This type of situation occurred infrequently in the past when I worked as a clinician and I had a fairly standard response about professionalism and the therapist- client relationship that seemed effective in shifting the conversation if needed. I discussed the ethical implications of pursuing such a relationship and informed the participant that 89 this would be inappropriate. The participant stated that he understood, but as we continued to shop he repeatedly brought up the subject of “friendship.” When rebuffed again, he apologized and again said that he understood my position. At the end of the activity visit, the participant asked me to reconsider being “friends.” At this point I responded firmly telling him that I was becoming uncomfortable with his repeated questions about this topic. He laughed and quickly followed that up with “well, if not friends, then how about a one-night stand?” If the activity visit had not been over, I would have ended it prematurely at that point for my own comfort and safety. Although I had taken precautions by planning to call an acquaintance on the way to and from the appointment, no one knew where I was nor did anyone have the name of the participant because I was protecting his anonymity. Given the events of this activity visit, I resolved to put safeguards in place for my personal security. Upon returning home, I contacted my advisor and explained the situation. Fortunately, my emotional discomfort was the extent of the problem that day. I decided I would communicate to her exactly where and with whom I would be going in the future. The fact that participants had my personal mobile phone number was also a concern, as this was linked to my home address and accessible on the internet. Although listing my phone number on the informed consent provided participants with the required 24-hour contact number, it did not protect my privacy. It would have been advantageous to have a designated mobile phone for the study. In hindsight, these details seem obvious and I wonder if my lengthy history of working with people in the community undermined my consideration of security issues. 90 It felt natural for me to visit participants in their homes as I had in previous clinical positions; however, in those situations I carried a phone that would instantly link me to other staff members. Further, my supervisor or co-workers were always aware of my location. Another problem arose during the course of my study, when I became aware that women were represented less often than men in the focus groups. Having had exhausted the volunteer possibilities at the clubhouse program, I was unable to seek additional women for participation. However, since males are underrepresented in weight management research and this type of study does not aim for a representative sample, I made a determination with my advisor’s consent that the data obtained would still prove useful for the purposes of my research. A final concern worthy of mention is the aforementioned difficulties with recruitment efforts. Obtaining participants from some of the programs (e.g., community- based residential treatment facilities for substance abuse) proved difficult and a determination had to be made about whether it was ethical to use the information obtained in a focus group conducted there. Ultimately, the participant’s focus on achieving sobriety and maintaining psychiatric stability was more important than exploring the topic of weight management at this particular point in their lives. As such, I removed the data from five participants and ceased recruiting at these locations. Recruitment efforts in the independent living programs were time consuming and largely fruitless and it was eventually determined that the clubhouse program provided the most advantageous venue for obtaining participants. Originally I believed that with such a 91 large pool from which to seek potential participants that I would be overwhelmed with volunteers for the study. Unfortunately, this was not the case and recruitment was a daunting process despite program support for this research endeavor. Nonetheless, I was able to obtain a sufficient number of participants for the study by sustained recruitment efforts over time. Conclusion This chapter described the methods used in this research. Specifically, I have reviewed the methodological approach, theoretical foundations and rationale, participant selection strategies, and data generation and analysis process. Additionally, I have provided a framework for determining the interpretive sufficiency of this study, reviewed ethical considerations, and revealed information about myself in order to provide the research audience with necessary information for determining the integrity of this work. 92 Chapter 4: Desire for Change and Obstacles to Weight Management Weight management issues for people with SPMI are due to complex interrelated factors. As specified in Table 1, this chapter is devoted to discussing themes and subcategories that emerged during the coding process described in the previous chapter. This analytic process was designed to give breadth to the study, while the upcoming analysis in Chapter 5 will focus on providing depth through the personal stories of particular participants. Table 1 Overarching Themes and Subcategories Related to Weight Management for Participants with SPMI Theme Subcategories Embodied encumbrance: Factors affecting a desire for weight change Fear of health problems experienced or anticipated Stress related to appearance and impact on social life Frustration with engagement in everyday activities Barriers to weight management: Stigma, survival, support and services Weight-ism: Size discrimination and internalized views of self Navigating everyday needs: The survival struggle Weight management recommendations: One size fits none Service changes: The absence of activity Embodied Encumbrance: Factors Affecting a Desire for Weight Change First, I will provide an overview of factors affecting a desire for weight change in the lives of these participants. While a disability studies theoretical framing typically 93 foregrounds the importance of social factors in the lives of those who have been oppressed, Davis (2001) reminds us that seeking meaning in bodily experiences of illness requires attention to the lived body and the relationship of the individual in everyday relationships. Although social oppression is a dominant factor in the lives of these participants, the illness experience itself can be conceptualized as oppressive and having to do with the “pain or discomfort of bodies” (p. 135). Little is known about the factors that may press people with SPMI toward a desire for weight management because of the lack of research seeking their perspectives on this topic. As such, participants in my study were asked about how weight management became an important factor in their lives during the focus groups. All participants in this study had an interest in weight management per the inclusion criteria. Although each person brought a unique perspective to the reason for wanting to manage his or her weight, coded data of participants’ responses resulted in an overarching theme and subcategories that described the desire for addressing weight management in their lives. Specifically, participants’ interest was often driven by a notion of what I have termed embodied encumbrance, which generally connotes experienced fear, stress and discomfort relative to weight issues and body image. A tension between the experience of one’s body and the desired self undergirded the participants’ need to address weight management at this particular point in life. The subcategories of this theme included the following: (a) Fear of health problems experienced or anticipated, (b) Stress related to appearance and impact on social life, and (c) Frustration with engagement in everyday activities. These 94 subcategories are mainly descriptive to lay a foundation for the remainder of the study and thus, brief exemplars are used in each section. Fear of health problems experienced or anticipated. Fear and stress were acknowledged as powerful motivators for change in the lives of many of the participants. Frequently, participants’ fear related to health issues either experienced or anticipated. Consistent with the high degree of metabolic and cardiac problems related to excess weight in those with SPMI, participants reported health problems such as high blood pressure, high cholesterol, diabetes, acid reflux, and sleep apnea. Further, many participants had been warned of the impending risks of heart attack or stroke by health providers due to excess weight and advancing age. At times, a family history of medical problems due to weight gain contributed to the possibility of participant’s own health problems and desire to make changes. For example, Gavin’s interest in weight loss began when his doctor informed him that his cholesterol was three times above normal and that he should have suffered a severe heart attack or stroke as a result. Additionally, Gavin has a family history of diabetes and is concerned about his potential for acquiring the condition: Yeah, I’m worried about the diabetes coming on with me. Every time I go see the doctor when he does my cholesterol level, he checks for my blood sugar all the time. So far it’s not come up positive. An uncle of mine, and a brother had diabetes, they was way overweight [sic] and I don’t want to be that. Gavin used his fear of experienced and impending medical problems to begin to create change in his life that would reduce his weight. This tension between the life that Gavin wanted for himself (e.g., one free of intimidating physical health problems) and the embodied experience of stress related to illness associated with excess weight drove his 95 desire for addressing his physical health. Furthermore, a notion of possible selves (e.g., what one is afraid to become, expects to become, or wants to become) is useful for considering this illness experience (Mattingly, 1998a) The above quotation is used as an exemplar, because although many participants experienced fear related to their health problems and stress about future physical consequences, most of them were as yet unable to make desired changes in their weight due to barriers present. Therefore, further analysis will be provided in the upcoming discussion on the interrelated theme of barriers and its subcategories. Stress related to appearance and impact on social life. Another issue promoting desire to change is stress related to body image due to being overweight or underweight. Many participants reported dissatisfaction with the way their bodies appeared to themselves and the way they imagined others perceived them. As Laura stated, “I feel ugly…it’s getting worse everyday. My clothes are too tight. So now it’s gotten so bad that I can’t stand to look at myself in the mirror anymore…I’m becoming real self-conscious about myself. I don’t feel attractive anymore.” During this same focus group, another participant, Kevin related his insecure feelings about being underweight to Laura, stating: She says she feels strange in particular about her weight and I feel the same way because I’m thin, so I’m just the opposite, you know? Like I need to have more [weight] on me per se. It just makes me feel insecure. It makes me feel insecure because everybody, pretty much everyone in my family are big people, like my brother…he’s a big old guy. And my sisters they’re pretty big…but I’m slender and I’m like man, what happened to me? The insecure feelings related to being underweight or not as muscular as desired, was only discussed by male participants, which may reflect an internalized gendered cultural 96 expectation about male and female bodies. The tension that exists between how one’s body should look or feel and how one actually appears creates oppressive feelings of dissatisfaction, insecurity, inferiority and low self-esteem. In extreme cases, a sense of “losing” oneself may emerge. For example, Carlos began rapidly losing weight after the death of his mother, who provided his primary emotional support. Carlos has trouble looking at himself in the mirror because it is a reminder of how much weight he has lost and his sense of embodied identity has been severely affected. Carlos states, “I feel like one of those [cartoon] characters on TV. I’m not trying to be funny, I’m serious. That I’m cracking up, that my body is cracking up. Even my face looks different each time I see myself in the mirror.” The importance of not being at a desired weight and the impact this has on self- esteem and identity cannot be understated for those with SPMI, who are already in the midst of battling embodied experiences of psychiatric illness and social hardships such as stigmatizing attitudes. The potential for symptom exacerbation during times of stress increases. For those with SPMI and weight problems, it can thus be hypothesized that the strain of dissatisfaction with one’s appearance may be even greater than that of the general population. Whether the participants were slightly underweight, somewhat overweight or very overweight, they frequently connected around feelings of inferiority as to how they experienced themselves in the past or how they desired to feel in the future. Unfortunately, many participants reported experiencing an increase in depressive feelings about their weight, which then contributed to additional weight gain or weight loss and further problems with symptom exacerbation and stress. For many participants, 97 this continuous and seemingly unstoppable cycle resulted in feelings of hopelessness and despair. In addition to feelings of inferiority, concerns around experiencing oneself as unattractive to a potential romantic partner were frequently addressed. The participants who were not romantically involved at the time of this study identified weight as a major barrier to the possibility of finding someone to begin a relationship with due to a lack of image-related confidence. As John stated: Like I’ll see younger guys who are fit, and I’ll see guys who obviously work out, and I feel envious. It makes me feel a little inferior, you know? So weight has been an issue for me in terms of my self-esteem, my self-image, and it bothers me. Contrarily, although John desires a relationship, he also has a fear of rejection. He believes he may be using his excess weight to protect him from relationships that might result in disenchantment: But I know that [being overweight] also keeps people away. By like staying overweight and by looking physically unattractive, it’s sort of like a wall that I’ve built up to myself. So it’s sort of like an unconscious way of keeping people away, like it makes people not want to come to me…It’s like you build a wall of protection around yourself so you won’t get hurt emotionally, you won’t get rejected…It’s a way of avoiding getting involved in relationships that could lead to emotional upset or disappointment. This conflict for John, the desire for closeness coupled with fear of rejection, is one important factor that he believes has kept him from addressing his weight issue. Particularly in this case, we can see how the stress related to appearance and psychological experience of illness coincides within the social context of which one is a part. Had a biomedical framing been used in this study, John’s experience (and that of other participants) would have been viewed in terms of what has gone wrong with the 98 body and how it can be “fixed.” A disability studies perspective illuminates the interrelatedness of the embodied experience of stress relative to appearance and social experiences, thereby complicating the dominant view of the person’s body as defective. A close examination of the passages in this section reveal that while participants may experience stress related to their weight issues, their experiences of self are often set against social norms and the dichotomous representations of normal versus abnormal bodies. While participants desire weight change in order to improve their self-image or decrease feelings of inferiority, considering the experiences of embodied oppression in relation to cultural representations of the “normal” body may provide an ability to reframe their views of self and alleviate some of the stress they experience. Frustration with engagement in everyday activities. A further source of discomfort for participants was the inability to do everyday activities such as walking, exercising and other leisure activities due to fatigue caused by excess weight and medication side effects. Sarah, a participant dually diagnosed with SPMI and substance dependence, became very frustrated during her recovery program when medication weight-gain side effects caused her weight to increase rapidly, to over 8 women’s dress sizes. Already an overweight woman prior to this additional weight gain, Sarah recalls the stress of this event and the need to confront her doctor about a medication change: Because of gaining a lot of weight, it was really hard to even implement exercise because I had a lot of fatigue and it caused me to be really lazy and things like that. I had problems with stress issues as far as how my weight looked…I literally screamed my head off [at the doctor]. Because it’s like, wait a minute, you have to find a medium for me because at first Trazadone wouldn’t work for me either. I couldn’t actually get to sleep and it would take 99 me longer and the Seroquel is the only thing that worked…I was getting borderline diabetic and I was having all these problems. And I kept telling him you got to find a medium. Sarah’s doctor adjusted her medication regimen and when the lethargy lifted, she found she was able to do 15 minutes of brisk walking. This started to decrease her weight, and with renewed energy she sought to make additional changes in her diet and activity levels. This period of stress and resulting health problems from weight gain caused Sarah to take action on her own behalf and advocate for changes to her medication before she could start actively exercising. Sarah’s frustration was also caused, in part, by the situation she experienced as a result of her physician’s biomedical approach to her health. While Sarah’s psychiatric symptoms diminished, she was left to deal with an exorbitant amount of weight gain, lethargy, and inability to perform daily activities at her previous level. Had Sarah not been cognizant of the cause of her weight gain or able to advocate for needed changes in medication, it is plausible that her weight would have continued to increase and her ability to engage in valued activities declined further. Fortunately, this was not the case for Sarah; however, several other participants expressed frustration and confusion about the cause of their weight gain and were not clear about how to address it with their healthcare provider. For example, another participant in the same focus group was shocked when Sarah related her weight gain as a result of Seroquel. As Sarah expressed her frustration and subsequent visit to the doctor, the other participant, Laura, began to make connections between her own medication regime and her weight gain. Laura reported 100 feeling lethargic as well. Upon reflection, Laura noted an increase in her appetite after beginning this medication. Empowered by the conversation and validation she received from Sarah’s experience, Laura later arranged a visit to her doctor to advocate for her own medication change. Another participant, Calvin has found that he is not able to engage in activities at his previous capacity and that his body is deteriorating with advancing age. He finds that he gets injured more easily and becomes ill more often with common colds or respiratory infections: The fact that I've been so stressed out I've started smoking and that's really done me, almost done me in. I've been getting sick on a regular basis and I think it's because of my lack of activity. And I was just looking for--I'm looking for some way to try to change the direction, you know. I'm getting older now so it seems like every time I get out there to exercise I wind up pulling something or straining something. I don't know, it's like the mind remembers how to do all these things but the body just is not there anymore. I played some softball a couple of weeks ago and I pulled a hamstring and I was like, "Oh my God," it just-- it was killing me. What do I do about this? And I think I was down-- usually I would have, back in my twenties I would have bounced back from that in no time. But I don't know, I just feel like my body is starting to deteriorate and I need to do something about it. Calvin’s inability to perform desired activities at his previous level is a driving force in his desire to manage his weight. In theorizing disability, Davis (2001) warns that able- bodiedness is only a temporary state and with age, disability theoretically becomes a factor in the life of any individual. The participants’ desire to continue to engage in everyday activities speaks to the value particular activities hold and the importance of an approach to health, wellness, and weight management that affords opportunities to participate in personally treasured activities despite limitations. 101 Barriers to Weight Management: Stigma, Survival, Services, and Support Desire to manage one’s weight is not enough when faced with constant barriers to success. In this section, I will identify obstacles to weight management as described by the participants. The topics of stigma, survival, services and support emerged as salient features of the barriers to weight management for the participants in this study. I have organized this theme into the following subcategories, which address the aforementioned topic areas in detail: (a) Weight-ism: Size discrimination and internalized views of self, (b) Navigating everyday needs: The survival struggle, (c) Weight management recommendations: One size fits none, and (d) Service changes: The absence of activity. Weight-ism: Size discrimination and internalized views of self. During the data generation and analysis portion of this study, it became evident that participants often made negative general assumptions about individuals who were overweight and perceived themselves in negative ways. When encountering other overweight individuals through the course of everyday living, participants acknowledged making judgments that people who were overweight were “lazy couch potatoes,” “lonely,” “depressed,” “lacking control,” or seemed like “they just don’t care anymore.” As John stated: Whenever I see an obese person, I automatically assume, and maybe I’m being unfair, but I think it’s probably a relatively accurate judgment to make that when I see an obese person, they’ve got something going on psychologically that they’re dealing with, or they’re having trouble dealing with. I don't know what it is, but it’s something. I don't know about their personal lifestyles, but I’d be willing to bet that they’re pretty sedentary. You know, they eat a lot, they sit in front of the TV probably. 102 Size discrimination is a broadly accepted form of prejudice in the United States and unfortunately it is on the rise. Andreyeva and colleagues (2008) found a 50% increase in size discrimination from 1996-2006. Those who are overweight are subject to lower workplace earnings, healthcare discrimination by physicians, and attitudinal barriers within familial relationships and friendships (Puhl, 2006). These are just a few of the difficulties that people who are overweight must contend with on a regular basis. Despite a political movement to reduce size discrimination, which dates back to the 1960s with groups such as the National Association to Advance Fat Acceptance (NAAFA), research indicates that even a relatively small amount of weight gain is associated with experiencing bias from societal others and that this has the potential to increase rather than decrease the obesity epidemic (Puhl et al., 2008). In an earlier chapter I suggested that people with SPMI and excess weight may experience a dual stigma based on the presence of both conditions. Furthermore, the negative views held by some participants about people who are overweight appeared to result in internalized judgments of the participants’ themselves. In addition to internalized judgments about oneself based on stigmatizing attitudes, participants also made cognitive generalizations about themselves based on past experiences. Many participants tended to identify themselves in dichotomous terms (e.g., having self-control v. lacking self-control) where eating and exercise were concerned; however, a closer examination revealed that the issue of self-control was rarely as black and white as the participants suggested. Often the compounding factors of socioeconomic and environmental barriers contributed to weight management problems to a much 103 greater degree than did the personal responsibility participants consistently placed on themselves. For example, Hakim referenced the reasons he believed people make unhealthy diet choices: It's cheaper to go get a pizza than to go get some good fruit or something good. You know, it's not affordable. So that's why they do it. Just like normally people eat pork by-products because it's cheaper, than to go buy, you know, turkey or something, or a beef product. They’d rather just go get the cheapest thing that they can go get. The struggle to meet basic needs on low incomes provides segue to the next theme, which addresses the participants’ struggles with daily survival and meeting basic needs. Navigating everyday needs: The survival struggle. All participants in this study were on fixed, low incomes. Meeting basic needs for food, clothing and shelter was a constant struggle for most of them. Although participants talked about issues of personal responsibility such as making poor dietary choices and being “lazy,” analysis from a disability studies perspective revealed that this explanation simply does not provide a clear picture of the everyday experiences of these individuals. Participants who identified themselves as lazy frequently discussed circumstances that contested this view. For example, participants received a monthly income from a governmental source and had to use those funds to meet all of their needs for the month. With an average income of approximately $800 per month, they are required to care for themselves and their environment. They use their funds to pay for rent, utilities, clothing, transportation, and food. These financial obligations, of course, do not take into consideration social and communication needs such as a telephone, television, or internet to remain connected to 104 family, friends and current events, which some participants recognize as essential to their everyday lives. As Calvin states: My priorities are to make it through the month, have food at the end of the month. And fruits and vegetables I love to have, but they don't last very long. Bread <snapping fingers> is gone like that. …I have to eat the stuff almost immediately or else it's molded, it will mold in a couple of days, so. And just trying to balance my budget with my bills, you know, phone service, internet service, you know, gas, power, you know, just having all those things, cable bill. It's like everything seems to be going up all the time and just keeping a level head. Now most of the stuff I use just to keep my head together…I need the cable because I really am kind of desperate to know what's going on. I need the internet because I need to be able to reach out and find out and I need that access, you know. It's mostly for entertainment but that's what I think mostly what we're here to [do]. I mean what we need to do in order just to keep an even keel…it keeps me out of my own head... Like Calvin, almost all of the participants have run out of money before the end of the month and some are forced to resort to other methods to meeting basic needs. Carlton attributes his dietary changes directly to his income, stating: But my diet changes when my money, you know, normally when I pay my rent at the beginning of the month, I’ll eat like, what I want. Towards the end of the month, when I get broke, I’m eating what I can eat. Sometimes by getting the food from the free places…. They give you soup, they give you canned goods…they don’t give you any meat….But the most important thing is having a balanced diet because it’s hard to focus if you’re hungry, you know? Like Carlton, some participants stand in line in the early morning hours at a food bank to get a “good number” in line, which will ensure that they have more than only canned and dry goods to eat. Others resort to trading food and cigarettes with neighbors during the hard periods of the month. Many resort to eating one meal a day and buying inexpensive convenient foods that will fill them up, such as hamburgers and other items featured on 105 the dollar menu at local fast food establishments or canned goods from the local $0.99 store. Grocery shopping creates many problems even when people do have access to funds. Issues such as lugging grocery bags on the bus pose an embarrassing inconvenience. Taking a cart from a local shopping plaza and pushing it home can create legal problems. Carrying grocery bags while walking home results in the need for repeated trips to the store. For many people, having the energy to fight these barriers to achieving relatively simple tasks even on an irregular basis would be daunting; however, day in and day out the participants in this study are faced with these issues and yet call themselves “lazy.” When analyzing these data from the focus groups, I questioned whether this “laziness” was a combination of weight-based and mental illness-based stigma internalized by participants. Through the course of participant observations and individual interviews, it became clear that an activity-related factor was also to blame. For example, a participant may self-identify as “lazy,” yet lack the knowledge and skills to perform a certain activity such as cooking. From a disability studies standpoint, a lack of resources and opportunity prevented acquisition of certain skills and contributed to the negative self-perception held by many of the participants. Another concern expressed by participants relative to finances is that their access to certain supports for weight management is limited by their socioeconomic status. Sarah sums up the frustration she has experienced by the current economic crisis, her limited access to resources, and the need for the mental health system to address the physical health needs of its consumers: 106 Our economy is really crap right now and MediCal has been cut in so many ways. I am limited on things that I can do as far as to help myself because I can’t go to get certain types of things medically that other people can get because I’m limited. I can’t ask for certain medications or certain things that can help me with my weight gain because I’m limited and income causes…even more stress because I begin to try. I try every avenue and I run into these blockers. And then I have to look at it, so I go to the people that I do have access to and I ask them, “Well can we have this, this, this, this, this?” And they [reply], “Well, we don’t have this. We don’t have that.” The groups that I am limited to don’t have access to these things. That’s why like I told you I was like, hooray, when they told us they got a weight management group coming up. And I was like, “Yeah, sign me up for that.” …I believe in mental health because of the psychotropic medications we take it should be a definite that there should be some type of weight [management program] because a lot of people have problems with the loss of weight and a lot of people have a problem with the gaining of weight. The happy middles are very few... The lives of these participants are encumbered by an endless process of attempting to meet basic needs, finding ways to self-advocate, coming up against obstacles, negotiating around the barriers when possible, and repeating the cycle. Because many of the participants lead stressful lives related to meeting basic needs with limited resources and managing symptoms of their mental illnesses, they frequently spoke about food as a comfort during times of stress. For example, Calvin theorized that use of food was a comforting response to difficult economic times, not just for himself, but for others as well: It's not just the lack of exercise, I think I've been really stressed out, you know? Maybe it's the times that we're in right now. I look around and, you know, I see everybody is pushing and struggling to make ends meet. I don't know. They say that weight gain is kind of like a survival mechanism in a way. People put on weight, you know, it's a feast or famine deal. So I don't know. It's not about vanity or anything for me. It's mostly about survival, trying to make rent and pay bills. It seems like everything's going up, except for the raises…and there's no money in the system anymore. So right now for me it's just been kind of like survival mode…. I mean that's how I'm feeling 107 right now. And, you know, and I guess with the stress that I am feeling, I take comfort in the food that I eat. Another participant, John, views food as a comforting resource to fill a void in his life when he is feeling anxious or rejected: And my diet isn’t as good as it should be. I do eat a lot of junk for convenience. It’s relatively inexpensive, it’s what you’d call comfort food. If I’m feeling depressed or if I’m feeling anxious about something or rejected by someone, eating food somehow is like a comfort a little bit. It’s like filling an emptiness inside me. But that’s kept me overweight too. Calvin’s belief in weight gain as a “survival mechanism” and John’s use of food to fill “an emptiness inside” provide examples of how participants attempt to make sense of their circumstances and deal with the constant pressures encountered in daily life. Weight management recommendations: One size fits none. Participants in this study identified multiple limitations in their care related to successfully managing their nutritional health and weight needs. In the mental health programs used by these participants, weight management was rarely addressed. For example, John indicated that although he is overweight, he has only received information about exercise from his psychiatrists as it relates to his mental health diagnosis. He has not received any support for weight management from a physical health standpoint. John states: I’ve never gotten any personal advice from a doctor regarding diet or food. But I know for my depression and my-- I also suffer from OCD, obsessive compulsive disorder, and anxiety disorder. And I have had psychiatrists urge me to exercise. They said that would make a big difference for my mental health. That’s the only kind of real medical feedback I’ve gotten as far as exercise. But no one’s every really discussed diet with me. 108 Further, when a mental health care professional addressed diet or exercise with a participant for mental health reasons, at times the general guidelines provided did not fit into the person’s lifestyle or health needs. For example, Kevin has high cholesterol and dermatological problems, which makes it risky to consume some of his favorite foods. When his case manager suggested that he deal with stress by eating a favorite food, Kevin found this recommendation to be counterproductive to his physical health stating: But see she was telling me, she gave me a list on 25 things to deal with stress, how to deal with stress, and…we was talking about eat [sic] your favorite food, like you’re having a bad day or whatever and then you might want to treat yourself and she was saying that could help boost you up. But then I had an issue with that…in my situation, I can’t really eat what I want to eat because of the issues that I have, the health issues I have, so therefore I just can’t indulge. If I take a scoop of ice cream, I might break out [with acne] and stuff. Kevin found that he had to make adjustments to the recommendation on his own to tailor it to meet his physical health needs and fortunately he was aware of his dietary restrictions. Additionally, Kevin has been losing weight rapidly and is currently underweight due to his lifestyle, which involves miles of walking per day to access services and lack of adequate caloric intake for his activity level. Although Kevin is knowledgeable about certain foods he must avoid, he is not informed about the need to balance energy expenditure with food intake. As a result, he continues to lose weight and feels “insecure” about his body image. Although both Kevin and John are motivated to address weight management in their lives, neither of them have had support to do so from a physical health perspective. As a result, they struggle with obtaining information and making desired changes in their bodies. This may be due in part to the fact that Kevin is underweight and John is not 109 severely obese; however, these situations provide exemplars of the ways that physical health can be overshadowed by a mental health diagnosis or overlooked by a mental health program. These types of general guidelines can provide a source frustration and confusion, when participants try to tailor healthcare provider’s recommendations without guidance and support. The need for individual tailoring of recommendations and healthcare provider consultation is essential to a healthy weight management program that addresses the particular needs of the person and provides realistic, attainable goals. In Sarah’s view, a workable weight management program focuses on changes that fit within a person’s life and does not demand overwhelming changes that cannot be maintained. She warns that a program that is “too extraordinary” will likely result in becoming overwhelmed and will only hinder progress: I think it goes on an individual basis because we all individually have our different worries and stresses about certain things. I think the best advice would be to make sure that you have someone that you can consult about your issues, whether it be a therapist, doctor, psychiatrist, or whatever and get a healthy medium for you, something that you can maintain, not something that is going to be extraordinary. Don’t let the doctors tell you, “Oh well you got to do this, this, this, this.” And it’s going to be too extraordinary because it will cause even more stress and then you’ll go overboard with eating or whatever. I have that issue where if there’s something too stressful and “Oh, I can’t do this. I can’t do this,” then it’s like out the door period. But it goes individually and you have to find something that you can accept and if you find something you can accept I think it will work out for you. Sarah feels strongly that lasting changes must be built into one’s daily life activities and must encompass a broad range of topics. John agrees and does not understand why the mental health program does not incorporate services that address these specific needs for people with SPMI: 110 I think in general, mental health workers should be given as much information as is available about what effects food and nutrition can have on an individual’s mental state. Again, I’m assuming there are studies, I’m assuming there’s information about this. But I think that people would ultimately benefit, people with mental problems would benefit if in fact their caseworkers, their therapists [e.g., psychologists], the people they see, had information to give about maybe certain ways of eating or certain types of food, or ways of preparing certain types of food that in fact could directly, or do directly affect one’s mental state. I think that would be a great component in any kind of mental health facility. In addition to not having weight management needs addressed by health professionals in a tailored fashion, other participants have experienced stigma from their providers, which may be due to their mental illness. Calvin speaks about experiencing stigmatizing attitudes from health professionals and the struggles he has endured to get needed help: Everyone's got hang-ups and deals that they have to deal with, so…maybe I shouldn't be so hard on doctors, you know? But I assume that because they're coming at me as a professional that they would behave as a professional. It's like, well…I've got my PhD on my “I love me” wall. [Doctors should] think of it this way, you know, you're in this with me. My whatever pays you your whatever. So we're in a kind of symbiotic relationship. You need me. I need you. So let's treat each other as if, you know, we need each other, you know….If I need you to feel wellness and you need me to get paid then maybe we should start respecting each other to a certain degree instead of looking at each other as, well, you know, I'm on top and you're on the bottom and, you know. That's why you sort of get the feelings from some professionals to the point where it was even hard for me to actually get the help that I actually needed. It's like, you're not hearing me. The need to have one’s voice heard and be respected is a source of frequent frustration for participants, and those who are not assertive have difficulty getting their needs met. Calvin prefers to use health professionals who show respect for him and is reluctant at times to reveal his mental illness for fear of not being taken seriously. Another 111 participant, Susan, actually had a physician tell her that he was at his “rope’s end” with the physical condition Susan was seeking treatment for (e.g., a recurrent bladder problem and weight gain). Although Susan stifled her response to the physician she commented during the focus group that she wanted to say, "You're at your rope's end?…I feel like I don't even have a life anymore, you know?” These types of responses from medical professionals prevent people from seeking needed help and contribute to a lack of trust in providers who could potentially provide support. Participants especially expressed difficulties with healthcare professionals in the community near the mental health program they attend. Since the providers in this area are aware of the mental health facilities nearby, they are also aware that some of their patients may be members of the local community mental health program. As a result, the participants complain that their physical health needs are not taken seriously. Susan reports: Like this doctor across the street here…I mean, he won't take me seriously at all. Like I was having like a female problem and I was like, you know, I told him where it was. And he seemed really pissed off because he couldn't find anything. And he was like, "Okay, just get dressed now." And I thought, "You know," I'm like, "If I'm in pain and you're telling me that I'm not in pain," how does he know that I'm not in pain? I mean and then automatically when I first saw him and I don't know who told him this or he just must have assumed, he's all, "Are you from [the mental health program across the street]?" Given the difficulties participants have with getting physical health support due to stigmatizing attitudes, limited resources, and lack of information, it appears that the mental health program needs to provide a venue for addressing health and wellness on a 112 broader scope. Unfortunately, supportive services for mental and physical health issues are often divided, leaving participants in a situation of not having their needs fully met. Two participants in this study who are overweight have been successfully addressing weight management issues and have been able to lose an average of 15 pounds over the course of the past two years. Both of these participants have sought support from their primary care physicians in order to obtain general recommendations due to experienced health consequences from weight gain. Although general recommendations were provided in each case and they have been losing weight, both remain overweight and their health concerns have not resolved. Their approach to managing their weight has largely been a result of their own tenacity in seeking recommendations and implementing them. Both participants identify the healthcare provider as a resource for monitoring health problems; however, the development of their approach to weight management is largely a result of their own research and understanding or misunderstanding concerning methods to reduce weight. For example, Gavin credits his weight loss with eating only one meal each day. He says he had to put himself “on a timer” because he “realized” that he couldn’t eat more than once each day if he wanted to lose weight and avoid cardiac problems. Although Gavin’s cholesterol is lower, eating once a day is likely hindering his weight loss and not giving him essential nutrients to remain as healthy as possible. Gavin does not exercise and says he does not know how to fit it into his life. Sarah, a particularly assertive woman, has sought recommendations that fit into her lifestyle and has reportedly been very vocal with her physician about her needs. 113 Although she remains obese, she appears to have a greater understanding about the need to eat frequently, substitute cooking ingredients, consume healthy snacks, and build exercise into other activities that she enjoys. Sarah has found a doctor who works with her on meeting her goals, but wishes for support to make additional lifestyle changes. Obtaining recommendations from a qualified healthcare provider appears to be an essential factor in addressing weight management; however, advocacy skills are essential in order for these participants to get their needs met. An understanding of the individual factors in a person’s life makes tailoring recommendations possible. Lastly, each of these participants identify that further support is needed in order for them to be successful. Specifically, they expect that routine support at their community clubhouse is needed and are disappointed that there are not opportunities for learning skills that would better their everyday lives. Service changes: The absence of activity. It is well-established that social connections are essential for those with SPMI and the participants in this study echo this sentiment. Having someone to do something with was identified as in important part of being successful and leading a quality life. Participants in this study were vocal about the need for activity opportunities in the clubhouse and some of the participants who had been involved in this program in past years lamented the removal of particular resources (e.g., exercise programs, exercise equipment, cooking classes, etc.). Due to changes in funding and the agency provider, a shift from promoting activity engagement toward delivering medically necessary services occurred in the program. In each of the focus groups, participants who have been long- 114 term members of the clubhouse reported noticeable differences in the quality of the program’s activities over the past several years. While the clubhouse setting provides a free and accessible place for connecting with other members of the community, many participants reported that it is poorly attended in comparison to previous years and some expressed frustration with the current services and lack of available activity. For example, Gavin stated: The only reason why I come up here and participate with my therapist and my service coordinator is because I need to see a doctor to get my medication. If I could see the doctor without seeing my therapist or service coordinator, then I wouldn’t see him. I wouldn’t come up here. I’d just go see my doctor and get my medication and go home because of the kind of services that they have. Social relationships and opportunities for group activity not only cushion some of the loneliness and isolation in the participant’s daily lives, but also serve to combat boredom, monotony, and engagement in unhealthy activity. Kevin, spoke to the importance of activity in the subsidized housing complex in which he resides. In his life and the lives of his friends who have a history of substance abuse, regular healthy activities and opportunities for social connection provide a buffer against future substance abuse that can contribute to health and weight management problems: Socially [activity is] good for you, going back to developing a character, because I stay in a dual diagnosis building and we’re supposed to have a lot of activities too, like Pilates classes, yoga classes. We got a community meeting and we’re supposed to have other activities, outings, maybe a domino night, this type of activity, dual diagnosis meetings and stuff. And a lot of it has not been active because of the Case Manager or this and that and the other. A lot of people are getting bored and frustrated because they’re not participating in any activity and they find themselves going back to the old [drug use] behavior and stuff. Like I said, we’re supposed to do a lot of activities. We used to do a lot of activities. They’ll go back to they old self, like using and 115 stuff, because they would get so bored and frustrated because we wouldn’t have no activities. The change in services and lack of focus on activity has resulted in poor attendance from the participants’ perspective. In turn, this alteration limits their opportunities to establish relationships and share resource information. Some members were just meeting each other for the first time in the focus group they attended. The participants’ desire to establish relationships was frequently discussed during the focus groups. Some participants even demonstrated this need by exchanging phone numbers or making a plan to meet with another participant after the group concluded. As Calvin told another focus group member who was having trouble accessing services in the community: I have a friend, a female, and she's got the whole area wired. Develop a relationship with one of the members. You want anything out of this program. You want anything out of the system. Talk to another member. I mean staff is cool; staff will help you hook into the system formally. But if you really want to know how to survive here, talk to one of the members who's been here for a long time and you will get everything that you [need]. Because they've usually been here for some time can hook you into the system. Unfortunately, with attendance dwindling and fewer members connecting with one another as a result, the opportunities for resource sharing and relationship development suffer as well. In addition to the elimination of certain activities entirely (e.g., cooking classes, billiard tournaments, exercising with available equipment), which participants believed reduced attendance and opportunities for engagement, another barrier to participation occurred simultaneously. The scheduled timing of group activities that remained (e.g., 116 walking group) was not convenient for many of the members and this also contributed to diminished attendance. In Gavin’s words: They used to have an exercise group on Friday morning at nine o'clock, and there was like one or two people that would come for the thing. We'd just would walk one or two or three blocks around this neighborhood and come back and that was the exercise group. But now we haven’t had it for the last seven, eight months now. The teacher, she can’t find enough people to come up here, because you’re not going to find members being up here at nine o’clock in the morning. They’re going to be at home sleeping because they’re not morning people. Additionally, participants noted that providing novel experiences and a variety of activities was essential to member attendance and participation. According to one participant, providing new and different activities has been a problem for the program due to limited funds and the need to find free community events: Now Saturday if we can find enough people to go out to do some activities around in the city or like that, like go to the beach or to a park and like that, we'll go. But if there’s only one person on a Saturday that’s up here well then we’re not going. We’re not going anywhere. I haven’t been coming up here on Saturday the last month because the activities or the places that we’re going I’ve already been to so many times I already know it by heart. I’ve been to all the beaches, to the parks, stuff like that. I want something new that I haven’t been to so I’ve been trying to put my input in with my Service Coordinator about the things that I haven’t been to, the different museums I’ve never seen, and the museums only offer free admission on every Tuesday of the month, the first Tuesday of every month. So trying to work those museums in so we don’t have to pay for admission is kind of hard because all the other days you have to pay for admission. With us going to the museums, walking around, going to the parks, going to the beaches that’s good exercise for us and like that, to help us maintain our weight control. Although a member council meeting takes place at the clubhouse and various subsidized housing communities also have meetings where residents are able to provide input, the participants in this study report that these types of meetings are poorly attended. They would like to have input on the activities available and the ways that 117 funds are used, but member involvement has continued to dwindle in recent years as a result of changes in services from the participant perspective: We have a member council every Wednesday. And I've been coming to [to the clubhouse] for over 10 years but we used to have a lot more members come up here just a few years ago but now they’ve just sort of gone away. They used to come here early in the morning, eat lunch or dinner, and stay after lunch or dinner and mingle with each other. But now they just come whenever lunch or dinner is here. They eat and then they take off. Because I’ve told my therapist… it’s the kind of services that you provide and the quality of service that you provide that’s what brings the members back and back again. But you've been slacking off since then, the last few years. As a result of this shift in membership attendance, which these participants attribute to a lack of activities and services, a situation has been created where “our voice isn’t being heard.” According to Sarah, the topic of healthy weight management should be a programmatic concern for all people with SPMI due to the potential for weight problems and the lack of attention to these issues in the mental health field, stating: We need the whole spectrum. We need to know how health conscious we can be [about our weight], how we can be nutritionally healthy, how we can learn about exercise and stuff like that, how it goes in with our medication, everything...Why do you think we’re all here? …That’s the thing I’m trying to get you to understand. It’s like exercise is not always the first option for people with mental illness, because a lot of our medications causes us to be like oh, lazy. So exercise will not be the option but if they had some kind of information and groups, just like we’re doing right now, sitting down and discussing these things, maybe feeding off each other, showing us some healthy, nutritional health as well as some exercise all combined…I don’t know but I think that’s what we need. It’s not necessarily just one particular thing. We need the whole round circle. Although participants in this study desire the ability to connect with one another and have informational sessions and groups that support connections around healthy activity, there appears to be a division amongst program participants according to different diagnostic groups needs and particular life circumstances. For example, Calvin states: 118 This program, I know it has flaws but what's happened, I don't know, it survives basically through just sheer will I believe, you know. It's been here so long that it's just a landmark and people know it for what it is. So-- and besides, it has so many different facets, it has drug and alcohol, it has the youth thing, it has the people who are coming-- who are cycling from the prison system back into society. But all with, you know, dealing with mental health and things that like, so. But everybody has their own, you know, thing. So, you know, or their own set of, you know, what's the word for it? Their own connections. You know, it's like there's the youth connection and they kind of click together and then you've got the drug and alcohol and they click together. And we don't necessarily mix. So I'm-- you know, I guess I am a little discouraged about that. Attention to activity and making social connections through mutual interests outside of diagnostic groups seems to be diminished when the attention is placed on mental illness, similar circumstances, or age. Attending to activity, while once was popular in this milieu, has been replaced by a focus on mutual conditions, thereby limiting the potential for social interaction and engagement in activity. Reduced activity participation, in turn, contributes to poor weight management. Conclusion Although weight management issues for people with SPMI are both numerous and interrelated, careful analysis of the data resulted in factors affecting both a desire for weight change and barriers to effect such change. The theme of embodied encumbrance includes such categories as the fear of health problems real or projected, stress and discomfort around body image and its related effect on social life, and the frustration experienced when unable to engage in activity at one’s previous capacity. While the barriers to weight management are complicated and diffuse, the four broad categories of stigma, survival, support and services emerged as salient considerations for these participants. To further explore the diversity and complexity of weight management 119 issues in the lives of people with SPMI, I now turn to an analysis of personal stories to illuminate the maxim: one size fits none. 120 Chapter 5: Personal Stories In Chapter 4, I provided an overview of the themes that emerged through the data generation and analytic coding process during the course of this study. The previous chapter’s purpose was to focus on the breadth of information provided by multiple participants and formulate ideas about factors affecting desire for weight change and the barriers to successful weight management. In this chapter, I tell the stories of four participants to provide a more nuanced view of the everyday lives of these individuals and their particular struggles with weight management. Each participant’s story was constructed according to the salient features that arose during the course of focus groups, individual interviews and activity visits. At the close of each participant’s story, the prominent points of each will be summarized. A synopsis of what was learned through this analysis concludes this chapter. Laura’s Story: “I’m a responsible citizen now” Laura has been struggling with excess weight for the past two years since recovering from a heroine and crack cocaine addiction. She largely attributes her weight gain to a prescribed psychiatric medication (e.g., Seroquel) and also defines herself as “lazy” at times. She is in her mid-fifties and is diagnosed with depression and post- traumatic stress disorder. Laura was in a relationship for over 20 years with the man who fathered her two children. During this time, their relationship revolved around drug and alcohol use. Laura endured frequent episodes of domestic violence. She was incarcerated numerous times for her drug use and attended more than 10 rehabilitation programs to recover from drugs 121 and alcohol. Although she desired recovery from her drug and alcohol use, none of the rehabilitation programs had lasting effects. As soon as she returned home to live with her partner in her old neighborhood, her substance use resumed and she found herself mired in the drug culture to which she was accustomed. At times, Laura would leave home to escape the violent encounters with her partner only to find herself homeless and subjected to other types of violence. She developed “street smarts” in order to get her needs met for shelter and food. She panhandled daily in various locations she deemed most profitable and would use the money to purchase food and drugs. While living on the streets, Laura became proficient at obtaining money and drugs. As a result, she was often approached by others in the homeless community and had to fight to maintain her personal boundaries: I worked hard for my money. I was a panhandler, but I worked hard, and I worked every day, and I worked solo; I was by myself. But they knew, as soon as they saw me come off the bus, they knew I was going to have money, I was going to have cigarettes, I was going to have dope. I might have liquor, and I’m going to have all the paraphernalia that I need to do it with. So here they come. “Laura, let me use your pipe.” “Nope.” “Laura, let me get a drink.” “Nope. You know, I worked hard for this. You’re not going to keep sponging off of me. Go get it yourself.” And I got tired, really got tired of that sharing stuff with them. Especially crack smokers. They’re just real greedy. …All the guys want to do is take a hit, and want to start kissing on you. Oh god. That’s the last thing in the world I want. “Get away from me. Don’t touch me.”…so I really became really on my own, solo. I wasn’t around anybody because I didn’t want to be bothered and I was in Compton by myself. A white girl right down on the streets of Compton. But I made it, because I was considered part of the hood. Everybody knew me. This was a terribly difficult time for Laura, as she was constantly subjected to sexual propositions from the males in the area. This triggered memories of sexual abuse and 122 coupled with the domestic violence in her past, led to an even stronger desire to numb her pain with drugs. She developed a network of other people who were homeless (and often using drugs) and they would canvass the neighborhood for abandoned houses or sheltered areas for the night. Although she could usually find shelter, she states, “my biggest problem was finding an establishment that would let me use their restroom - as a female that was my biggest problem everyday.” Laura became tired from life on the streets and believed there was no hope for a life of sobriety, as evidenced by the following statement, “I really thought I was going to live and die a hopeless addict.” During Laura’s last incarceration for drug use, she was approached about attending a substance abuse recovery program for women who had been domestically abused. Laura agreed to program admission, but did not believe that living in this facility would result in different outcomes from her previous rehabilitation attempts. She was pleasantly surprised. This program was designed specifically for survivors of domestic violence and was deemed a “safehouse.” As such, the program housed only women and those in the program were under strict regulations not to give out the address or any contact information. The program housed both women and children and Laura respected the rights of her peers to maintain privacy and safety. The best thing about the program in Laura’s opinion was the personal attention that she and other women received due to the small number of program participants and the fact that the program supported her in saving money and learning successful living skills: 123 We got a lot of attention. We got a lot of personal attention. I think the quality of the counselors really makes a difference. Because [at] most of these rehabs, it’s just money, money, money, money. “You don’t want to do this program? Get out, get out! We’ve got somebody else who can take your bed. We don’t care if you get clean or not. We just-- we want your money.” The biggest thing that [this rehabilitation program] did differently, that made it possible for me to be here, is that they have a system where they take half of your income, and they make you put it in savings. So every SSI check I got, half of it had to go into savings. And then you pay them 10 percent for rent…. I was paying…ten percent for rent and the rest for food…but after six months, I had accumulated 1500 dollars. That made it possible for me to get my own place. This is the first time that I now had the means of doing it on my own. Every other time, I left rehab, and I had to go back to the same environment. I had to go back to the same place, because I had no choice. Where else was I going to go? Laura graduated from the program after six months, relapsed, and quickly realized her need to return. Fortunately, she was allowed readmission and she remained there for another six months, stating, “It’s what I needed. I needed more time.” Another unique feature of this program that Laura credits with her successful recovery is that they had a support person designated to help each woman find subsidized housing. Laura currently resides in her own studio apartment and for 2! years has been clean and sober. Obtaining psychiatric stability results in a weight problem. Before becoming sober, Laura rarely struggled with excess weight. For her, drug use took priority over eating and obtaining drugs required a very active lifestyle. Upon becoming clean and sober, Laura began treatment for her mental health issues through counseling and psychiatric medication. As previously mentioned, Laura attributes the majority of her weight gain to side effects of the medication Seroquel. Although the medication helped her to sleep, each time she awoke in the night she would be ravenous 124 and would be compelled to eat whatever snack food was available in her apartment (e.g., cookies, snack cakes, potato chips). Laura gained 40 pounds and became very uncomfortable with her appearance. Recently, Laura contacted her doctor and requested to be switched to a different medication that she hopes will help decrease her overeating. She has a well-established relationship with her doctor, stating, “He likes me very much because he sees me as a motivated person.” Laura is a strong self-advocate and believes that “nobody knows better than the patient about what’s going on with them.” She continues to have difficulty finding an alternative medication to the Seroquel, but is determined to try different options until she finds the right one. Based on past experiences, Laura will work with psychiatrists to find the right dose of other medications: A lot of people, doctors are concerned about the fact that I take the highest dosage of Wellbutrin that you can take, which is the antidepressant. And I say, “Do you know how long it took for me to finally get to that highest dosage?” Because I kept going back to the doctor saying, “This is not working. I’m still depressed. This isn’t doing anything for me.” So the doctor would say, “Okay, well, we’ll raise it a little more.” And that went on and on and on. Then she finally said, “Well, all right Laura. I’m going to give you the maximum amount that you can get with this.” In fact, they have to do it in two bottles. And she said, “We’ll try that. If that doesn’t work, we’ll have to try something else.” So once I got the maximum and started taking the maximum amount, within a week, I said, “This is it. This is what I have been waiting for.” That was the solution. That was what I needed. Laura believes that the process of finding the right type and amount of medication needs to be negotiated with the physician and she views herself as an active participant in this process. 125 Hidden barriers to weight management. While Laura attributes her weight gain largely to her medication side effects, there are many socioeconomic, environmental, and personal barriers to reducing her weight. Laura speaks freely about her financial struggles and is in the process of obtaining employment. She currently subsists on government funding and states that by the end of the first week each month “I was broke …[between] the bills and the rent and the gas and the car insurance and the phone, you know?…. After paying all my bills and everything, from just my SSI checks, I was broke by the seventh.” The money she has been living on barely covers those expenses and she continues to panhandle at the local gas station for food money. Laura has a neighbor who notices when she isn’t eating and he will bring over whatever supplies he can spare, although she knows that he too is struggling to make ends meet. Laura also borrows money from her children, now in college, and she struggles with feeling uncomfortable about this: As a matter of fact, often during-- like the third or fourth week of the month, I’m actually-- I’m calling up my kids and they’re loaning me money. And then I’m paying them back on the first. So that’s another thing. On the first, I’m paying back debts all over the place. That’s an uncomfortable position to be in too. And I even told my daughter that. And you know, she’s real-- she’s real proud of me, of my change in lifestyle. So she’s not reluctant to loan me the money these days because she knows I’m going to pay her back, but I said, “But Kylie, it’s not supposed to be like this. I’m not supposed to be asking my daughter to help me financially. It’s supposed to be the other way around.” Laura is only able to cook a few things so she frequently eats fast food or food that is easy to prepare such as hot dogs, bread, and bologna. One reason for this is that she would rather ration her food money and have something left over for other activities she values: 126 To tell you the truth, I’m not really interested in going to restaurants. I’m happy going to Burger King, and then saving the extra money to go shoot some pool or go see a movie. Spending 50 dollars at a restaurant to me is like a waste of money. It’s not worth it to me. So I’m real happy with fast food. And Denny’s. Especially Denny’s the Grand Slam [breakfast] because I can get two orders of the pancakes with the over-easy fried eggs. They say you can get four items for one price so I would order two orders of that. I would eat one there, and then take the other one home so I could eat it later for dinner. And it’s only like five dollars and something. During further discussion with Laura, a deeper reason for her approach toward eating emerged. While Laura appears to approach food primarily in terms of survival and meeting a basic need, the meaning of cooking and kitchen work to her must not be overlooked. For Laura, the “women’s work” of cooking conjures uncomfortable images of which she wants no part: Uh-uh. I don’t know [how to cook], and I never wanted to be taught, and I don’t want to learn how to cook. Even being in the kitchen is very uncomfortable for me. To me, cooking is like-- it used to appall me to see a woman spending hours, all day in a hot kitchen, making wonderful, wonderful things for her family or for whatever. And the table looks so nice, and it all looks so nice on the plate. Gone in 10 minutes. And nobody says, “Wow, thank you. That was really good.” “Well, that was good. That was a good meal.” And then you’ve got to clean up. And I said, “Oh my God! What satisfaction do you get out of that?” But a lot of women do. Oh, heck, no…what a waste! Laura is reflective and thoughtful about the reasons for her aversion to cooking. She has a personal theory on why this bothers her and it is rooted in historical experiences and her sociopolitical views about “rules of society” and gender equality: My mother was a stay at home house mother. I saw her every day put on these nice knit, you know, I don't know what you call them, knit pants, polyester knit pants and a nice little sweater. She even had a little scarf around her neck and she spent all day long cleaning the house, preparing the meals, never saw her chitchatting on the phone. She didn't even chitchat with friends. It was always doing something for the community, for the church. I grew up and 127 looked at my mother's role in life and I said, "Oh, my god, I don't want to grow up and be like that. Is that what happens when we grow up? That's what my life is going to be?" I was so scared. I said, "Oh, no." It looked so boring. How boring. I said, "I am not going to be like my mother." So I made sure I wasn't. I totally went berserk with that one. And the men are the ones who did that. The men are the ones who have control. They're the ones who give the women their roles in life, you know? …That's your job to cook me my meal whenever I want it and whatever I want and it better be on the table at 5:00. And I'll have sex with you whenever I want. And, no, you're not going to go to work, you're going to stay home. I don't want you out there, I don't want you working so you can meet other people. Yeah. There's a lot of things about how we're brought up as little girls and what roles we're supposed to play in life, you know? The rich detail that this passage provides demonstrates the complexity of cooking and kitchen work in Laura’s experience. For her, cooking is a symbol of oppression and to engage in this activity it is to willingly subject herself to it. Without such an understanding, assumptions about Laura’s cooking ability or lack thereof threaten to dominate an outsider’s view and undermine the intricacies involved in supporting her weight management goals. Summary. Laura’s weight gain is largely attributed to side effects of one of her psychiatric medications and she hopes that the medication adjustment alone will allow her to return to her desired weight. Based on her lifestyle and circumstances, it is unlikely that a medication adjustment alone will be adequate to resolve her issue with excess weight. In Laura’s story there is a complex interaction between the desire to manage her weight, her lack of financial resources, the activities that she finds meaningful and her life history. Based on her personal ideology concerning women’s traditional activities and their relationship to power and gender-based oppression, she does not value cooking and 128 has no desire to participate in this activity. Further, her financial limitations result in a need to choose between valued activities (e.g., playing billiards, seeing a movie) and the basic need for food. As a result, she eats unhealthy meals at home or in inexpensive establishments within the community. She would welcome support to make lifestyle changes and manage her overall health and well-being. Gavin’s Story: “I don’t know how to do my weight control” Gavin, who is in his mid-50s, has been struggling with excess weight for the past several years. He has been a consumer of public mental health services for many years and for most his life has been an extremely active person. In the past, Gavin held two jobs (e.g., raising chickens, delivery position) requiring daily physical exertion. His employment was terminated in the mid-1990s when he began experiencing symptoms of serious mental illness and was involved in an alleged fraud charge. This resulted in his incarceration at a correctional institution and subsequently the loss of his small farming business and assets. Upon his release, Gavin spent a period of time living on the streets. After approximately one year, he was able to make living arrangements and remained housed until the late 1990s. In 1999, Gavin again found himself in legal trouble and this time his incarceration resulted in an immense amount of weight gain: And the second time that I was locked up is 'cause I lost my SSI 'cause they found out I had over $2,000 worth of savings bonds. And you can't have more than $2,000 in any kind of property or cash or savings bonds or stocks and so I lost my SSI. So my [parole officer] told me, instead of putting me-- going on skid row and being homeless again, she went to the judge and had the judge sign an order to have me back-- locked up again so until I could get some kind of financial aid or like that, so I can go to a board and care. So the judge signed an order to keep me locked up 'cause he didn't want me back 129 homeless [sic], 'cause he knew my case from, you know…before. So that's when I shot up to 245 pounds the second time. Because the first year I was locked up I was working…making children's puzzles so I was active all the time, five days a week, so. But the second time I was locked up I was just sitting at the correctional center doing nothing. While at the correctional institution the second time, no structured activity was provided. Although there was a weight room available, he was unable to lift weights due to a prior back injury and he was relegated to spending most of his free time watching television or playing billiards. He ate three meals a day, which was uncommon for him, and the food in the facility was mostly fried. As a result of his increased caloric intake and sedentary lifestyle, he gained 75 pounds over the course of 18 months. Shifting circumstances and fluctuating progress. When Gavin was released from the correctional institution the second time, he went to live in a board and care facility that provided healthy meals. He also joined a full- time work program requiring intense physical labor. Consequently, he was able to lose the weight he had gained over the course of the next five years. Eventually the work became too strenuous and began to aggravate his back pain; therefore, he was no longer able to work. Also, he transitioned from one board and care facility into another where the meals provided were less healthy. These circumstances resulted in another bout of weight gain, although not as severe as the previous one. Currently, Gavin is approximately 30 pounds overweight and he estimates that he has been able to reduce his weight by 15 pounds over the past two years. He has accomplished this by eating less and eliminating certain foods at the advice of his physician. Gavin has lived independently in a subsidized studio apartment for the past 130 year and volunteers approximately 30 hours per week in a homeless shelter program. He is diligent and organized in his work and is responsible for managing a portion of the program under the supervision of another staff member. He also attends a community- based mental health program on a regular basis. As previously mentioned, Gavin has had some success at losing weight over the past few years; however, he remains concerned about his excess weight and the health ramifications of it. He is currently taking medication for high cholesterol and is quite concerned about developing diabetes due to a family history of the condition and his current weight problem. Gavin is not prescribed psychiatric medications that have known weight gain side effects; thus, his excess weight is largely attributed to diet and lack of exercise. Needing information despite a disciplined approach to daily life. Gavin believes his success with weight loss over the past two years has to do with “getting mentally strong” concerning his need to lose weight. He reports having set a personal limit to drink only one can of soda each day and eat only one meal which is provided at the mental health program he attends. As a treat, he allows himself to eat dinner once a week at a fast food restaurant. He is concerned because the food at the mental health program is “all fried food.” Recently, his physician noted that Gavin is beginning to gain weight again and that his triglycerides are high and not well-managed by the medication. Gavin is concerned about his weight because his doctor said “I should have suffered a severe heart attack or stroke by now.” Gavin has noticed a recent increase in his appetite and finds himself going back 131 for a second plate of food at lunch. He says he tries to follow his physician’s recommendations of eliminating “sandwiches, rice and pasta.” He cannot understand how he continues to gain weight when this is coupled with eating infrequently. His confusion is evident in the following: I gained four pounds. I don't know where. And the doctor says it's what you're eating. You know, I have to cut back on what I eat. But if I don't eat here, I go home and fix me a submarine sandwich or fix me rice or noodles, and then that's going to make you gain weight. And I don't understand how rice can make you gain weight. I don't understand that. Without any support other than from his physician’s comments during routine cholesterol check-ups, Gavin remains unsure of how to help himself and simply continues to try to piece together the information and fit it into his lifestyle: I don’t snack, no. If I get thirsty, I'll get me a can of soda, buy me a can of soda, but that's it. And regular soda will fill you up because of all the sugar that they have in it. So, I don't know how to do my weight control…they just started a group right here with a nurse, healthy living group, all like that. And my therapist says that I should eat more vegetables, and I'm not someone that eats a lot of vegetables and fruits. The only fruits I'm going to eat is either orange or banana, and vegetables are, like I said, the only time I eat vegetables is if I'm starving. Gavin has been eating less and less often rather than incorporating healthy alternatives into his diet. This is a result of recommendations that are not tailored to Gavin’s particular needs. While Gavin says he is physically active during the day, he leads a sedentary life after completing his work shift. He feels tired in the evenings due to the demands of his position: So, but soon as I leave here, I go home and I watch TV, watch the news. And I take my night medication at 6 o'clock, so I take my sleep medication around 132 three hours before it'll work to put me to sleep. And so I don't sit up at night watching these TV shows, all like that. I just watch the news during the week, and on weekends I watch, say either basketball or football on the weekend. Because since I leave here, I'm so dead tired…I want to just rest and relax. Gavin gets most of his food for home from local food banks, which he visits weekly. A problem ensues if Gavin does not arrive early enough to receive a ticket that enables him to obtain a portion of meat. If he arrives late to the food bank, he is only eligible for canned foods and dry goods; therefore, Gavin often arrives 90 minutes early to take his place in line. Further, Gavin has trouble preparing some of the items for which he is eligible due to lack of familiarity or the cumbersome nature of preparation: They give you canned vegetables or foods, canned foods. They'll give you rice and beans. And if you get a low number, real low number, like that, where you're first in line, you can get a package of meat, or like that, packaged meat. So, and but not with packs of beans, I usually give that out, because I never knew how to cook beans and they just told me that it takes about an hour, hour and a half to cook, you know, like that, and you have to keep stirring it so the beans don't burn the bottom of the pot. And I said, I'm not going to keep running in and out of the kitchen, stirring the water or standing right above the pot for an hour, an hour and a half…. It only takes fifteen minutes to cook rice or…noodles or pasta. A Thanksgiving turkey he received from the food bank inspired Gavin to use his oven. He asked a friend for instructions on how to prepare the turkey and planned to make himself a special dinner. Although he had been in his apartment for a year, he was not familiar enough with the oven to use it. Consequently, he believed the oven was not functioning properly and, unable to cook his holiday meal, contacted the apartment manager to arrange to have it fixed. The following week when the maintenance worker arrived to repair the oven, Gavin was informed that the oven was not malfunctioning. Rather, Gavin did not know how to turn it on: 133 And I had told the manager I didn't know, the oven stopped working, so he needed to have a technician to come check it out. So a technician came this Monday, checked out and it's all fixed, the manager said. But with the oven that I have, you just can't turn the dial. You have to push it in and then turn it. Well, I didn't know that. Because when you turn it, it's an electric-- you can hear a striker striking all like that. So, a pilot light lights on the oven, but the oven burner wouldn't light. So I couldn't bake nothing. The situation that emerged over the Thanksgiving holiday shows that Gavin takes action when an activity is particularly important to him. His ability to seek resolution to problems and learn skills with support is evident. Gavin has a disciplined approach to his monthly finances and plans meticulously to make his money last until the end of the month. Although he only receives $845 per month, he is resourceful and able to articulate his plan in great detail: And it's rough for people that are on SSI, because with the State having such a bad budget deal right now, going through a budget crisis, they keep on deducting money from people that are on SSI. Since May, I've lost 146 dollars from my check, so I had to redo my budget every time that they take more money out of my check. So I've got so much money I can spend on certain things, entertainment, all like that, but I don't go to-- gosh, I don't remember the last time I went to a movie…I usually to come out to my last dollar on the last day of the month. Usually I don't have the money to get either buy bus tokens or take the bus to the post office where my check goes. I have a P.O. Box there. So I usually, on the first of the month, I usually have to walk to the post office and walk back to check casher's so I can cash my check. And that's like a while from my apartment. My bus pass costs me 14 dollars. It costs me 13! dollars to cash my check, but…either January or February I’m going to open up a savings account at the U.S. Bank right here because I'll be saving that check cashing fee that they charge me…. Plus, I talked to the guy here that has a checking account there, and you can open up a savings or checking account for 25 dollars and there's no limit on the balance that you can have inside your checking or savings account. You can have one dollar as a balance, and they won't charge you a fee. There's no monthly fee at all they charge you. So, and then, since I spend 20 dollars here for a meal…for 20 days eating here. So, I might spend maybe 40 or 50 dollars on lunchmeat and rolls to make me submarine sandwiches at home. And since I'm going to food banks, I don't have to buy no canned food or rice or pasta because I get all that at the food banks. And so, the only thing else I spend is, like, on soda. Like, 134 since I drink one soda a day at home, so, but now I'm not buying name-brand soda, I'm buying Shasta soda, which is an off brand, I can buy a 12-pack for 3 dollars. So that'll last me for 12 days of, like, and I can buy three 12-packs, and that'll last me for the whole month, and plus another week for the next month. My utilities are all paid for. My rent's $241, my rent just went down a dollar starting this month. Gavin demonstrates tenacity in his ability to reformulate plans when obstacles arise. When he learns of opportunities for growth, he quickly incorporates new information and adapts his approach to managing his daily life. Summary. Gavin’s problem with excess weight emerged when he was remanded to a correctional institution to keep him from becoming homeless when his SSI was revoked. The plan made by his parole officer and the judge to protect him from living on “skid row” resulted in an immense amount of weight gain and ultimately created physical health problems. Gavin was able to lose the weight he gained upon his release through strenuous physical labor and living in a board and care facility where healthy meals were provided. A second episode of weight gain occurred when the job became too strenuous and aggravated a back injury, requiring Gavin to stop working. Further, he moved to another board and care setting where the meals provided were not as healthy. In short, his weight has fluctuated over the past ten years due to changes in his routine and environment. Gavin appreciates order in his life and has many adaptive approaches to meet his needs on a limited income. For example, he has been able to make adjustments and structure his activities to ensure that he has enough money to last each month. While his knowledge and skill in other areas are strong, he lacks information about how to 135 adequately manage his weight despite his strong desire to do so. As a result, Gavin makes continual adjustments to his eating routine based on misinformation, which then leads to frustration and confusion when he is unsuccessful with continued weightloss. Susan’s Story: “I just need to find a happy medium” Susan is a woman in her mid-30s who has been active for most of her life. She attends classes at a local community college and enjoys reading, writing, cooking, and many types of exercise (e.g., hiking, treadmill walking, dancing). Susan was diagnosed with bipolar disorder in her early 20s and tried for a period of time to self-medicate with alcohol and marijuana. Subsequently, she was hospitalized for a manic episode and was prescribed psychiatric medication to control the symptoms of her illness. She lives alone in a one-bedroom apartment and has a boyfriend whom she has been dating for approximately two years. A physical health problem emerges. Susan’s difficulty with weight management is a fairly recent occurrence. She has had an ongoing condition causing bladder inflammation and blockage of her urethra over the past year. Receiving medical care for her condition has caused her frustration because she feels that her physician is not taking her pain seriously. She underwent minor surgery to correct this problem; however, it was not entirely successful: Well there was something blocking the urethra, and it actually made it worse because, I mean it made part of it better, but since there was a communication between me and the doctor, he didn't speak English that well, and I asked him if he specialized in female issues and he said he did. And he doesn't. So he took out the thing that was blocking the urethra and everything, and it's just been burning and pain ever since then. 136 Over the course of three months since the surgery, Susan has gained approximately 20 pounds. Susan attributes her weight gain to symptoms of depression that were exacerbated by the physical health problems she was experiencing and the subsequent surgery to correct them: And I was even depressed before for a while but then I was even more depressed and then my doctor put me on some meds and I started taking them. Well plus I wasn't on my Abilify I guess for like a long time. So I just started to take them today so we'll see. I feel a little better today and everything. But like I'm really concerned about trying to lose weight. I try to exercise and then I feel like I'm not losing weight, and I've been eating more food too…You know, so I'm trying to like lose weight. And it's like, so it seems like for me it's really hard for me to lose weight because I've had a surgery done for my bladder like I explained to you. And that's really hard to lose weight because you end up kind of like either gaining more weight or you have to stay on a certain diet. The need to change her diet and exercise routines to accommodate her physical problem coupled with an increase in depressive symptoms has affected Susan’s eating habits. She finds herself hungrier and craving sweets, which is uncommon for her. Susan is also concerned about the weight gain side effects of one of her medications (i.e., Abilify) and has been working with her psychiatrist to decrease the dosage. Although Susan has gained weight recently, she appears to have some understanding of her diet and exercise needs. She wants to get back to a comfortable weight for her frame and is not pleased with this unfamiliar situation of weight gain: All through my life I never really ate a lot. I wasn't anorexic or anything, because I smoked cigarettes and then I drank and I experimented with drugs and stuff like that, and so I realized that if you don't eat a lot for a certain amount of time, I mean if you eat like small meals every day or eat a half a meal every day and you don't eat what the body needs, eventually when you get older, you start to get more hungry, so you eat more and more. And then 137 plus if you're depressed it doesn't make it help either. And I used to exercise a lot too and I kind of stopped that for a while because I got depressed with my bladder, so I just need to find a happy medium. Trapped in an unsafe neighborhood. Although Susan desires to return to her exercising routine of regular walking and hiking, she is uncomfortable with her neighborhood surroundings and is afraid to do these activities on her own: And plus it also it depends on the environment the person is in. If they're not in like a good environment they're not going to like want to do things if they're going to be depressed and stuff like that. I like the apartment and everything. I just don't like the neighborhood it's in and stuff like that. I just want to be in like a more safer environment so I can go out at night or go do stuff and not have to worry all the time. Because Susan feels stranded in her apartment after dark due to the unsafe neighborhood she resides in, she finds herself experiencing more depressive symptoms and eating more because she can’t go out with friends. For Susan, eating provides her with a sense of comfort and control but she is torn over whether she is really in control or not because of her recent weight gain: I end up eating food, and so I guess that's why I feel like I am in control. I guess that's the only thing I feel I'm in control of is like eating or doing stuff….I mean I'm not totally in control of eating but like in my mind I think I am. Susan wishes she could live in a different neighborhood, “where they have like a neighborhood watch, and it's safe, and there's lights out, and nice people, and safe people, and people that just go to work everyday and you know do certain things.” Lack of financial resources prevents her from living in a neighborhood without drug or gang 138 activity. Susan is considering downsizing from a one-bedroom apartment to a single apartment, so that she can afford to live in a safer neighborhood. She is worried that she will not be able to save enough for a security deposit to move because she is living on approximately $800 per month and it barely covers her expenses. Susan feels the largest obstacles affecting her weight are the symptoms of her mental illness and being unhappy with her life circumstances: Probably the depression and my lifestyle. Well, it’s not that bad a lifestyle, just, you know-- I think it’s just the depression and then-- see, so then it goes to the question of anger. It keeps going back and forth. Like I feel more depression in the last couple of days and then anger. You know, it’s like things in my life that I’m not happy with, that I don’t have control over. Attempting mindset change for body change. Susan believes that in order to lose weight, she has to change her mindset and begin to focus on the good things in her life: I think I can start to like myself more. And, you know, I’m not saying be satisfied with what I have, just be happy and think of all the things that that I do have and stop honing in on what I don’t have. I do have a lot. I mean so I don’t have a car, you know. And I mean there’s not like a lot of great things that come-- I mean it has its ups and downs, to have a car. You know, you can still get a ticket. Your car could break down, you know. Yeah, because I know to lose weight or something, if you don’t like yourself, even if you’re like massively overweight, you won’t be able to lose weight. Although Susan is motivated to lose weight, she is unsure of how to proceed. Her physician has recommended she lose weight, but he has not supported her with a plan to do so: Well, I only gained weight once in the past and the only reason I lost it was because I got sick with my bladder…. I don’t really know how to lose weight. I mean I know through exercising and eat right, that’s how you lose weight, but I never had to really be on a diet. …Probably I could go ask the doctor 139 even though I’m not too fond of it. I’m going to go find a doctor that can help me because my doctor keeps telling me to lose weight. I said, “Well, then help me, you know, put me a diet or something.” He’s like, “No, do it yourself.” Susan has been frustrated with the fact that she has not been able to find the support she needs to make the desired changes in her life to reduce her weight. Her weight gain continues to contribute to her depressive symptoms leaving her stuck in an unrelenting cycle of mental and physical health issues that build upon one another. Summary. Susan’s story reveals the complex interplay between physical and mental states and their interconnectedness with environment and activity. As a result of a physical health problem, feeling depressed, eating more and being unable to exercise, Susan has been gaining weight for the first time in her life. Further, Susan’s living situation is unsafe and not conducive to engaging in outdoor activities with friends. This also contributes to feelings of despair and loneliness. She cycles between a desire for change and her downward spiral of depression, obstacles to activity engagement, and a feeling of being trapped in her apartment. Susan has experienced a sense of not having control in her life and believes that eating and “doing stuff” are the only things she has control over. Given that her ability to engage in other activities has been limited by her physical health issues and environment, eating has become a more centrally located activity in her daily life. Susan does not see an avenue for change when caught in this dynamic of feelings and circumstances, although she is desirous of making lifestyle changes that would reduce her weight and improve the overall quality of her life. 140 John’s Story: “My fear has been stronger than my desire” John is a man in his mid-50s diagnosed with obsessive compulsive disorder (OCD) and an anxiety disorder. He currently lives independently in a single apartment and has been evicted from previous residences for hoarding, which he feels is again escalating in his new home. He has been struggling with excess weight for many years and has approximately 30 pounds to lose. Feeling unattractive and socially awkward. Due to symptoms of his psychiatric condition, John feels awkward socially and has a hard time relating to others; however, his weight problem has caused him to feel even more insecure about himself: I’ve had a problem most of my adult life with being overweight. You know, I envy the days when I was younger. You know, even in my 20s, when it seemed like I could eat anything. And I wasn’t exercising and I would remain in fairly decent shape. I find as I get older, I’ve developed a gut. And it bothers me, because I don’t feel… [that] my appearance is as physically pleasing to me and to others as I would like it to be. So I’ve had for a while now what I would consider to be a weight problem. John has a desire to lose weight because he believes it would boost his confidence and improve his social life. However, the financial pressure that he is under affects his dietary choices. He realizes that the cheaper choice is not the one that will ultimately aid in improved self-image: I feel like I'm under constant source of stress and anxiety, and I think diet. I look at myself and I think, you know, I probably would look a lot better if I were eating better and if I were exercising regularly which I don't do. I don't do either. I take the lazy way out. I take the easy person's way out. You know, I'm feeling hungry, oh there's a Burger King. I'll grab a quick bite to eat where it's relatively inexpensive, it's accessible. And I'm not in a position where I can afford to go to like a fancy schmancy restaurant, you know, eat like some 141 sort of really nice, you know, vegetarian, nicely presented meal and then leave a tip. As mentioned in the previous chapter, another deterrent to John’s weight loss is his inclination to use food as a comforting mechanism when feeling depressed, anxious or rejected. He refers to the need to fill “an emptiness inside” while expressing concern that his weight problem adversely affects his social life stating, “…I don’t feel like I’m that attractive to members of the opposite sex.” Although John’s excess weight negatively affects the way he feels about himself and how he believes others perceive him, he also believes that being overweight provides him with some protection from people getting too close. He repeatedly refers to being afraid of rejection and he perceives his excess weight as providing a buffer against such circumstances. Harboring negative views of self and others. John is quite critical of his inability to control his weight and he admits to stigmatizing views of people who are overweight in general. Although he says it is not something he is “proud of,” he tends to think of overweight people in a negative way and believes this might contribute to why he views himself so negatively in regard to his weight problem: Like, if I see a fat woman, you know, an obese woman on the bus, or even a fat guy, I tend to think of them negatively. I mean, I don’t say anything to them. But I think in my head like, I kind of put them down in my mind, “Oh, they can’t control themselves.” So I judge them. And I guess maybe that’s one of the reasons why I feel I’m being judged, because I don’t look the way I’d like to look. It’s true, I do judge them, because I mean, these are people I don’t know. I’m talking about strangers. 142 John believes that weight problems are a direct sign of psychological problems, echoing the stigmatizing societal views of those who are overweight. John elaborates stating, “people are eating because like maybe they’re lonely, they feel an emptiness in their life,” which may reflect his own views of himself and the way he uses food for comfort in his own life. John’s expression of these opinions reflects the dominant social paradigm and stereotypical views about those who are overweight or obese. Further, his words demonstrate the need to make sense out of his circumstances and those of societal others that he encounters. Dietary choice or lack thereof. Convenience plays a major role in John’s eating habits and he frequently finds himself eating in fast food establishments. Additionally, the financial problems John experiences as a result of living on a limited income provide a further incentive to eating at low-cost establishments: It’s convenient, it’s relatively cheap, and it’s right there…let me just go in there and grab a burger. I mean, you don’t have to wait too long. But I think there’s a part of me that feels kind of guilty, because I know I’m not really eating as well as I’d like to. The guilt that John experiences and his knowledge about what types of food are unhealthy do not deter him from eating these foods. Although he is certain that some foods are particularly unhealthy, he enjoys eating them and the financial benefits to eating low cost food clearly play a role in his decisions. Another barrier to John’s dietary habits relates to his skill limitations and environmental obstacles. Because he must use public transportation and there is not a 143 grocery store close to his home, transporting groceries is a source of stress and discomfort. Further, although he has cooking facilities at his apartment, he doesn’t know how to cook. While John acknowledges that he lacks cooking skills and that using public transportation for grocery shopping is a source of stress for him, he appears to take on personal responsibility for this indicating that he is “lazy” and “undisciplined” rather than attributing the barriers to performance to external sources: Well, I take public transportation and dragging groceries…on the bus, it’s a real pain. It’s a real pain in the neck. And it’s like most of the busses are crowded. If I have all these bags with me, there’s nowhere to put them. It’s a hassle, it’s a definite hassle. And it just adds to my stress. And so I think, now that I’m talking about it, I’m thinking maybe that’s one of reasons why I do eat fast food, because it’s convenient, it’s quick, and I don’t have to schlep around these bags of stuff, groceries, from a grocery store. But part of it too is, I have cooking facilities, but I’ve never really cooked for myself. And I think I’m a little bit lazy, I’m undisciplined, so it’s just easier to go to MacDonald’s or El Pollo Loco, which I like a lot. I know it’s more expensive in the long run. It’s a lot cheaper to cook at home, and it would be a lot healthier. But I’m undisciplined, and I don't really know how to cook. It makes me a little bit nervous. So I haven’t even touched the stove or the oven since I moved into this apartment last December. Even though personal responsibility for one’s actions and motivation to change are important concepts in terms of weight loss, a disability studies perspective recognizes that the environmental and skill barriers are more to blame than John’s personal characteristics. Whether he is motivated to lose weight or not, he does not have the supports in place to remove the barriers and change his dietary habits. His life is consumed with getting by to the best of his ability with limited means, opportunities and skills. 144 Motivation and lack of weight management support. It is easy to see John as a motivated person when one considers the lengths he is willing to go to advocate for his financial needs. Earlier this year, John responded to his living expense support being reduced by appealing the reduction with the Social Security office: And it’s the state of California specifically. They’ve cut me three times. Not just me specifically, but all recipients and…it’s been a source of real discomfort and annoyance for me. And I went to, what’s the word…I went to appeal it. I went to appeal the decision to Social Security. They said this comes from [the government]. There’s nothing we can do about it. They even suggested, they said, “You know, if you want, write a letter to the governor, but our hands are tied. These cuts are nothing we can do about.” So that’s made it a little bit difficult. Coming up against these types of barriers are common for John and others with SPMI. When battling issues such as one’s financial security and ability to meet basic needs, it becomes understandable how weight management, which requires a major adjustment in lifestyle, is not foregrounded as an issue of paramount importance. Further, John’s motivation for weight management is evidenced by the fact that he desires personal guidance with changing his dietary habits. Although he has not had any support provided by a physician for his weight management needs, John has had his psychiatrist advise that he exercise to alleviate some of his mental health symptoms. John would like more personalized attention to his specific dietary needs from a qualified professional: To me, that would be a real nice luxury. You know, to have someone work with me directly, one on one, really helping me plan the best possible stuff I could put in my body. And I think that’s one advantage that a lot of wealthy people have. They’ll have like a personal nutritionist who will really guide 145 them on a daily basis. And I mean, I guess there are probably books I could read, if I wanted to exert the effort and maybe not be so lazy, I could get that information on my own. But it’s just the idea of having a nutritionist sounds nice. It just sounds like it would be a cool thing to have, you know, someone who really knows about food and nutrition directing something special for your needs. For John, having supports readily available at his mental health program for making necessary changes is essential. Since he cannot access personalized services outside of the program due to his financial status, he must rely on the services provided in the program for which he qualifies. He would like to have guidance to make the lifestyle changes he desires: Yeah, it’s nice to have a leader of some kind, some sort of expert in the field. And when you have classes…then it’s something specific to go to. It gives you like a structure, as opposed to you just having to kind of do it yourself and have the motivation yourself. I mean, that’s ideal, to be self-motivated. But it sure would be helpful to have someone who can lead and show you the way…. I think what would be great is if [the mental health program], just as an example that’s sitting here in front of us, if [they] had a nutritionist on staff that you could go to. Like I see a therapist here once a week. And I’m also attending an anger management group here once a week. It’s just a 12-week course. But if [the program] had like an on-staff nutritionist, maybe they could have regular meetings, there could be regular meetings with a nutritionist or you could arrange an appointment to see the nutritionist. I think that would be great. I think that would be stellar. I think it would be so helpful. And it would just be smart. I think that would be the wave of the future. In addition to his need for information that would promote weight loss, John also believes that there is an important relationship between nutrition and mental health. In his opinion, mental health programs need to explore this and provide information to the consumers of mental health services. Although services have existed in the past to support people with skill development (e.g., cooking and nutrition classes), such classes have been 146 discontinued and members of the program are now unsupported with learning about healthy eating and food preparation: I was impressed that Antoine said that they actually had a cooking class at one point. It’s sad that they discontinued that. Maybe some people don’t think food or eating or food preparation is that important. But it certainly is, you know? John clearly expresses his need for assistance in the area of nutrition underlining his motivation for change. Without support to develop lifestyle changes, it is likely that John will continue to have difficulty achieving his goals. Discomfort and desire: The lesser of two types of misery. John’s discomfort with his weight has exacerbated the symptoms of his psychiatric illness. This has increased his insecurity about his appearance. He experiences others as regarding him unusual and this heightens his anxiety: But I've become so self-conscious… I'll be talking to someone and then all of a sudden I can tell like their facial expression is like very uneasy, very nervous, like they're looking…like they want to get away…and I'm realizing they're reflecting back probably the way I'm looking at them, probably what's happening with me facially. John has experienced himself as hemmed in by fear and feels he has missed opportunities due to the symptoms of his anxiety. However, he recognizes that this inaction has also served a protective function in his life by keeping possibilities alive and avoiding rejection: I've always had in my heart and soul certain desires, certain ambitions and what's kept me from pursuing them is fear. Fear of failure. Fear of rejection. Fear that I'm not going to be good enough. Fear that I'm not going to be able to make it. And by not doing it, it always remains a possibility. I don't know if that makes sense. You know it's like I'll boil it down to a simple situation. Let's say I see an attractive woman and I'd love to ask her out but I'm afraid 147 she's going to reject me. I'm not going to be good enough. You know, she's going to ignore me, laugh in my face, walk away, tell me she's not interested. So by not approaching her, what always exists is that possibility that yeah, maybe we could get together. That possibility remains alive…. Once I go over and get rejected assuming that that's what happens, then that's it. Case closed. You know the curtain has fallen, the door has been locked. And so by maintaining like the possibility of what could be, it's always been a way of me keeping my dreams alive. But ultimately it's extremely unsatisfying because it's one thing to have a dream that could be realized, that could be brought to fruition and made real. There's a difference between that and just like thinking about it and thinking about it is not sufficient. As a result of the extreme anxiety John experiences, he tends to avoid certain activities and situations. Recently, he has been trying to review his approach to uncomfortable activities and the need to stop isolating himself from others. Although the situations John is considering putting himself in create a feeling of dread, he recognizes that he is unhappy whether or not he engages in certain activities and is working to make a change in his life that will help him to expand his comfort level in terms of activity and interaction: [My counselor] said, "Essentially, you're miserable no matter what. You know, you're always miserable so decide like which type of misery it’s going to be” and I agree with him…. I think the key for me is to go with the situation that may be causing me misery but that's going to ultimately be causing me misery in the service of something better. So like if I stay home for example in my apartment because I'm afraid to go out and deal with people…I'm going to be in my home and I'm going to be feeling very isolated…. But if I go out I know I'm going to be miserable dealing with people, and yet the better misery is to go out because it's in the service of something better. It's in the service of some progress. It's in the service of growth. It's in the service of strength. It's like you know, going to the gym, lifting weights. It's like I don't want to lift those weights. It's uncomfortable…but I need to get in shape. So lift the weights and it's going to be miserable, it's going to be unpleasant, but at least it's in the service of making my life better… 148 John is beginning to make a connection between desire and fear in his life and deciding which one he wants as the more powerful force in his future. Through hard work, his confidence is building because he has spent time analyzing where he has been and what is possible in his future: You know part of my problem too is that I’m very sensitive. I’m super sensitive. And that’s been a big problem, you know, because things that would not bother other people, things that other people would eh, brush off, are oftentimes things that have been just like gut-wrenching for me…. Like with the OCD, I’ll obsess about it, like I can’t believe that person did that…and then it will become like an obsession. It’s like over and over and over again in my head. Whereas someone else in a comparable situation might be like all right, so the person’s a jerk, but it’s nothing personal. You know, their desire is stronger than their fear. For me my fear has been stronger than my desire. Now I think slowly but surely it’s just getting to the point where, you know, enough is enough. I have a desire. And I do think I’m capable. I do think I have what it takes. This tension between desire to act and the discomfort of remaining stagnant has created a possible moment of change in John’s life. With appropriate supports, John may be able to capitalize on this and develop the outward appearance and healthy body that he so desires. Such changes would further solidify John’s confidence and help him to feel more comfortable reaching out to others. Summary. John’s story exemplifies a tension between fear and desire. He uses food as a comfort and as a protective mechanism against people getting too close; however, he longs for more intimate relationships. John is conflicted about taking chances (e.g., asking someone for a date, pursuing friendships) due to a strong fear of rejection. His strategy for dealing with this has been to refrain from doing what he wants in order to 149 protect himself from feeling emotionally hurt. By not taking any action, John keeps the possibility alive that his desire might have been fulfilled. John has lived with the position that when nothing is ventured, then nothing is lost in his internal war between the desire for intimacy and the possibility of rejection. This lack of action leaves him feeling frustrated and powerless. John’s lack of social adeptness is compounded by his insecure feelings about not being at his preferred weight. He admits he holds negative opinions about people who are overweight and believes that they have psychological issues. For John, weight gain serves as an outward representation of poor mental health and as a result of the views he holds, leaves him feeling exposed and judged by others. Conclusion These participants’ stories provide an in-depth and vibrant representation of the complexities inherent in everyday life and the effect of these on weight management. We are able to see into the personal struggles lived by each individual, recognizing points of similarity and divergence. Using a different lens with which to view experience sharpens our focus and provides a more nuanced view of particular participant’s weight management issues. This, taken together with the broad themes delineated in Chapter 4, establishes a foundation for theoretical knowledge. In the following chapter, I provide a conceptual base for intervention development by identifying domains of concern for those with SPMI and weight management issues, which emerged during the course of this study. 150 Chapter 6: Domains of Concern and Intervention Implications I now shift focus to provide a discussion of domains of concern pertaining to lifestyle and weight management derived from the data in this study. The domains of concern include: Addressing Physical Health Issues, Maintaining Psychological Well- being and Managing Stigma, Engaging in Valued Activities and Connecting with Others, and Providing for Everyday Needs. As specified in Table 2, each domain of concern contains two to three subdomains through which the problem area may be addressed. Table 2 Domains of Concern and Subdomains for Addressing Weight Management Issues in Adults with SPMI Domain 1: Addressing Physical Health Issues Accessing information from providers and asserting oneself effectively Monitoring health concerns and controlling illness-related symptoms Domain 2: Maintaining Psychological Well-being and Managing Stigma Controlling stress and symptoms through activity Managing overwhelming emotions and developing confidence Identifying stereotypical views and developing a complex notion of self Domain 3: Engaging in Valued Activities and Connecting with Others Exploring personal ideology and approach to activity participation Establishing meaningful relationships Advocating for needed programs and services Domain 4: Providing for Everyday Needs Examining safety issues and acquiring independent living skills Developing knowledge of nutrition and activity Maintaining financial stability Using qualitative research to determine domains of concern for a particular population is well-established in the USC Division of Occupational Science and 151 Occupational Therapy. The purpose of this type of research is to develop knowledge about salient issues affecting the lives of people for whom a problem has been identified (e.g., diminished health and wellness for aging adults, persons with spinal cord injury and pressure ulcer risk) and then using the information to guide development of a lifestyle intervention addressing the pressing needs of the potential population. This type of research is also consistent with a logic model approach to intervention development, which highlights the importance of uncovering the needs of those exhibiting a particular problem prior to conceptualizing intervention. In the interest of remaining true to the theoretical foundations selected for this research (e.g., occupational science and disability studies) and the significance of contextual barriers in the lives of these participants, sociopolitical and socioeconomic issues are viewed as constructs that surround and permeate the domains of concern and their respective subdomains. This research highlights issues of power, access, and agency in order to advance the particular concerns of this population. That is not to say that personal issues are not relevant or will not be discussed. Rather, in this chapter, I attempt to weave personal and social justice issues together to provide a complex conceptual framework for the development of a possible future intervention. The following interrelated domains of concern and subdomains emerged as key issues for participants in this study who had SPMI and weight management difficulties. The domains of concern with their respective subdomains are listed separately for clarity; however, they are inseparable from one another and overlapping issues will be frequently noted to demonstrate this interconnectedness. In the latter portion of this chapter, I 152 conclude with implications for occupational science and occupational therapy and guidelines for lifestyle intervention based on the results of this research. Domain 1: Addressing Physical Health Issues Weight management issues are a well-known risk in this population and are attributed to myriad reasons (e.g., psychotropic medication side effects, symptoms of illness leading to inactivity, poor diet, lack of exercise, low socioeconomic status, etc.). Frequently, participants in this study reported being surprised about their weight gain or loss and posed several explanations for why this occurred. For some, changes were attributed to subtle changes in daily life (e.g., medication adjustment, eating more fast food) and for others major alterations to environment or routine resulted in their weight change (e.g., incarceration, eliminating alcohol or illicit substances). Yet others remained confused about their weight fluctuations and attributed it to a personal characteristic such as being “lazy” or “getting older.” Weight changes are insidious and occur within the context of daily life as it unfolds over time. Moment-to-moment decisions (Jackson et al., 2010) will not often result in a catastrophic health consequence for someone moderately over or underweight; however, the possibility of this escalates with people who are already experiencing health-related problems (e.g., diabetes, high cholesterol) or who are at the farthest ends of the weight continuum. Additionally, singular choices repeated over time compound possible deleterious effects on health and quality of life. Addressing the physical health concerns of people with SPMI has been established as an area of need in other literature (Beebe, 2008; Casey et al., 2004), a 153 sentiment echoed by the participants in this study. Attention to physical health and wellness was infrequently addressed by the mental health program of which they were a part. The primary concern of the program attended by the participants appeared to be on maintaining psychiatric stability through medication provision and contact with mental health professionals. Although the importance of minimizing psychiatric symptoms and maintaining mental health should not be understated, failing to provide for the physical health needs of participants was problematic due to the fact that their main point of service access was through the mental health agency. Weight management was largely unattended to and in fact, some participants felt the program undermined their progress. Specifically, a lack of access to activities and informational resources relative to managing weight was noted and meals provided were typically prepared in an unhealthy manner (e.g., fried foods). It would be simplistic to attribute these problems to the particular program and not consider the larger sociopolitical structure in which it resides. In the United States, a lengthy history of dividing mental and physical health services exists. Within a biomedical approach to health, the dominant paradigm, specialties abound. Encroachment on another provider’s area of expertise is viewed as unprofessional and in many cases unethical. Although this program technically operates under a psychosocial rehabilitation model, it appears that the dominance of the medical model pervades, as evidenced by the program’s focus on psychiatric symptom management. It can also be theorized that healthcare workers may be hemmed in by the system in which they work and the expectations of what constitutes appropriate treatment in this 154 setting. Further, they may not have the knowledge or skills to support participants in addressing their physical health needs. During the course of this study, I engaged with many healthcare providers who worked either in this setting or in others. Not once did I encounter a negative response, nor a lack of care and concern about the issue of weight management on the part of the healthcare professionals. To the contrary, they responded with interest and comments such as, “we really need [someone to] address this,” or “this is a major issue.” Many of the providers expressed hope that information gleaned from this study would be shared and I was often asked if I was planning to develop a weight management program through this research. Overall, the mental health professionals were hungry for knowledge and support to provide for the weight management needs of the consumers they served. Physical health issues related to weight management, either experienced or anticipated, were a concern to the vast number of participants. Many expressed fear and experienced stress about the state of their physical health. At times, participants reported that primary care physicians were helping them to manage physical health issues by providing prescription medication, suggesting routine visits for monitoring health status, and providing general recommendations for weight management; however, the majority of participants had difficulty making necessary changes, fitting recommendations into their lifestyle, or were misinformed. Other participants opined that their primary care physicians had never addressed weight management with them at all. Given that weight management is such a pressing issue for people with SPMI and that it is linked with excess mortality, one might assume that physicians would address 155 this topic with any such patient. Unfortunately, this is not the case and weight management only became a physician’s concern when a related physical health problem emerged. As such, participants experienced health problems that might have been prevented with appropriate service provision. Again, considering this from a sociopolitical standpoint, the pervasiveness of the biomedical model provides a view of the body as fixable after something goes wrong. The support provided to the majority of participants by physicians is inadequate to meet their needs. However, this is not simply a provider issue. Physicians work within the confines of the healthcare reimbursement system and may be driven to address primary care issues as they arise in a relatively brief visit. Managed care has resulted in external limits being placed on providers to deliver services that are reviewed by and either accepted or denied by insurance companies or oversight bodies. Further, they are pressured by the need to treat more patients in shorter time periods in order to maintain viable practices. As such, physicians may lack attention to non-billable issues due to the external constraints of their own work environment. The current healthcare reform movement in this country and the subsequent passing of the Patient Protection and Affordable Care Act and the Health Care of and Education Reconciliation Act of 2010 may prove to alleviate some of the problems encountered by increasing access to healthcare in this population (National Alliance for the Mentally Ill, 2010). For people with SPMI, however, the long history of treatment focused primarily on psychiatric issues and the lack of attention to preventive physical healthcare will be challenging to overcome. 156 I will now discuss the two subdomains under Addressing Physical Health Issues, which include: (a) accessing information from providers and asserting oneself effectively, and (b) monitoring health concerns and controlling illness related symptoms. These subdomains represent areas for change to be considered when conceptualizing weight management intervention in this population. Accessing information from providers and asserting oneself effectively. For many participants in this study, accessing detailed information about weight management from their healthcare providers was a cumbersome and fruitless process. In many cases, healthcare providers failed to address weight management with the participant and the participant did not seek further support in this area. When weight management was addressed, the topic was broached only after a potentially serious physical health problem emerged. Even then, participants were provided cursory guidelines and were left attempting to modulate their food intake or initiating activity participation. This frequently resulted in the participant’s inability to make adjustments that would significantly and consistently impact their weight in the desired direction of change (e.g., weight loss or gain). In one case, a participant who was a strong self- advocate was able to obtain more lifestyle-relevant information from her primary care physician and therefore implemented successful and lasting changes to her diet and activity in daily life. The need to assert oneself and express personally desired changes to one’s healthcare provider is an issue of paramount importance. To do so, the participant must have a clear sense of his or her desired changes and knowledge of the type of support that 157 should be expected from various healthcare professionals. Given that the main point of healthcare contact for these participants is within the public mental health system, there is a need for the mental health program to provide preventive information relative to weight management in a way that is personally applicable to the participants’ daily lives. Strategies for tailoring general recommendations to the particular needs of individuals may be useful in helping participants to achieve their weight management goals. Further, ongoing support is essential. Because eating is a basic survival need that participants must engage in and caloric intake is directly related to energy expenditure in activities, participants are at risk for recurrence of weight management problems as circumstances and personal abilities shift over the course of one’s life. Monitoring health concerns and controlling illness-related symptoms. After diagnosis of a physical health problem, many participants remained under the supervision of a primary care physician to monitor their health issues. Examples of diagnoses for which participants were under a physician’s care included high cholesterol, high blood pressure, diabetes, acid reflux and the like. Unfortunately, participants were often not able to identify what they themselves could do to monitor their own health issues in the interim between medical appointments or how these conditions interacted with their daily eating and activity needs. For example, one participant with high cholesterol and blood pressure relied on check-ups with his physician to determine whether these remained areas of concern. While he was aware that he should avoid fried foods, he was unable to do so because of the type of food prepared at the program where he received the majority of his meals. Further, he did not know how to monitor his own 158 blood pressure and did not have the resources to purchase equipment that would make this possible. A second participant diagnosed with diabetes indicated that he managed his diabetes by eating “less food” rather than abstaining from certain types of food. Although he knew how to monitor his blood glucose level, he was unable to reliably control it due to his approach to eating. Again, lack of resources, knowledge and support for making lifestyle-embedded changes hindered their ability to effectively manage weight-related comorbidities, thereby, putting participants at unnecessary risk. Domain 2: Maintaining Psychological Well-being and Managing Stigma Maintaining psychological well-being was another key concern for participants in this study. Participants often experienced stress due to health issues, financial limitations, difficulty meeting basic needs, lack of activity engagement and limited social networking opportunity. This stress often led to exacerbation of psychiatric symptoms (e.g., depression, anxiety) and feelings of powerlessness. Further, not being at one’s desired weight compounded feelings of stress. Changes in routine can pose a major barrier to weight management. For example, Susan experienced weight gain after a minor surgery that kept her housebound for a short period of time. As a result, the depressive symptoms of her bipolar disorder were exacerbated and she found herself eating more than usual and not exercising although she had equipment (i.e., treadmill) available to do so. She has been unable to return to her desired weight since this occurrence. Often for people with SPMI, psychiatric symptoms contribute to weight changes, but also, the weight changes alone can contribute to symptom exacerbation. As a result, participants are swept up in the current of a weight 159 management-psychiatric symptom management whirlpool where they have trouble breaking free of the cycling current and regaining footing on solid ground. It is also well-known that people with SPMI experience societal bias due to their psychiatric conditions. Additionally, weight-based stigma has a lengthy history in the United States and weight-based discrimination continues to rise (Andreyeva, Puhl, & Brownell, 2008; Carr & Friedman, 2005; Friedman & Brownell, 1995; Kushner & Foster, 2000; Puhl & Brownell, 2001, Puhl & Brownell, 2006). It can therefore be argued that people with SPMI and weight management issues are at risk for experiencing dual stigma. I will now discuss the three subdomains under Maintaining Psychological Well- being and Managing Stigma, which include: (a) controlling stress and symptoms through activity, (b) managing overwhelming emotions and developing confidence, and c) identifying stereotypical views and developing a complex notion of self. Controlling stress and symptoms through activity. All participants in this study expressed stress as a major barrier to their health and well-being. In most cases, stress arose from lack of resources and the requirement to meet basic needs on a limited income. The tension between providing for one’s basic needs while maintaining engagement in pleasurable activities that gave quality to one’s life provided a source of unrelenting frustration. In many cases, participants used food as a self-soothing mechanism and were unable to identify other realistic healthy ways to seek relief from the constant pressure they were under. For example, a few participants indicated that going to see a movie provided enjoyment and relaxation; however, they 160 were usually unable to do so due the cost-prohibitive nature of the activity. Occasionally, participants chose to engage in an activity (e.g., going to the movies, playing billiards) that provided relief from the stress momentarily, only to find that they then experienced stress over not having the means to meet other basic needs (e.g., eating, paying a bill). In many cases, psychiatric symptoms were exacerbated by stress experienced. This in turn impacted the participant’s ability to effectively manage weight due to the tendency to overeat, make unhealthy food choices for comfort, or refrain from eating due to lack of appetite. Further, pleasurable activity engagement often diminished with an increase in depressive or anxious symptoms relative to stress. Stress also emerged as an area of concern when accessing healthcare or program resources. In some cases, stigmatizing experiences from primary healthcare providers perceived by participants resulted in frustration. In other cases, participants felt as if program staff members weren’t hearing their voices or that program resources were not addressing their activity needs. Another area of stress perceived by participants related to an inability to form meaningful connections with others due to lack of opportunity or social discomfort. Engaging with other clubhouse members was hindered by a lack of planned activities or equipment (e.g., billiard table) that would promote spontaneous activity engagement and an interest in attending the clubhouse. Further, social anxiety and fear of rejection added to difficulty in making new friends or pursuing romantic relationships. Negative feelings about oneself related to excess weight or underweight status compounded feelings of inferiority and social discomfort. 161 Being able to identify low to no-cost healthy pleasurable activities, developing an assertive approach to expressing needs, having the opportunity to establish meaningful connections with others, and adjusting one’s view of oneself as desirable were all important aspects of stress reduction. The struggles with the ongoing stress encountered by these participants not only negatively impacted their ability to manage their weight, but the weight problem itself compounded stress experiences in a cyclical fashion. Managing overwhelming emotions and developing confidence. Participants in regard to their weight commonly expressed emotions, such as fear, anger, frustration, and despair. The desire to manage one’s weight effectively coupled with limited success, resulted in intimidating health problems, anger and frustration about the inability to engage in valued activities, and feeling unattractive and insecure. Similar to their approaches to dealing with stress, participants used a variety of methods to address negative emotions; however, this process deserves separate mention from the above process for the following reason. Overwhelming emotions were a central factor in the lives of most of the participants and to subsume it under controlling stress and symptoms would not adequately foreground the emotional aspect people have in dealing with daily life. It would be too easy to confuse these naturally occurring emotional states with symptoms of psychiatric illness. The emotions experienced by the participants when they had difficulty meeting their weight and activity goals and the subsequent feelings of despair reflect a common human experience. The difference for people with SPMI and weight management issues from those without lies in the fact that these negative emotions have the potential to exacerbate 162 symptoms of their mental illness and further undermine their success with weight management. As such, learning to deal with these types of emotional states is an important area in need of attention. Developing the ability to modulate one’s negative emotional responses to daily experiences, especially when faced with so many external barriers to living an abundant life, requires a complex process of adjusting one’s expectations, outlook, and approach to everyday activities. While a psychological approach might focus on cognitive-behavioral techniques to managing overwhelming emotions, an occupational science perspective emphasizes the importance of intervening at the intersection of activity and context from which experience emerges. For example, a cognitive-behavioral approach to dealing with negative feelings about oneself based on barriers faced in accessing community resources would be more likely to focus on changing the person’s “irrational” response to obstacles encountered. Occupational science lends a different perspective to the therapeutic encounter by validating the barriers that exist and assisting people to navigate activity obstacles in the moment with full appreciation for the complexity of the person’s experience. By beginning at this level, opportunities for positive experiences in daily life are supported thereby building confidence and providing opportunities for a positive emotional shift to occur. For most of the participants, positive emotions (e.g., happiness, pride) relative to weight management were infrequently experienced and confidence was undermined. Lack of success with weight management, although largely a result of the person’s socioeconomic status and lack of proper contextual supports, resulted in feelings of inadequacy. Further, comparing oneself either to others or a remembered image of 163 oneself from days past resulted in feeling inferior and unhappy. Representations held in mind about how one’s body should look did not often match the image of how one did look and at times, this created a sense of losing oneself. An occupational science framework provides a way to address emotional states, identity and life satisfaction in this population, through the use of contextualized everyday activities. Identifying stereotypical views and developing a complex notion of self. Stereotypical views serve to help people make sense of the world according to their ideologies and categorization of particular groups as having particular features is not an uncommon phenomenon. As previously mentioned, negative views about people who experience mental illness or those who are overweight are deeply ingrained in much of Western society. An interesting finding of my study is that participants expressed assumptions about others who were overweight based on stigmatizing attitudes and stereotypical views, although most of these participants were overweight themselves. Participants frequently used negative terms (e.g., lazy, couch potato, depressed) to describe their beliefs about the characteristics of societal others who were overweight, which is consistent with commonly held views and perceived weight-based bias present in the broader population (Puhl & Brownell, 2006; Puhl et al., 2008). For example, John articulated his own judgments of others who were overweight and, through discussion with other participants, realized that there was a possibility that this might also affect his own views of himself. Through analysis of these data, a notion of internalized stigma surfaced. Although John questioned whether or not he was making reasonable judgments 164 about others, he continued to express these stereotypical views throughout the study, which provides evidence of how deeply entrenched these inaccurate assumptions can be. Further, several participants tended to apply cognitive generalizations to themselves in dichotomous ways (e.g., having self-control v. lacking self-control), rather than characterizing their experiences of self on a continuum where they fluctuated back and forth based on their shifting life circumstances, contexts of power and access, and ability to participate in everyday activities. Many participants were self-blaming, identifying themselves as “lazy” despite evidence to the contrary. I argue that these participants’ abilities to meet daily basic needs and manage their weight concerns were precluded by access to few community resources, and negligible social and professional support despite mental and physical health issues. Laziness, in turn, is not a defining characteristic of this group. The tendency to apply these generalizations to others as well as oneself suggests a need to carefully examine stereotyping predispositions in one’s life and adopt a more complex notion of self that highlights the uniqueness of each individual. The occupational science and disability studies perspectives that framed my study afforded a particular interpretation of the experiences of these participants. This analytic strategy suggested that a revision of this self-told story is needed in order fully address weight management in the participants’ lives. Occupational science, which recognizes complexity not just within the person, but also within the myriad activities and contexts within which people engage, provides a useful approach for addressing these issues. 165 Domain 3: Engaging in Valued Activities and Connecting with Others Participants experienced difficulty engaging in valued activities due to excess weight and physical problems. Playing softball, taking a walk, lifting weights, and other activities requiring exertion were either too strenuous or resulted in painful effects afterward. Another related issue was the lack of having an activity partner for encouragement and socialization. While it is commonly accepted that most people have a need for connecting with others, the profundity and aggregate of such social interactions varies widely. However, receiving validation and fellowship through congregating with others to a small or large degree enhances the quality of one’s life. For those with SPMI, these connections (i.e., friendships) are so important that proponents of the social support movement suggest that what is needed is not more interactions with professionals, but more opportunities for meaningful relationships with non-professionals (e.g., friends, peers, romantic partners). The perspectives presented by the participants in this study supported this contention. The process of becoming and remaining connected is impeded by limited opportunities to develop a social network. Psychosocial rehabilitation clubhouses provide a safe environment within which to establish relationships; however, for many of the participants, the lack of planned communal activity (e.g., exercise groups, cooking classes) and activity equipment limited their interest in attending the program. Further, inconvenient timing of offered opportunities was recognized as a barrier to participation (e.g., early morning planned activities were suited to staff scheduling but inconvenient 166 for members). Given that only a few activities were offered, the participants indicated they did not have a compelling reason to come to the clubhouse more frequently. They expressed that attendance had dwindled as a consequence. For example, Gavin lamented that in previous years the clubhouse was well-attended due to the variety and types of activities offered, as well as having access to equipment conducive to spontaneous activity engagement. Kevin expanded this focus on engagement by highlighting the importance of social activity in the community in which he lives. He has noticed that people become bored and frustrated when they do not participate in activities at his apartment complex, which is an independent subsidized recovery-based dwelling. He believes that opportunities to connect with others while being engaged in activity mitigate the desire to return to substance and alcohol abuse. Opportunities such as, domino night, pilates, yoga, and trips to the park, which once were deemed essential at his residence are not provided as they once had been. Kevin expressed hope that such activities will again be organized and that consideration will be given to the needs of potential participants (e.g., time of day, interests, accessible locations) to boost participation and encourage relationship development. Weight problems also contributed to difficulty developing desired relationships. Feeling insecure about oneself resulted in fear of putting oneself “out there” for possible friendships and hampered romantic opportunities. The resulting isolation and loneliness was linked to overeating as a way to cope with daily life. For example, John found food to be a source of comfort when he was feeling anxious about something or rejected by 167 someone but the resulting weight gain from this then hindered his confidence. Consequently, he hesitated to reach out to others for friendship or a possible romantic relationship. The feelings of inferiority he developed by being overweight were at cross- purposes with the positive feelings he experienced when eating his “comfort” foods. To further elucidate the above domain, I will now discuss the three subdomains under Engaging in Valued Activities and Connecting with Others, which include: (a) exploring personal ideology and approach to activity participation, (b) establishing meaningful relationships, and (c) advocating for needed programs and services. Exploring personal ideology and approach to activity participation. All participants in this study identified activities of interest or value. They frequently discussed elaborate reasons for choosing certain activities over others and, in some cases, their worldview became an important topic of discussion. Developing an understanding of the relationship between one’s personal ideology and approach to activity is necessary if participants’ experiences are to be understood in more complex terms than simply having a preference for this activity and a dislike for that. Frequently, people with SPMI are believed to have difficulty identifying their interests or engaging in activity participation due to symptoms of their illness. While there may be points when one’s interest or ability to participate in particular activities is diminished during any illness or injury, the findings of this study suggest that viewing participation in terms of interest and motivation alone is too simplistic. For example, Laura neither engaged in cooking nor had a desire to learn to cook. This resistance was derived from the meaning she ascribed to that particular task, which was based on a history of watching her mother 168 prepare meals daily for a father who did not appreciate them and her views about gendered activity expectations. For Laura, not cooking became a way to assert her independence and autonomy after years of witnessing her parent’s interactions during childhood and adolescence. Further, Laura was involved in an abusive relationship with her husband for most of her adult life and this may have impacted her views on the activity. In an earlier chapter, I termed this an “occupation of healthy resistance” because in some cases, not doing something can be an expression of personal agency and power that serves to protect one from feeling further oppressed. I theorize that issues of power, action, vulnerability and protection are often involved in one’s chosen activities and may be especially salient concerns for those with SPMI who have often been forced into compliance with particular activities due to past relationships or oppressive circumstances. Participation and disengagement must be viewed in terms of one’s contextualized history and worldview if these concepts are to be fully understood. Many participants had difficulty performing activities as they once had. Whether due to weight gain, side effects of medications, or the effects of aging, inability to engage in particular activities was a frequently cited source of frustration and disappointment. Given that one’s abilities shift over the course of one’s life, the need to adjust physical activity expectations and approaches to participation may theoretically apply to any person. However, for those with SPMI and weight management difficulties the problems with performance may be particularly troublesome, as it appears the participants in my study had a tendency to feel responsible for the fact that they couldn’t do something rather than recognizing how personal issues and life circumstances combined to limit 169 their participation. Setting achievable expectations and adapting one’s approach to an activity or the features of the activity itself can provide some relief from the emotional and physical discomfort associated with participation while preserving the need to engage in valued activities or those which are personally meaningful. Establishing meaningful relationships. People are social beings and the need for companionship, to a greater or lesser extent, exists within each of us. Unfortunately, opportunities for making meaningful connections can be limited by circumstances preventing opportunity, as well as one’s comfort level with reaching out. For the participants in this study, developing meaningful connections with others (e.g., friendships, romantic relationships) was frequently hindered due to limited opportunity and feelings of insecurity due to their weight issues. The clubhouse, deemed a place of fellowship in years past, had a drastically downward shift in member attendance after equipment for spontaneous activity engagement was removed and group activities largely ceased. According to participants, the current focus of the clubhouse is on medication management and therapeutic counseling for psychiatric symptom control. In large part, this may be attributed to changes in the state-funded healthcare system which have resulted in only offering services that are deemed medically necessary and resulting concerns over scope of practice issues. Although many members attended the lunches offered during the week, there was little reason to arrive early or stay afterward. As a result, social networking has been thwarted and members are losing touch with one another. 170 The need to cultivate social connections is especially important for those with SPMI who may have more interaction with professionals than they have with friends. As previously mentioned, the social support movement suggests that people with SPMI need additional opportunity to develop social networks with friends, lovers, and family as opposed to additional “treatment” for their illness. Through supportive and lasting relationships, one is able to develop greater stability and enjoy a better quality of life. Occupational science, with its strong stance on the connection between the social nature of activity participation and human flourishing, eschews an overly medicalized approach to care. Given the fit between occupational science and the social support and recovery movements, occupational scientists are uniquely positioned to develop intervention approaches that place participation in everyday life at its center. An approach to weight management for those with SPMI must consider the significance of social relationships and the ability for these connections to produce changes in other areas. For example, participants in this study identified the importance of having a friend to do activities with for support, validation, and guidance. Further, establishing social relationships has the potential to decrease isolation, change stereotypical views of others, create a more complex view of oneself, and support advocacy and service access efforts. Advocating for needed programs and services. As previously mentioned, participants reported a sense that their “voices” were not being heard at their mental health program. Many of them had stopped attending member council meetings or expressing their needs to their service coordinators because 171 they did not believe that they had power to change aspects of the program. Frequently, they cited budget cuts and the “economy” as reasons for why the program had changed and many of them expressed hopelessness about impending service changes. A few participants remained quite active in the clubhouse, but even they indicated that they perceived they were not being listened to when they tried to express their concerns and ideas. As with any endeavor for change at a service or policy level, a critical mass of consumers is needed. Unfortunately, the decrease in attendance has left only a few members remaining who are strong advocates to speak for many who are inactive. Although these members continue to have substantial relationships with program staff and are respected members of the clubhouse team, they alone do not form the critical mass necessary to be heard at the levels of upper management or government where mandates for change originate. As a result, these participants expressed frustration and despair about the dwindling attendance levels and reductions in needed services. Approximately three-fourths of the participants expressed strong interest in a weight management program that addressed a wide variety of lifestyle issues (e.g., exercise, cooking classes, nutrition for mental and physical health, medication knowledge, affordable shopping, combating transportation problems, developing activity partnerships, decreasing stress, finding free events and activities, changing the content of program lunches, sharing resources, etc.) and they hoped that “USC” would develop such a program. For many of the participants, willingness to enroll in the study was a based on 172 a desire to discuss weight management and many were pleased to learn that their input was desired as a preliminary step to possible program development. The need to assist participants with developing advocacy skills and finding their “voice” is essential if their needs are going to be met not only in relation to weight management but also for healthcare in general. Given the long history of oppression and coercion of people with SPMI in the United States, it is not enough to tell them to speak out on a topic. Many of the participants needed support in developing the skills and confidence to assert themselves and deal with the disappointments that are inherent when individuals or small groups embark upon grand change. Appreciation must be given to the fact that the historical approach to the needs of this group from an intervention standpoint has been to do to them, not for them or with them. Individuals with SPMI also must fight against attitudinal barriers that exist. For example, if someone is being assertive or stating valid feelings of frustration, others may be predisposed to viewing them as non-compliant, argumentative, or otherwise symptomatic. Being assertive is not a task lightly undertaken for someone with SPMI when considering the potential ramifications of being viewed as hostile toward a system upon which one is dependent for survival. Domain 4: Providing for Everyday Needs All of the participants in this study lived on governmental support with an average income of approximately $800 per month. Although they resided in subsidized housing complexes, surviving on such limited funds often resulted in participants running out of money within the first part of the month and then struggling to get by until their next 173 check arrived. Being responsible for paying for housing, utilities, clothing, transportation, and food costs required constant adjustment and planning. These financial limitations meant that participants’ efforts to carry out everyday activities were routinely thwarted by obstacles. Because weight management cannot be divorced from eating, attempting to manage one’s weight is fraught with frustration while operating on a limited budget. Hunting for healthy food choices took low priority when participants were faced with overwhelming hunger and the need to obtain something quickly. Participants frequently resorted to convenience foods that were relatively inexpensive and easily obtained. Additionally, finding low-cost, but filling, and easily transportable foods was a priority. For example, Hakim stated that he would like to have more fresh foods and fruit in his diet but he noted that these items are cost prohibitive. Although he and others were often aware of healthier food choices, the need to stretch the food budget often resulted in eating fast food from the “dollar menu” or purchasing items low in nutritional value and high in caloric content. Another participant, Carlton, noted that his diet changed from the beginning to the end of the month as his funds were depleted. In the latter part of the month, he was only able to obtain canned vegetables and boxed dry goods from the local food bank. Hunger was a formidable barrier compromising his ability to focus on eating well and he and others spoke of frequent bouts of hunger-related physical discomfort (e.g., feeling “wobbly,” getting headaches). For many of these participants, the end of the month was experienced as a period of temporary deprivation. This interval would often become a time when they would fantasize about what foods they would spend their money on when their monthly check 174 arrived. Unfortunately, they found themselves back in a cycle of deprivation again after a week or two. Unable to break the cycle, enjoying desired food was a rarity. Transporting groceries was another difficulty faced by many of the participants. For example, taking groceries from the store to his home on public transportation posed a problem for one participant. “Lugging” groceries on a crowded bus was viewed as a serious inconvenience and became a major deterrent to shopping. To avoid conflict, this participant often reported frequenting fast food restaurants for convenience. A second participant was dismayed when taking a grocery cart off of the premises of his local market was no longer allowed. A third participant expressed that his residence was inconveniently located in relation to a grocery store, thereby limiting his ability to shop. A fourth participant who did not have funds for bus fare reported difficulty carrying groceries when walking home. These unalterable obstructions to food procurement constituted a major deterrent to healthy eating. Knowledge and skill in the area of meal preparation was yet another barrier to nutritional health. For example, several participants expressed that they did not know how to cook because they had not been taught and others did not like or want to cook. Meal preparation was intimidating for many participants who did not know how to operate their kitchen appliances. For example, one participant lived in his apartment for almost one year believing that his oven was broken when it was not. When the desire to prepare a holiday meal arose, the participant called the manager but learned too late that he simply needed to push in the dial before turning it to light his gas oven. 175 Personal values, individual priorities, and one’s philosophy and worldview play key roles in what participant’s define as an essential need. For example, Calvin noted that despite the expense associated with having internet access and cable television and the impact this has on his ability to have enough money for food through the end of the month, he has a need to remain aware of what is going on in the world. He is politically active and enjoys keeping up with the latest news. He also says that this form of being engaged in the world helps to keep him on an even keel and "out of his head," which is important for his psychological well-being. Another participant, Laura, does not give much attention to her food choices and would rather spend her money on activities she enjoys such as playing billiards or going to a movie with her children. As such, she opts for fast food or inexpensive items such as bologna, hot dogs, and bread. Further, her personal philosophy and worldview affect her lack of interest in cooking. As stated previously, she views women who stay at home and cook as oppressed based upon a history of having watched her own mother and feels that the “roles we’re supposed to play in life” are partly determined by how “we’re brought up as little girls.” I will now discuss the three subdomains under Providing for Everyday Needs, which include: (a) examining safety issues and acquiring independent living skills, (b) developing knowledge of nutrition and activity, and (c) maintaining financial stability. Examining safety issues and acquiring independent living skills. Participants had a need to protect themselves from unnecessary harm and in so doing, their activity participation was often limited. Whether someone chose to stay indoors because they viewed the neighborhood in which they resided as unsafe or 176 refrained from cooking an unfamiliar item from the food bank for fear of burning the pot, safety was a key concern for many participants. Once an activity was deemed unsafe, combined with other factors, it would ultimately engender apathy. Not having the requisite skill-set and tensions associated with the struggles to meet basic needs appeared central to engagement in particular activities. It was not, as some research suggests, a psychiatric symptom of avolition. For these participants, apathy related to survival, maintaining personal safety and avoiding unnecessary energy expenditure. For example, it is not sensible to argue that the need to teach oneself to cook beans obtained from the food bank should pre-empt watching television and resting before bed after: (a) walking to the food bank, (b) standing in line for two hours, (c) walking to work to volunteer for six hours, and (d) carrying groceries while walking home. This routine would be challenging without having to simultaneously deal with a chronic illness, medication side effects, and poor nutrition. For the participants, sometimes the safe choice was the choice to not do something novel. That said, when time, energy, and funds permitted, many participants were interested in novel experiences and even longed for them. Another participant would notice a feeling of getting “wobbly” when he had not eaten and was away from the house. Given his physical reaction, he often purchased something convenient from a fast food establishment. Although he endeavored to make healthy choices, he often found them to be cost-prohibitive and inconvenient. Given his circumstances, he made the best choice he could envision to keep himself from starving or becoming sick from lack of eating. 177 It appeared that many participants desired to engage in an abundance of activity, particularly those that would promote health and well-being, but given perceived safety threats, they refrained from doing so. It seemed that they lacked neither motivation, nor volition. Precaution, however, pre-empted these drives. At times, the need for safety or reducing energy expenditure resulted in unhealthy choices. Participants desired assistance with acquiring independent living skills at home and in the community; however, resources to support these efforts were lacking. Developing knowledge of nutrition and activity. The majority of participants were virtually unaware of the relationship between caloric intake/nutrients required and energy expenditure/activity participation; however, this was not because they did not desire the knowledge. Quite simply, they had never been informed about the relationship between eating and doing other activities. Further, most of those who were attempting to lose weight were reducing their food intake in ways that have been reported in the literature to not be conducive to weightloss (e.g., eating one meal per day, eating infrequently or not eating, refraining from one type of food) (Kolata, 2007; Willett & Skerrett, 2005). All of the participants were eager to learn more and some expressed disappointment that I did not provide information on what they could do to facilitate weight management during the focus groups. Remarkably, the majority of participants were unaware that routine activities (e.g., walking several miles to a program, volunteer-related duties) required energy expenditure. In their minds, they situated routine activities outside the realm of exercise. Consistent with this view, exercise was discussed as a separate entity, such as, lifting 178 weights, going for a hike, or playing softball. A limited understanding of caloric expenditure required for daily life activities impinged participants’ ability to grasp the concept of caloric intake needs and how natural activities could impact weight management. Maintaining financial stability. As previously indicated, financial concerns were key to how each participant survived. All participants lived on governmental support and as such, they grappled with maintaining financial stability on a daily basis. As when one is standing astride the center of a child’s playground teeter-totter while trying to stabilize it and keep it level, these participants attempted to maintain stability with needs on one end and wants on the other. Similar to standing on the playground teeter-totter, eventually one fatigues or loses focus momentarily and one side comes crashing down into the dirt. Resilience in both scenarios is crucial to success, as both are difficult activities; however, for a person trying to balance the playground teeter-totter, there are no dire effects if he or she is unable to accomplish the feat. The person can try repeatedly, stop when fatigued, and walk away without consequence. For the person with SPMI and financial problems, this balancing act is much more precarious and the consequences may be dire. Trade-offs must constantly be made between engaging in needed versus desired activities. Resilience and vigilance are not optional but required and one cannot easily walk away laughing and try again tomorrow without remembering problems from the day before. Even pursuing paid employment can be an intimidating process, as job security is not guaranteed and governmental benefits, however fluctuating, are ongoing. Given that 179 financial stability has such a large impact on one’s ability to meet the needs of everyday life and provide opportunities for participation in desired activities, participants require support to develop workable solutions that fit their specific circumstances. Intervention Implications for Adults with SPMI and Weight Management Issues The findings of this study highlight the value of an intervention development process that follows a logic model framework to build an in-depth understanding of the needs of particular populations prior to intervention conceptualization (National Institute of Mental Health, 2008; Substance Abuse and Mental Health Services Administration, 2002). Without such research, important areas of focus and strategies for change may be overlooked. Although interventions developed for the general population have been adapted for those with SPMI (Centorrino et al., 2006; Jean-Baptiste et al., 2007; Littrell et al, 2005; Weber & Wyne, 2006), my study shows that a complex understanding of the supportive and risk-related factors to weight management for those with SPMI is essential as a preliminary step to intervention development given the unique challenges experienced by this population. Occupational science has a strong commitment to addressing global health issues and disparities through research that supports community-based intervention development. The present study is an extension of a current line of research that has been successfully used in the University of Southern California’s Division of Occupational Science and Occupational Therapy for more than a decade, as previously cited. By providing a qualitative exploration of the contextualized everyday weight management experiences in the lives of those with SPMI, I have attempted to lay a theoretical 180 foundation for use as a precursor to the development of a Lifestyle Redesign® intervention weight management program for people with SPMI. This study represents a new area of focus for occupational scientists interested in Lifestyle Redesign® and highlights sociopolitical action as an important facet in addressing the needs of this group. For underserved populations such as those with SPMI, activity engagement is interwoven with issues of action, power, vulnerability and protection. These factors play a large part in the ability to manage problems that arise during the course of everyday living. In my view, occupational scientists have an opportunity to meet the needs of this population and address a pressing public health concern. Further, research into the comparative effectiveness of treatments for those with SPMI is in demand due to recent healthcare policy reform (e.g., Health Care and Education Reconciliation Act of 2010, Pub.L. 111-152). This study also has the potential to contribute to a previously unexplored area of occupational therapy practice. The American Occupational Therapy Association’s [AOTA] Centennial Vision proposes that by the year 2017 “occupational therapy is a powerful, widely recognized, science-driven, and evidence-based profession with a globally connected and diverse workforce meeting society's occupational needs” (American Occupational Therapy Association, n. d., ¶1). To accomplish the vision, the board established priorities for fiscal year 2010 which included, but were not limited to, aligning the organization with federal funding sources and promoting emerging areas of occupational therapy practice (American Occupational Therapy Association, 2009). Weight management for those with SPMI is recognized as an area in need of urgent 181 attention by funding sources and may provide a new arena for occupational therapy interventions. While the AOTA released a statement and position paper on the need for occupational therapists to take a role in addressing obesity issues with their clients (Blanchard, 2006; Clark, Reingold, & Salles-Jordan, 2007), weight management research and interventions have yet to gain widespread attention in occupational therapy. In order for people with SPMI to truly flourish, attention must be paid to the integration of their physical and mental health needs in the context of everyday living. Development of a Lifestyle Redesign® program focused on weight management for people with SPMI is imperative and would be welcomed by stakeholders (e.g., participants, agency staff). A multifaceted intervention that considers the socioeconomic and sociopolitical concerns of this population within the context of daily living is key to removing barriers to health and wellness. Support for such a program is evidenced by federal initiatives such as SAMHSA’s 10 x 10 Wellness Campaign, which promotes “the importance of addressing all parts of a person’s life in hopes of increasing life expectancy for persons with mental health problems by 10 years over the next 10 years” (Substance Abuse and Mental Health Services Administration, 2010, ¶1). Given the results of my study, I recommend the following guidelines for a Lifestyle Redesign® weight management intervention for people with SPMI. First, eliminating barriers to wellness for those with SPMI must begin at the level of policy and system intervention. We must advocate for integrated services that address both the mental and physical health needs of this population and reduce barriers to access. Without such policy and system intervention, significant contextual barriers to 182 success will remain and these will reduce the effectiveness of weight management efforts. Examples of advocacy efforts might include partnering with organizations such as the National Coalition for Mental Health Recovery and the National Alliance for the Mentally Ill to advance lobbying efforts and developing relationships with community leaders and community mental health agencies to design wellness initiatives. Further, emerging agencies based on the new healthcare reform legislation may provide opportunities for collaboration. Second, given that the point of healthcare access for these participants resides within the community mental health system, I contend that it is essential to link intervention with typical service providers and programs. Agency staff members and external professional supports (e.g., local primary care physicians, specialists, and healthcare institution staff) must be assisted to develop a complex understanding of situational barriers to weight management and be provided with specialized knowledge of methods to support this population. Exposing the contextual obstructions to weight management has the potential to reduce stereotypical views and enhance service provision. Third, I believe a community education facet coupled with agency and policy- level advocacy could provide a substantial shift in the systemic barriers to weight management and have vast implications for intervention. Opportunities and strategies for implementing change can be developed by educating community stakeholders who provide regular support to this population (e.g., food banks, subsidized housing complexes, homeless shelters, residential programs) about the contextual barriers to 183 weight management. Further, education about the importance of activity and low-to-no cost access should be addressed with various settings that provide healthy pleasurable activities in the community (e.g., various types of exercise facilities, museums, movie theaters, restaurants, sporting events, etc.). So doing would enhance the opportunities for equal participation, developing social relationships, and relieving stress in a healthy manner for those with SPMI. Topics such as providing scholarships, stipends, or “free access” days and times at these facilities could be negotiated as a means to enhance quality of life and community integration. Fourth, while manualization of an intervention is outside of the scope of this study, some reasonable conclusions can be drawn about the general approach to a program. As I conceptualize such an intervention, and in line with the Lifestyle Redesign® programs already established at the USC Division of Occupational Science and Occupational Therapy, a combination of group and individual intervention is needed. The previously identified domains and their respective subdomains outlined in this dissertation can be used as a guide to manual development; however, specific topics will need further elaboration. The milieu in which people with SPMI interact supports a peer leadership component in addition to professional guidance by a healthcare provider; therefore, I suggest developing partnerships with potential co-facilitators who would be trained and work in tandem with occupational therapists to lead group intervention and provide individual support. An additional enhancement to the intervention would be to involve mental health service providers in training, as one can reasonably hypothesize that threats to sustaining a weight management regime would be an ongoing concern due 184 to shifting life circumstances (e.g., medication changes, housing issues, effects of aging, etc.). A combination of group and individual intervention would provide for building supportive relationships and learning in a collaborative environment, while receiving individualized attention to specific needs outside of the group setting. The individualized portion of the intervention should focus on additional skill development in the home and community. A final area of consideration is the population for whom this type of program should be developed. When designing an intervention, special care must be given to whether or not a program should focus on prevention of weight gain in those who are average weight, weight reduction in those who are overweight, weight gain in those who are underweight, or a combination of these. I mention this because weight management issues pose serious health risks for people with SPMI and development of weight management problems is theoretically open to anyone. As evidenced in Chapter 4, participants’ interest in weight management was due to one or more of the following: (a) health concerns experienced or anticipated, (b) feeling uncomfortable with appearance, and (c) being unable to engage in desired activities. Although I appreciate that a problem must often occur to drive the desire for change, this circumstance does not necessarily have to be the case. Educating those with SPMI about the insidious nature of weight problems and the deleterious effects of comorbidities on health, quality of life and lifespan may raise awareness and increase interest in this area prior to the emergence of major weight-related issues. Given the aforementioned focus on wellness for all people with SPMI and the urgent need to address early mortality rates (e.g., SAMHSA’s 10 x 10 185 Wellness Campaign), I recommend developing a comprehensive intervention that is open to a broad range of participants regardless of current weight status and tailoring the intervention to meet particular subpopulation needs. Prior to executing a randomized controlled trial to test the efficacy and effectiveness of the intervention, pilot testing of heterogeneous and homogenous groups would be needed to refine intervention strategies and determine advantages and complications that might arise. Summary of this Research In this study, I have discerned complex interrelated factors that contribute to weight management issues in the lives of particular individuals with SPMI. By qualitatively exploring their experiences using disability studies and occupational science frameworks, I have provided a conceptual foundation for the future development of a Lifestyle Redesign® intervention to address weight management in this population. A key finding of my study was the significance of addressing sociopolitical and socioeconomic realms of focus in addition to issues of personal agency and power when providing support for lifestyle change in this population. 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Davis. 201 Appendix A Weight Management Research Project RESEARCH PARTICIPANTS WANTED I am a doctoral student at the University of Southern California and I am interested in how some individuals with mental illness deal with issues of weight management in daily life. If you are over the age of 18 and you… • Are interested in weight management • Receive services at Portals/Pacific Clinics locations • Speak English ! I WANT TO HEAR FROM YOU! I am interested in learning about… • your experiences with weight gain and loss • the challenges you face • the strategies you use to deal with weight issues • what you feel would make your life easier in this area If you are willing to participate in a discussion group and share some of your experiences with me, or want more information, please Contact Abbey Marterella at 734-330-1771 Discussion groups will last approximately 90 minutes You will be compensated for your participation All information will be kept confidential Study # HS-09-00031 202 Appendix B Informed Consent TITLE: Exploring Weight Management in Adults with Mental Illness from the Participants' Perspective PRINCIPAL INVESTIGATOR: Abbey Marterella, MS, OTR/L DEPARTMENT: Division of Occupational Science and Occupational Therapy at the School of Dentistry 24-HOUR TELEPHONE NUMBER: 734-330-1771 We invite you to take part in a research study. Please take as much time as you need to read the consent form. You may also decide to discuss it with your family, friends, or your doctor. You may find some of the language difficult to understand. If so, please ask questions. If you decide to participate, you will be asked to sign this form. WHY IS THIS STUDY BEING DONE? This study is about weight management issues among adults with mental illness. The purpose of this study is to learn about everyday experiences with weight management from the participant’s perspective. Topics include challenges you face in everyday life and your views on health and quality of life. You are invited as a possible participant because you are over 18 years old, speak fluent English, receive services at Portals/Pacific Clinics, and are interested in weight issues. A maximum of 40 participants will take part in this study. WHAT IS INVOLVED IN THE STUDY? If you decide to take part in this study, you will be asked to engage in a focus group interview. This group interview will include up to 5 other participants and will last about 90 minutes. The focus group will take place at a time and place that is convenient to you. After the focus group, you may be contacted to confirm something that you said. This follow-up contact may or may not happen. The interview questions will focus on your everyday experiences with weight management. Each group interview will be recorded. 203 In addition to the focus group, you may be asked to participate in an individual interview and spend time with the researcher doing some of your regular activities. If you agree to take part in this portion of the study, the interview and activity visit will be scheduled at a time and place chosen by you. The interview will last about 2 hours and will be recorded. During the interview, you will be asked questions about your background, your daily life, and your experiences with weight management. Your one-on-one activity visit will last about 2 hours, but may last longer with your consent. Activities will be chosen by you and should be a part of your daily routine. Examples may include grocery shopping, taking a walk, or eating a meal. With your consent, the activity visit may be recorded. The purpose of the individual interview and activity visit is to gain a deeper understanding of how you manage your weight in daily life. WHAT ARE THE POSSIBLE RISKS AND DISCOMFORTS? Possible risks and discomforts you could experience include fatigue and/or stress during an interview or activity visit. If you reveal information about harming yourself, your clinician will be notified and you may be subject to involuntary medical care. You can refuse to answer any questions and stop the interview or activity visit at any time with no penalty to you. WHAT ARE THE POSSIBLE BENEFITS OF TAKING PART IN THIS STUDY? You may not receive any benefits from taking part in this study. However, contributing to what is known about the day-to-day experiences and needs of persons with mental illness and weight management issues may be perceived as a benefit. WHAT OTHER OPTIONS ARE THERE? An alternative would be to not take part in this study. WILL YOUR INFORMATION BE KEPT PRIVATE? The investigator and the Institutional Review Board (IRB) will keep your records for this study private as far as the law allows. The IRB is a research review board that is made up of professionals and community members who review and monitor research studies to protect the rights and welfare of research participants. The information from this study may be published in scientific journals or presented at scientific meetings. Your identity will be kept strictly private. Access to data will be restricted to the members of the research team. You will only be identified by name on the signed consent form, which will be kept in a locked cabinet in the investigator’s office. Your name will be replaced by a code on all study materials. Audiotapes will be destroyed when the study is completed. If at any time during or after the study you wish to withdraw your consent, you may do so with the understanding that this information will be destroyed. 204 WHAT HAPPENS IF YOU GET INJURED OR NEED EMERGENCY CARE? If you get injured as a direct result of these research procedures, you will be given the medical care you need. You must pay for the care. You will not receive any compensation if you get hurt or sick. WHAT ARE YOUR RIGHTS AS A PARTICIPANT, AND WHAT WILL HAPPEN IF YOU DECIDE NOT TO PARTICIPATE? Your participation in this study is entirely your choice. If you decide to take part in this study, you are free to withdraw your consent and stop participation at any time without consequence to you. Your decision whether or not to take part will not affect your current or future care at this institution. WHOM DO YOU CALL IF YOU HAVE QUESTIONS OR CONCERNS? You may contact Abbey Marterella at 734-330-1771 or graduate advisor Jeanne Jackson at 323-442-2861 with any questions, concerns or complaints about the research or your participation in this study. Further, the Los Angeles Department of Mental Health Human Subjects Research Committee may be contacted at (213) 738-4611 about any problem arising from participation in this study If you unable to reach the investigator or graduate advisor, or if you want to talk to someone independent of the research team, please contact the Institutional Review Board (IRB) Office at 323-223-2340 between the hours of 8:00 AM and 4:00 PM. (Fax: 323- 224-8389 or email at irb@usc.edu). If you have any questions about your rights as a research participant, please also contact the Institutional Review Board Office at the numbers above or write to the Institutional Review Board at the LAC+USC Medical Center, IRD Building, 2020 Zonal Avenue, Room 425, Los Angeles, CA 90033. You will get a copy of this consent form. AGREEMENT: I have read, or had read to me, all of the above information about this research project. I have been given a chance to ask questions and all of my questions were answered to my satisfaction. I understand the nature and purpose of this research and voluntarily agree to sign this form in order to take part in this study. I will receive a signed copy of this consent form. Name of Participant Signature Date Signed Name of Witness Signature Date Signed 205 I have personally explained the research to the research participant and answered all questions. I believe that he/she understands the information described in this informed consent and freely consents to participate. Name of Person Signature Date Signed Obtaining Informed (must be the Consent same date as participant) 206 Appendix C Capacity to Consent Evaluation Form !"#$% & '()$#*+"#(%$",-) $ (not distributed to subject) EVALUATION TO SIGN A CONSENT FORM FOR RESEARCH To Be Conducted By Study Staff Performing Consent for Each Client Consented into the Study Participant Data: Name: ________________________________________________ Date of Birth: __________________________________________ Directions: Make a subjective judgment regarding item 1 below. Ask the client questions 2 through 5. You may select the appropriate language to use in formulating the questions in order to assist the subject's understanding. Items 1. Is the individual alert and able to communicate with the examiner? ____ Yes ____ No 2. Ask the individual to name at least two (2) potential risks that may occur as a result of participating in the research. 3. Ask the individual to name at least two things that will be expected of (him/her) in terms of patient cooperation during the study. 4. Ask the individual to explain what (he/she) would do if (he/she) decides that they no longer wish to participate in the study. 207 5. Ask the individual to explain what (he/she) would do if (he/she) is experiencing distress or discomfort. I hereby certify that the above person is alert, able to communicate and able to give acceptable answers to items 2, 3, 4 and 5 above. _____________________________________________________________ Investigator Date/Time 208 Appendix D Focus Group Script Weight Management and Mental Illness INTRODUCTION AND GROUND RULES Hello. My name is Abbey Marterella. Thank you for agreeing to participate in this discussion today. I am a doctoral candidate at the USC Division of Occupational Science and Occupational Therapy and as part of the requirements for my degree I am conducting focus groups, interviews, and spending time with people receiving services from Portals/Pacific Clinics to learn about weight management issues in the lives of people who have mental illness. You have all been invited to consult with me on this research, so that I may better understand how weight issues impact your life, the challenges you face, the strategies you use or have used to overcome weight problems, and how you feel about services available to you in this area. Your stories and opinions, both positive and negative, are important so that I can learn about experiences with weight management from your perspective. This information may be used to help develop a program to help people like you address weight problems. I am committed to maintaining your confidentiality, and as members of this group, in order to respect your privacy, I ask that the things that you hear in this group remain confidential. Your participation in this discussion is strictly voluntary and will in no way affect the care you receive here or your residence status. All information you provide is confidential and will be used to complete my doctoral research. Your name will not be attached to any information reported in the course of this study. Before we start, I would like to establish some ground rules: There are no right or wrong answers. I am here to learn from you. Your personal thoughts and experiences are important in helping me better understand the issues being discussed today. Everyone’s ideas count. It is all right to have a different take on things Please talk to others in the room, not just to me. I ask that only one person speak at a time and that no side conversations with your neighbors take place during the discussion. People express things differently although they may be talking about the same thing. Even if you think that someone else has already said something that is in-line with your own experiences or thoughts, I would still like to hear what you have to say. 209 Because there will be a lot of information that I would will not be able to remember or write down, I would like to tape record this discussion. By tape recording this discussion, I also have the added benefit of making sure that my notes do not leave out important information you have expressed or change the essence of your view points and experiences. To ensure confidentiality, you should avoid using your own or other’s names. You have the option of using either only your first name or a made-up name for the purposes of the focus group today. After the focus group is finished, I will replace any mention of your name by a participant number in any transcripts or other written documents produced. The discussion will take about one to one and a half hours. Again, please know that there are no right or wrong answers to any of these questions. In some instances, I may ask follow-up questions or ask for examples so that I can better understand your responses. I really want you to speak from your own experiences. I would like you to be as honest as you are comfortable being so that I can get the best information possible. There will be time after the discussion has finished to address any questions you may have. Before, we start, does anyone have any questions about what is going to be happening here today? Are you all comfortable with what I have talked about so far? Do I have your permission to tape record this discussion? (TURN ON RECORDER) RAPPORT BUILDING Present a non-threatening, icebreaking question (e.g., what is your favorite activity and why?). Ask participants to begin by stating their first names or self-selected aliases. FOCUS GROUP QUESTIONS When did you first become interested in weight management and why? Probe for personal stories of weight gain/loss over the lifespan What do you feel gets (or got) in the way of managing your weight? Probe for daily activities, habits, routines, environmental and social factors How has (or did) your life change as a result of weight gain? Probe for types of activities that are challenging, social issues, strategies employed in daily routine to make life easier, view of self 210 How would your life be different (or is your life different) as a result of weight loss? Probe for future outlook, current concerns, what needs to happen to have desired future WRAP UP Is there anything we have not talked about that you think I should know about your thoughts on weight management? Thank you for your thoughtful responses. Do you have any questions? This concludes the discussion. Please make sure you stay to receive your stipend. Again, thank you for taking time to participate in this study. $ 211 Appendix E Individual Interview Script Hello. My name is Abbey Marterella. Thank you for agreeing to participate in this interview today. I am interested in hearing more about your experiences with weight management in daily life. Your participation in this interview is strictly voluntary and will in no way affect your services at Portals/Pacific Clinics. All information you share with me will be kept confidential and will NOT have your name attached to it. There are no right or wrong answers. I am here to learn from you. Your personal thoughts and experiences are important in helping me better understand your experiences. Because there will be a lot of information, I would like to tape record this interview. By tape recording this interview, I also have the added benefit of making sure my notes don’t leave out important information you have expressed or change the essence of your view points and experiences. Our interview will take approximately two hours. Again, please know that there are no right or wrong answers to any of the questions I ask. In some instances, I may ask follow-up questions or ask for examples so that I can better understand your responses. As a thank you for your time, you will receive ten dollars in cash for participating in the interview. You will receive this whether or not you complete the interview. I remind you that this is completely voluntary. If there are any questions you don’t wish to answer you do not have to answer them. In addition, you may stop the interview at any time. If you have questions at any time during the interview, please feel free to ask them. Do you have any questions before we begin? Do I have your permission to tape record this interview? Guiding Questions Demographics Age Gender Mental health diagnosis Education level General income level/type of financial support and benefits 212 Daily Life Experiences I am interested in learning more about your experiences with weight management and how this fits into your daily life. Please tell me about what an average day is like for you Possible probes if needed: • typical day, atypical • variation from day-to-day • types of activities • daily routine • problems encountered, strategies used • social/environmental issues Health & Quality of Life How has your health been affected by weight issues (physical/mental)? Tell me about things that you feel are missing from your life? How do you view your future? What are your biggest concerns? What do you feel is needed to make your life easier? Conclusion Is there anything else you think I should know about your experiences with weight management? Thank you for participating in this interview.
Abstract (if available)
Abstract
Weight management problems pose a grave threat to the health and well-being of adults with serious mental illness. In fact, overweight and obesity rates for this population are estimated to be up to twice that of the general populace. Despite the urgent need to address this issue, few studies have been undertaken to develop effective interventions tailored to the specific life circumstances implicated in the poor weight management of this group.
Linked assets
University of Southern California Dissertations and Theses
Asset Metadata
Creator
Marterella, Abbey Lynn
(author)
Core Title
One size fits none: theorizing weight management in the everyday lives of adults with serious mental illness
School
School of Dentistry
Degree
Doctor of Philosophy
Degree Program
Occupational Science
Publication Date
08/05/2012
Defense Date
05/10/2010
Publisher
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
community mental health,lifestyle redesign intervention,mental illness,OAI-PMH Harvest,qualitative research,weight management
Place Name
USA
(countries)
Language
English
Contributor
Electronically uploaded by the author
(provenance)
Advisor
Jackson, Jeanne M. (
committee chair
), Brekke, John (
committee member
), Clark, Florence A. (
committee member
), Neville-Jan, Ann (
committee member
)
Creator Email
abbey.marterella@gmail.com,marterel@usc.edu
Permanent Link (DOI)
https://doi.org/10.25549/usctheses-m3302
Unique identifier
UC1327230
Identifier
etd-Marterella-3498 (filename),usctheses-m40 (legacy collection record id),usctheses-c127-376631 (legacy record id),usctheses-m3302 (legacy record id)
Legacy Identifier
etd-Marterella-3498.pdf
Dmrecord
376631
Document Type
Dissertation
Rights
Marterella, Abbey Lynn
Type
texts
Source
University of Southern California
(contributing entity),
University of Southern California Dissertations and Theses
(collection)
Repository Name
Libraries, University of Southern California
Repository Location
Los Angeles, California
Repository Email
cisadmin@lib.usc.edu
Tags
community mental health
lifestyle redesign intervention
mental illness
qualitative research
weight management