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Exploring the effects of mindfulness on psychosocial factors for patients receiving hand therapy

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Content Exploring the Effects of Mindfulness on Psychosocial Factors for Patients Receiving Hand Therapy DISSERTATION Presented to the Faculty of the USC Graduate School in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in Occupational Science By Mark E. Hardison, M.S., OTR/L USC Mrs. T.H. Chan Division of Occupational Science and Occupational Therapy August, 2019 Dissertation Committee: Shawn C. Roll, Advisor Mary Lawlor Jennifer Unger 1 Copyright by Mark E. Hardison 2019 2 Abstract Mindfulness meditation is the practice of targeted paying attention to thoughts, emotions, and body states. This is done with an attitude of openness, curiosity, and non-judgment. While mindfulness meditation originates from Buddhist practices, it has been adapted into a mind-body intervention in western healthcare. Over the past 30 years a large base of literature including multiple randomized controlled trials and systematic reviews have provided evidence for the effect of mindfulness meditation to improve chronic pain, anxiety, and stress. A subsequent theoretical discussion has developed concerning how mindfulness relates to clinical practice in occupational therapy. Yet, clinical studies translating mindfulness meditation interventions to occupational therapy are all but nonexistent. Such translational work is vital because existing manualized mindfulness meditation interventions are very time-intensive and do not fit within the standard patient encounters occupational therapists provide. It is unclear if a more scaled- back implementation of mindfulness meditation is acceptable to occupational therapy patients, feasible within the setting, and still yields the same benefits as more intensive interventions. This work takes the first step at establishing the utility of mindfulness meditation as an intervention in occupational therapy. Because occupational therapy practice areas are quite broad, we narrowed our focus by using outpatient hand therapy as the initial case. First, we implemented a cross-sectional needs assessment for 120 hand therapy patients asking about interest in receiving mindfulness meditation as a part of care and also assessed a battery of psychosocial outcomes. Using a forward stepwise logistic regression predicting patient interest, we found that women and individuals with higher self-reported disability were more interested in mindfulness meditation. Also, that patients’ trait mindfulness was correlated negatively with psychosocial symptoms such as anxiety and depression. 3 Secondly, we implemented an explanatory QUANqual, mixed-methods pilot study providing a group of 20 hand therapy patients with weekly mindfulness meditations for four weeks. The primary goal of this pilot was to assess for feasibility of implementing a mindfulness-based intervention in the setting of hand therapy. We tracked patients’ pain and anxiety before and after the meditations. Also, we tracked patients’ engagement and adherence to treatment across the 4-week period. Each meditation demonstrated a statistically significant reduction in pain and anxiety with the strongest effect size resulting from using a 19-minute general mindfulness instructional audio recording in the first week. While repeated measures analysis showed time-based changes in pain catastrophizing and self-efficacy across 4 weeks. Individual semi-structured interviews were conducted with the 17 participants who stayed in the study past the 4-week intervention. Audio recordings of these interviews were transcribed verbatim. Using an iterative process of thematic coding we elucidated 5 themes surrounding participant experiences of recovery and 5 themes surrounding the experience of the mindfulness intervention. Emerging from the data, participants commonly navigated initial denial and despair after their injury into a process of hope and recovery. Participants noted the mindfulness meditations were useful in facilitating a positive mindset for therapeutic encounters with their hand therapist by eliciting a state of calm relaxation. Mindfulness-based interventions in hand therapy have proven to be acceptable to the large majority of patients while being feasible using a more scaled-back approach that fits within the setting. Also, there is preliminary evidence that mindfulness meditations reduce hand therapy patient anxiety before clinical visits and facilitates a positive mindset for recovery. Future development is warranted for a tailored mindfulness intervention in hand therapy leading to the implementation of an efficacy trial. 4 Dedications for Erin “Most like an arch—an entrance which upholds and shores the stone-crush up the air like lace. Mass made idea, and idea held in place. A lock in time.” -John Ciardi for Clara “Oh, I’ve had my moments, and if I had to do it over again, I’d have more of them. In fact, I’d try to have nothing else. Just moments, one after another.” -Nadine Stair for Eve “I hear the drizzle of the rain, Like a memory it falls, Soft and warm continuing, Tapping on my roof and walls.” -Paul Simon 5 Acknowledgments My mentor, Shawn Roll: Your vision, enthusiasm, and dedication as a mentor has been invaluable. I have lost track of the countless discussions we have had that shaped me as a scholar. You always helped me see the big picture while guiding me to be practical. The Educators at the University of Southern California: Mary Lawlor, Jennifer Unger, Cheryl Vigen, Gelya Frank, Beth Pyatak, Richard Watanabe, and Ben Henwood. It has been an amazing journey of learning the past 5 years. I find myself using what I learned in each of your classes throughout all of my work. The Hand Therapy team at St. Jude Centers for Rehabilitation and Wellness: Mary Long, Lisa Scholz, Dana Sakoda, Judi Shiba, Tracy Okubo, Geri Chevalier, and Marysol Cacciata. Data was collected for chapters 2, 3, and 4 of this dissertation in no small part through your hard work. Without you and your patients, there would have been no dissertation. You have all been so kind, patient, and enthusiastic with helping to make the research happen. The Hand Therapy team at Keck Hospital: Janice Rocker, Aimee Aguillon, and Katie Jordan. Data was collected at Keck for chapter 2 of this dissertation. Thanks to you all for many years of collaboration, encouragement, and guidance. Your perspective on hand therapy is inspiring and you’ve taught me what it means to be an excellent OT. The student volunteers from the University of Southern California: Tabitha Lin, Miel Krauss, and Nicole Yoon. It has been a joy working with each of you and learning together about research. Thank you so much for your hard work and support. The California Foundation for Occupational Therapy funded this work in part with a 2017 Research Grant. 6 Table of Contents i. Abstract ............................................................................................................................... 2 ii. Dedications ................................................................................................................................ 4 iii. Acknowledgments .................................................................................................................... 5 iv. List of Tables .......................................................................................................................... 10 v. List of Figures .......................................................................................................................... 11 vi. List of Abbreviations .............................................................................................................. 12 CHAPTER 1: General Introduction ............................................................................................. 14 1.1 Background and Significance .................................................................................... 13 1.1.1. Mindfulness Based Interventions in Healthcare ........................................ 15 1.1.2. The Relationship between MSDs and Psychosocial Outcomes ................. 20 1.1.3. Patient Adherence to Medical Interventions .............................................. 23 1.1.4. Engagement in Rehabilitation .................................................................... 28 1.1.5. Summary .................................................................................................... 31 1.2. Dissertation Overview .............................................................................................. 33 1.2.1. Purpose ....................................................................................................... 33 1.2.2. Overall Design and Specific Aims ............................................................. 34 1.3. References ................................................................................................................. 38 CHAPTER 2: A Needs Assessment for Mindfulness-Based Interventions in Upper Extremity Rehabilitation .............................................................................................................................. 49 2.1. Introduction .............................................................................................................. 50 2.2. Methods..................................................................................................................... 52 2.2.1. Study Design .............................................................................................. 52 7 2.2.2. Subjects and Recruitment .......................................................................... 52 2.2.3. Survey Pre-Test and Validation ................................................................. 53 2.2.4. Measures .................................................................................................... 54 2.2.5. Analysis...................................................................................................... 56 2.3. Results ...................................................................................................................... 57 2.4. Discussion ................................................................................................................ 61 2.5. Conclusion ............................................................................................................... 64 2.6. References ................................................................................................................ 65 CHAPTER 3: Piloting the Effects of Mindfulness on Psychosocial Outcomes and Treatment Uptake in Hand Therapy ............................................................................................................. 69 3.1. Introduction .............................................................................................................. 70 3.2. Methods .................................................................................................................... 72 3.2.1. Participant Recruitment and Sampling ..................................................... 73 3.2.2. Intervention ............................................................................................... 74 3.2.3. Data Collection and Measures ................................................................... 76 3.2.4. Analysis...................................................................................................... 78 3.3. Results ...................................................................................................................... 79 3.4. Discussion ................................................................................................................ 83 3.5. Conclusion ............................................................................................................... 85 3.6. References ................................................................................................................ 87 CHAPTER 4: Perspectives on Recovery and Pain Management Following a Mindfulness Meditation Intervention: A Qualitative Pilot Study of Individuals with Acute Upper Extremity Injuries……….. ........................................................................................................................... 92 8 4.1. Introduction .............................................................................................................. 93 4.2. Methods .................................................................................................................... 94 4.2.1. Participant Recruitment and Sampling ...................................................... 95 4.2.2. Intervention ................................................................................................ 95 4.2.3. Data Collection and Analysis..................................................................... 96 4.3. Results ...................................................................................................................... 97 4.3.1. The Process of Injury Leading to Recovery .............................................. 99 4.3.2 Experiences and Preferences Concerning the Mindfulness Meditations .. 104 4.4. Discussion .............................................................................................................. 107 4.5. References .............................................................................................................. 110 CHAPTER 5: Discussion and Synthesis ................................................................................... 113 5.1. Summary of Key Findings ..................................................................................... 114 5.1.1. Conclusions from Chapter 2: The Cross-Sectional Needs Assessment ... 115 5.1.2. Conclusions from Chapter 3: Quantitative Results of the Mixed-Methods Pilot Study .......................................................................................................... 115 5.1.3. Conclusions from Chapter 4: Qualitative Results of the Mixed-Methods Pilot Study .......................................................................................................... 116 5.2. Synthesis of Knowledge Gained Across Studies .................................................... 118 5.2.1. Advancing the Discussion in Occupational Science about Adherence and Engagement in Healthcare ................................................................................. 118 5.2.2. The State of the Science Backing Mindfulness Interventions in Occupational Therapy ........................................................................................ 120 9 5.3. Future Directions for Translating Mindfulness-Based Interventions into Hand Therapy .......................................................................................................................... 121 5.4. References .............................................................................................................. 123 Appendix A. Outcome Measure Explanation and Validity ....................................................... 124 Appendix B. Participant Surveys ............................................................................................... 128 Appendix B.1. Cross-sectional Web-based Survey Implemented Via REDCap ........... 128 Appendix B.2. Paper Survey for Experimental Study ................................................... 146 Appendix C. Excerpts of Mindfulness Meditations ................................................................... 151 Appendix C.1. General Mindfulness Instructions.......................................................... 151 Appendix C.2. Body Scan .............................................................................................. 151 Appendix C.3. Meditation for Working with Difficulties ............................................. 152 Appendix C.4. Friendly Kindness .................................................................................. 153 Appendix D. Semi-Structured Interview Guide ......................................................................... 154 10 List of Tables 2.1. Demographic and Descriptive Data ...................................................................................... 58 2.2. Unadjusted β of All Possible Predictors for Interest in Mindfulness ................................... 60 2.3. Final Regression of Model Predicting Hand Therapy Patients Interest in Mindfulness-Based Interventions as a Component of Care ......................................................................................... 60 2.4. Spearman’s Correlations of Psychosocial Sequelae of Upper Extremity Injury .................. 61 3.1. Mindfulness-Based Intervention Description by Week ........................................................ 76 3.2. Demographic and Descriptive Data ...................................................................................... 80 3.3 Paired T-Test for Anxiety and Pain by Week ........................................................................ 81 4.1. Demographic and Descriptive Data ...................................................................................... 98 11 List of Figures 1.1. Results of Mind-Body Interventions in Hand Therapy......................................................... 19 1.2. Logic Model for Integrating Mindfulness Interventions in Hand Therapy for Adults with Traumatic Injury Dedication ........................................................................................................ 33 1.3. Visualization of Overall Design and Analyses ..................................................................... 35 3.1. Pain and Anxiety Pre and Post Mindfulness Meditation ...................................................... 81 3.2. Marginal Means of Uptake Variables Across 4 Weeks ....................................................... 82 4.1. Overview of Recovery Experiences Across Time ................................................................ 99 12 List of Abbreviations ANOVA analysis of variance CES-D Center for Epidemiologic Studies depression scale CRW St. Jude Centers for Rehabilitation and Wellness CVA cerebrovascular accident FFMQ five-factor mindfulness questionnaire IMI intrinsic motivation inventory MBI mindfulness-based intervention MBSR mindfulness-based stress reduction MID minimally important difference MSD musculoskeletal disorder OT occupational therapy PCS pain catastrophizing scale PS-EQ pain self-efficacy questionnaire REDCap research electronic data capture SDT self-determination theory SIRAS sport injury rehabilitation adherence scale SPSS statistical package for social sciences STAI state-trait anxiety inventory ULFI upper limb functional index USD United States dollars VAS visual analog scale 13 CHAPTER 1 General Introduction 14 1.1. Background and Significance Musculoskeletal disorders (MSDs) are a pervasive and costly problem affecting approximately 1 in 3 individuals in the United States (US Bone and Joint, 2014). Symptomology for MSDs is complex, disrupting general health, general vitality, and specific loss of functioning or bodily pain (Roux, et al. 2005). These limitations often interfere with occupational functioning. In fact, MSDs are the leading contributor to lost days at work in the United States, causing approximately 1 in 8 adults to report absences from work over a 1-year period (US Bone and Joint, 2014). Moreover, MSDs result in a multitude of symptoms that touch many areas of a patient’s life. For example, loss of physical functioning due to MSDs not only disrupts the affected tissues, but this may lead to disruption for an individuals’ roles at work, occupational functioning in self-care, caregiving, and leisure activities. Essentially, the human experience of injury is multifaceted, and reaches beyond just its physical presentation. Given the impact and complexity of MSDs, successful treatment may require comprehensive interventions. In order to be successful and fully engage patients, the therapeutic process must involve all types of interventions, from preparatory to occupation-based (Roll, 2017). Occupational therapists are uniquely poised to provide these comprehensive interventions and address the complexity of MSDs. The roots of the profession lie in implementing holistic interventions that address the physical, psychological, social, and spiritual manifestations of an injury (AOTA, 2014). Mind-body interventions are one tool that therapists may use to address the combined physical and psychosocial needs of a patient with an MSD. Specifically, mindfulness-based interventions (MBIs) are a promising and increasingly evidence-supported tool for healthcare practitioners (Williams & Kabat-Zinn, 2011). However, the link between MBIs and occupational therapy is not well established, especially in the context of intervention 15 for MSDs. Therefore, in this introduction I will explore how mindfulness-based interventions have been used in healthcare, identify constructs that MBIs may act upon within the context of one area of practice for occupational therapy (i.e., Hand Therapy), and illuminate a course of research in this area that builds on existing literature. 1.1.1. Mindfulness-Based Interventions in Healthcare Mindfulness originates from Buddhist teachings about the nature of human experiences and the mind - especially to do with experiences of suffering. The word Mindfulness is a translation rendered from Buddhist texts originally written in Pali, an ancient Indian language. The definition of mindfulness from these texts is a remembrance of teachings or a metacognitive mind state (Bodhi, 2011). This idea is developed by the Sallatha Sutta, also known as the The Arrow. “When touched with a feeling of pain, the uninstructed run-of-the-mill person sorrows, grieves, & laments, beats his breast, becomes distraught. So he feels two pains, physical & mental. Just as if they were to shoot a man with an arrow and, right afterward, were to shoot him with another one.” As such, mindfulness philosophy posits that suffering is an additional psychological layer on top of the discomfort felt from physical pain. The practice of mindfulness meditation is the intentional focusing of awareness on the mind and body in a way that is non-judgmental, open, and curious. This practice is done in the service of insight for mind and body states previously outside of conscious awareness or to safely explore challenging mind and body states that might otherwise go unaddressed (Kabat- Zinn, 2013). The insight and awareness gained allows for a separation of personal identity from 16 bodily or emotional experiences. Thereby the practice of mindfulness meditation allows for learning to separate painful sensations from the suffering that comes just after or layered on top. While originating as a component of Buddhism, mindfulness meditation has been secularized in western medicine and used with patients in an increasing number of settings. Specifically, mindfulness meditation was pioneered as a medical intervention called Mindfulness-Based Stress Reduction (MBSR) by Jon Kabat-Zinn (1982). MBSR was implemented initially as an intervention for chronic pain, often accompanied by psychological sequelae, in patients who had not experienced relief by other more mainstream interventions such as physical therapy or pain medication. Since the inception of MBSR, mindfulness meditation research and medical application has grown exponentially. Current evidence for mindfulness meditation interventions in healthcare is quite robust in successfully addressing chronic pain (Reiner, Tibi, & Lipsitz, 2013), anxiety (Shennan, Payne, & Fenlon, 2011), and improving well-being (Chiesa & Serretti, 2009). Although MSBR has been shown to be beneficial, there are multiple limitations with integrating this standardized intervention into a hand therapy setting. Firstly, MBSR requires a large time commitment from patients and providers that is not feasible in many medical settings. It would be unreasonable to ask patients in hand therapy to attend 2 extra hours of a MBSR group every week and practice multiple hours of meditation on top of their home exercise plan. Secondly, MBSR requires intensive, specialized training of the provider which can be costly and time intensive. MBSR providers must become expert mindfulness practitioners themselves, which may be outside of many hand therapists’ area of interest or expertise. Finally, the goal of patients becoming mindfulness practitioners in their daily life may not be a key target for individuals with acute MSDs. Learning to be mindful as a core trait through MBSR has been 17 shown to produce positive outcomes for health and wellbeing. However, the goal of fundamentally changing trait mindfulness for patients is much larger than the purpose of hand therapy, and it is unclear which populations would benefit or be most interested. As an alternative to a complex MBSR program, MBIs incorporate targeted concepts of MBSR within standard practice with a goal of enhancing the patient experience within the context of therapy. This is in contrast to MBSRs which attempt to enhance the patient’s experience more generally. As such, MBIs in healthcare often tend to be less-intensive and targeted specifically to a patient’s condition and needs. Common MBIs in healthcare include teaching mindfulness principals, encouraging acceptance of the body-state, guiding patients in mindful meditation or mindful movement, and intentionally reducing intrusive thoughts that might be anxiety or stress-provoking. These components are theorized to reduce the short and long term stress response, and improve adaptation to illness and injury despite residual pain and discomfort. Recent research has investigated how MBIs might be applied to physical rehabilitation. Specifically, MBIs have been implemented in a rehabilitation setting to address musculoskeletal and pain disorders, neurocognitive disorders, urinary incontinence, and vestibular dysfunction (Hardison & Roll, 2016). However, this literature base is still very small (i.e., a total of 16 studies), and generally consists of level III evidence which demonstrates mixed results. The strongest findings are for MBIs being used for musculoskeletal and pain disorders, but there are no studies which apply a MBI within hand therapy. Despite the current dearth of research, there is preliminary evidence that MBIs are acceptable to rehabilitation patients and concordant with the scope of practice for occupational and physical therapy (Hardison & Roll, 2016; Pike, 2008). 18 Because the link between MBIs and physical rehabilitation is nascent, there has been no research which explores how MBIs might translate to the setting of hand therapy. However, there are a variety of standardized MBIs that may prove to be useful spanning from simple one-time meditations up to requiring a very high level of involvement (e.g., practice at home) (Hardison, & Roll, 2016). While there is a great heterogeneity of dosage, target outcome, and strength of effect for MBIs which changes based on the needs of the population in question, there is likely a ‘just-right’ implementation for the use of MBIs in hand therapy. Our research lab recently conducted a small pilot study that took a first step towards integrating MBIs in hand therapy. Standard treatment was supplemented with a brief, one-time MBI (i.e., body scan) with 21 patients in an outpatient, hospital-based hand therapy clinic. Despite the limited scope of the mindfulness intervention, patients reported a statistically significantly reduction in anxiety across the session as compared to a session including biofeedback or standard care alone (p<.05). Specifically, scores on the state subscale of the State-Trait Anxiety Inventory (Spielberger et al., 1980) reduced by 4.90 points following the 20- minute MBI, while scores reduced by only 0.29-0.70 following other interventions. Results for stress as measured by salivary cortisol showed a trend toward an interaction of intervention and time (p = .10) from 0-20 minutes (Figure 1.1). These results provide initial proof of concept for using an MBI within hand therapy. Specifically, the effect of reducing anxiety for patients quickly within one brief treatment suggests that anxiety may be an important target. Moreover, it indicates that MBIs may be useful as preparatory activities at the start of an intervention session. Secondly, the trend noted for a greater decrease in stress response across the session using a MBI indicates that the use of these 19 Figure 1.1. Results of Mind-Body Interventions in Hand Therapy Across One Session interventions as part of standard care may be useful for addressing other psychosocial needs of patients with MSDs. Mindfulness-based interventions may also be active on other outcomes relevant to occupational science which we did not measure in this pilot study. For example, recent literature has identified that mindfulness may improve occupational engagement (Elliot, 2011; Reid, 2011). As a meditative practice, mindfulness is itself an occupation, but is also discussed as a mindset that changes the experience of other occupations – specifically mindful awareness may improve engagement in occupations through embodiment (Stroh-Gingrich, 2012). Multiple additional questions require examination, primarily related to the implementation and utility of MBIs in hand therapy. The MBI evaluated was very brief and occurred only one time; therefore, the appropriate dosage of the MBI and how to integrate the MBIs across a whole episode of care remain unknown. The dosage of a MBI is especially important because current standardized, evidence-supported MBIs rely on extensive practice 20 across as much as 12 weeks. In addition to understanding appropriate dosage, the feasibility and acceptability of including MBIs across the full episode of care in hand therapy for therapists and patients requires more exploration. Finally, only a limited set of outcomes centered around psychosocial experiences (i.e., anxiety and stress) have been evaluated. While it may be salient to reduce anxiety quickly and at the beginning of a therapy session, we have not explored if this reduction in anxiety leads to improved treatment uptake on the part of patients. Also, there may be other, unidentified targets that mindfulness acts upon within hand therapy that did not present themselves due to the small dosage. It is necessary to examine these factors and to develop a theoretical model for implementing MBIs in hand therapy that explores mindfulness and its links to treatment-relevant mediators and outcomes. Within the following sections I will summarize existing evidence related to various mediators of hand therapy outcomes that could be targeted by MBIs. Specifically, I will discuss the relationship of MSDs to psychosocial outcomes and discuss two primary areas of treatment uptake (i.e., adherence and engagement), and I will situate these components into a preliminary logic model to guide research in this area. 1.1.2. The Relationship between MSDs and Psychosocial Symptoms To explore and explain the use of MBIs in hand therapy, it is first important to understand the relationship of MSDs to psychosocial needs of patients. The impact of MSDs goes beyond the purely physical manifestation; that is, MSDs result in more than just a disruption of body structures. Traumatic injuries to the upper extremity (e.g., flexor tendon laceration, boxer’s fracture) may be accompanied by distress due to loss of function, persistent 21 pain, occupational role disruption, visual appearance of the injury, or traumatic stress as residual from the injuring event. Similarly, although there may not be significant visual appearance of injury and there is likely not traumatic stress from an isolated injuring event, chronic and over- use injuries (e.g., carpal tunnel syndrome, DeQuervain’s Tenosynovitis) limit functional performance, cause persistent pain, and disrupt occupational roles. The psychological manifestation of a physical injury is the result of the close relationship between the mind and the body. Moreover, the intertwining between body and mind is uniquely expressed for the upper extremities. Human hands are a representation of the self and serve as the primary means that typical humans physically interact with the world (Kielhofner, 2014). Injury to the hand disrupts embodiment of daily activities by changing self-perceptions. Individuals with an injury move from a sense of self including the hands and taking action naturally into a self and a separate injured hand that wants to take action but is disrupted. Within this section I will discuss the relationship between mind and body as it is expressed in the co-occurrence of physical and psychological symptoms resulting from injury to the upper extremity. Injury to the upper extremity involves a strong psychosocial component that interacts with patients’ functional status at the end of treatment (Gustafsson, Persson, & Amilon, 2002; Hannah, 2011). Psychosocial needs specific to hand therapy patients have been reported as especially important in cases of acute trauma such as amputation (Grob, Papadopulos, Zimmermann, Biemer, & Kovacs, 2008) and chronic peripheral nerve injuries (Bailey et al., 2009). Moreover, patients who have other unaddressed psychosocial needs like depression may display increased short-term physiological stress response (Pace et al., 2006) that further interferes with healing. Once entering treatment, unaddressed psychosocial comorbidity with physical injury to the upper extremity often leads to poor functional outcomes in treatment – 22 especially in the case of return to work (Michaels et al., 1998; Hennigar, Saunders, & Efendov, 2001). Psychosocial factors and MSDs often co-occur, but they also can be mutually causal. For example, psychosocial stressors have been identified as strong predictors of work-related MSDs. Distressed workers have a statistically significantly higher risk for upper extremity injuries more so than the risk for neck, shoulder, or low back injuries (Hauke, Flintrop, Brun, & Rugulies, 2011). The pathway for psychological distress leading to physical injury is posited to be through the mechanism of the short-term stress response which affects blood supply to the extremities, inhibits anabolic activity, and increases muscle tension while completing work tasks. Therefore, as hand therapy patients re-enter previously held occupational roles, unaddressed psychosocial symptoms of an injury may lead to re-injury or disruption of the physical healing process. Yet, this topic is understudied and there is a dearth of research specific to hand therapy. More research is warranted exploring the incidence of psychosocial needs in this setting, and how to best address the issue. When I conducted an exploratory qualitative study of hand therapists’ perspectives on the provision of care in preparation for this dissertation, one of the most frequent recurring themes was the importance of understanding and meeting the psychosocial needs of patients. The therapists discussed strategies such as therapeutic uses of self, active listening, and maintaining a positive and fun healthcare climate. For example, one therapist stated: “If I know somethings going on [with a patient], I might say, let's go [to a private space]. You know? Anything you want to talk about? Or, you know, you want to tell me more about the accident? … They pretty much cry in front of me right here.” These therapists recognized that it was difficult for a patient to successfully engage with the rehabilitation process or return to previous roles if that patient 23 was anxious or depressed. This finding is substantiated by recent literature which identifies psychosocial outcomes as having a great impact on care parameters of hand therapy (Opsteegh et al., 2009; Bailey et al., 2009), and that psychosocial outcomes may account for much of the variance in disability among patients with the same diagnosis (Nota, Bot, Ring, & Kloen, 2015). Despite the importance of psychosocial needs, little is known about this topic specific to the treatment of typical patients entering hand therapy. Much of the available research has been conducted outside of the United States, is outdated, or identifies patients who have severe injury as the target of study, failing to catalog the experience of typical hand therapy patients. Moreover, current literature does not provide an evidence base for hand therapists targeting patients’ psychosocial needs. While many therapists learn to build successful therapeutic relationships with patients, it is often done extemporaneously as a part of their work instead of applying a learned strategy or standardized method (Mclean & Cole, 2008). It is unfortunate that therapists are often required to rely merely on intuition or anecdotal experiences to determine how to address patients with such needs, and patient experiences likely vary greatly depending on which therapist is providing interventions. A more direct approach would likely result in more effective, more widely applied strategies for addressing psychosocial concerns in this setting. 1.1.3. Patient Adherence to Medical Interventions Patient adherence has been identified as an important mediator in the success of health- related interventions. Adherence originates from the medical science literature and is a revision of the earlier concept of compliance (Haynes, Taylor, & Sackett, 1979; Jay, Litt, & Durant, 1984). Research on compliance initially was concerned with the diligence with which patients 24 took medications as prescribed by a physician and the rate of attendance for medical appointments. This was later expanded to include other physician prescribed health-behaviors such as diet and exercise - especially in relation to lifestyle dependent diseases. The current conceptualization of adherence is complex; therefore, in this section I will give a historical perspective on the relationship between compliance and adherence, discuss current understandings of adherence, and describe implications for adherence research within the setting of hand therapy. Early compliance literature assumes that physicians know what is best for patients, and that the onus for positive health behavior lies solely on the patient following through with recommendations. Unfortunately, this way of thinking led to a discussion in the medical literature about “good” versus “bad” patients (Kelly & May, 1982). Patients who did not comply or who were perceived as stubborn, angry, or too assertive were evaluated more poorly by nurses and may have evoked unfairly negative staff interactions. Although medical practice has progressed to a more nuanced understanding of patients’ roles within their own care, the idea that ‘physicians knows best’ continues to some extent. For example, a recent article evaluates physicians’ use of argumentative strategies when providing medical advice (Labrie, & Schulz, 2015). Videos of physician/patient visits were recorded and coded for types of argumentation. The result of the study showed that if physicians provided more convincing or impassioned arguments that refuted patients’ incorrect beliefs, the medical visit was perceived to be more successful. This perspective is short-sighted in that it ignores patient autonomy and fails to recognize that patients may have legitimate cause to object to treatment. Additionally, it is important to accept that neither medical advice nor procedures are always perfect, even when using the best available research to back up treatment protocols. 25 Many historical examples demonstrate that standard practice (e.g., surgery, medication prescription) can be ineffectual or even harmful (Leape, et al., 1991). Therefore, it is unsurprising that some patients would be angry or non-compliant. Moreover, squashing patients’ strongly held beliefs with a clever argument is unlikely to change patients’ opinions in the long term. It is more likely that patients are simply going along in the moment with what they are being told. The perspective of the physician as the sole authority on what is good for patients has waned significantly in recent years and been replaced with more collaborative models of care, but it continues to haunt the medical culture. Despite these shortcomings, there is still merit to the idea of medical providers as experts; medical providers are just not the sole experts. While providers maintain their expert status on medical issues, there has recently been more acknowledgement of patients as experts of their experiences. Patient-centered care has prevailed as a dominant theory in medicine, which respects patient autonomy through shared decision-making (Barry & Edgman-Levitan, 2012). Also, strategies taken from motivational psychology such as motivational interviewing (Rollnick, Miller, Butler, & Aloia, 2008) and applied Self-Determination Theory (Deci & Ryan, 1985; Ryan & Deci, 2000) are becoming popular as a component of medical visits. This cultural shift toward shared decision-making and shared expertise has improved patient health outcomes and patient-physician relations (Falvo, 2011; Stewart, et al. 2000). It has also led to a softening of the concept of compliance by renaming it adherence and expanding it to include patient perspectives. For example, the current definition of adherence via the World Health Organization (2003) has acknowledged the importance of patient autonomy in choosing the components of treatment. Descriptions of patient-clinician interaction have changed to partnership, alliance, and concordance. 26 Nonetheless, adherence is still measured by tracking the quantity of health-behaviors which are aligned with medical instructions. Even collaborative conceptions of adherence cannot escape that medical advice is privileged above patient perspectives. In fact, all medical professions, including occupational therapy, exist because of the assumption that clinicians have a specific and distinct base of knowledge which they impart through medical procedures or patient education (Abbott, 1988). That is, if patients already knew the best way to resolve a fracture, heal a severed tendon, or regain function for activities of daily living, then there would be no need for treatment. Complementary to this, therapy can have no effect on the process of healing for patients unless patients do indeed adhere, at least in part, to therapist-led treatment. Therefore, even within a collaborative care model, the term adherence still describes how often patients are following through with what clinicians have deemed as optimal for supporting healing. Yet, optimal interventions for supporting healing will differ for each patient due to individual factors (e.g., home environments, values, needs, genetics, and other affordances and constraints). While clinician instructions can never perfectly optimize healing, on average, medical advice and procedures are useful. Therefore, adherence remains an important, if blunt, tool for predicting positive outcomes. The better the treatment the more adherence should have an effect, but perhaps there is a more meaningful way to approach the dilemma of the patient-therapist relationship that expands beyond checking off a list of behaviors the patient did or did not complete during therapy. That is, a more salient construct that captures the interaction between client and therapist honoring shared expertise and collaboration. Even as a blunt tool adherence is essential in physical rehabilitation (Howell & Peck, 2013; Sandvall, Kuhlman-Wood, Recor, & Friedrich, 2013). Rehabilitation protocols for most 27 hand therapy interventions ask patients to complete controlled exercises multiple times a day, requiring significant dedication on the part of the patient. Simply put, it is impossible for patients to experience maximal recovery unless they are working towards this goal both during therapy and outside of therapy visits. Adherence has been identified as accounting for up to 50% of the variance in outcomes for hand therapy diagnoses (Lyngcoln, Taylor, Pizzari, & Baskus, 2005). The ability of patients to follow through with treatment recommendations of therapists has a great impact on their functional outcome, therefore it is very important to maximize adherence rates. Contributors to adherence rates in rehabilitation include therapist-led behavioral interventions, supervised exercise time, and certain patient factors. Notably, patients’ perceived locus of control (Beinart, Goodchild, Weinman, Ayis, & Godfrey, 2013; Brewer, Cornelius, & Van Raalte, 2013), stress, mood, and self-motivation have been shown to predict adherence behavior (Brewer et al, 2003; Brewer et al., 2013). Despite its importance, adherence rates in physical rehabilitation are as low as 1 in 3 individuals (Sirur, Richardson, Wishart, & Hanna, 2009). Strategies for improving adherence in physical rehabilitation are limited in scope and are not well supported by the literature. These strategies often include direct observation by the therapist or imposing external structure on patients. Furthermore, there is limited evidence for any short-term effect on adherence using current behavioral interventions, and evidence to support long term effects is absent (Sanford, Barlow, & Lewis, 2008). This is perhaps because behavioral interventions for improving adherence in physical rehabilitation are framed from the clinicians’ perspective of needing the patient to comply, which fails to harness patients’ agency in the process of healing. 28 1.1.4. Engagement in Rehabilitation Engagement is a term often used colloquially to describe a way of doing a task with focus or interest, and may be a better tool than adherence for understanding how involved patients are in their medical care. The term has a specific meaning depending on which discipline is discussing it. For example, task engagement is described in psychology as a higher order construct composed of energy, motivation, concentration, hedonic tone, and suppression of task- irrelevant interference (Lequerica, et al., 2006; Matthews, et al., 2002). Whereas in occupational science, engagement is a core construct that is entwined with the enactment of occupations. In this section I will discuss the implications for the construct of engagement from an occupational science perspective and explore how it relates to the hand therapy context. Engagement in occupational science is a construct that describes the interrelatedness between social actors and the process of involvement with an activity (Lawlor, 2012). Engagement describes a quality of an activity, is woven with sociality, and is specific to every individual from their perspective. A central hypothesis in the discipline of occupational science is that engaging in meaningful occupations leads to positive outcomes for health and wellbeing (Yerxa, 2013; Wilcock, 2007). This framing for engagement comes from an experience-near vantage point and may not be accurately captured as a quantitative outcome. That is, the richness and depth of the experience of engaging in an activity are difficult to represent on a Likert scale. Consequently, much research in occupational science about engagement makes use of qualitative methodology. Facilitating engagement within occupational therapy is cited in the Occupational Therapy Practice Framework: Domain and Process (AOTA, 2014) as being one of the essential goals for 29 treatment. The term in this context refers to a sense of choicefulness, motivation, and meaningfulness within the doing of the occupation such that mind, body, and spirit are nourished. This framing makes engagement a very attractive mediator to study for any occupational therapy intervention – especially because engagement more accurately characterizes patients’ agency within treatment while still acknowledging the guidance of therapists as important. Unfortunately, clinical research on engagement lacks tools consistent with occupational science for quantitatively measuring engagement. For example, the Hopkins Rehabilitation Engagement Rating Scale is one of the most widely used tools and has been related to functional outcomes in physical rehabilitation (HRERS; Kortte, et al., 2007). Yet, the tool is composed of 5 components as rated by the therapist: patient attendance, attitude expressed toward therapy, need for prompting by the therapist, acknowledgment of needing therapy, and active participation. Secondly, the Rehabilitation Therapy Engagement Scale was developed to measure engagement in rehabilitation for adults with acquired brain injuries (Lequerica et al., 2006). It is also a therapist-rated scale, but covers more breadth of the construct of engagement including rating patients’ psychological states like hope and determination. Both scales are well constructed and have demonstrated good reliability and validity. However, the authors’ conceptualization of engagement in these scales appears to differ significantly from that of occupational science. That is, the scales fail to ask patients for any input, do not recognize sociality as a component, and have some significant overlap with the concept of adherence. Specifically, attendance at therapy, needs for prompting, and active participation from the therapist point of view all seem to be indistinguishable from how adherence is measured. 30 Patient-rated scales may come closer to capturing the concept of engagement in rehabilitation, but they are less well researched, and often are taken from other disciplines. A promising measurement tool that seems more consistent with occupational science’s view of engagement comes from motivational psychology, the Intrinsic Motivation Inventory (McAuley, Duncan, & Tammen, 1987). This scale integrates patients’ responses on 7 subscales: perceived competence, effort/importance, pressure/tension, perceived choice, value/usefulness, and relatedness to other social actors. Though engagement is not specifically named, this measurement tool makes use of many occupational science-consistent constructs within engagement. Specifically, it allows patients to speak for themselves, recognizes sociality, and identifies patient’s agency and values as a component of the experience. Motivational psychology seems to describe an overlap between intrinsic motivation and the components of engagement which are consistent with an occupational science perspective. Also, MBIs have been cited in psychology literature as enhancing intrinsic motivation (Brown, Creswell, & Ryan, 2015). The process of enhancing awareness of and interest in the body state through mindful meditation improves autonomy. It does this by increasing self-knowledge, improving acceptance of body states, and self-efficacy for managing negative psychological experiences. Each of these components contribute to what psychology calls intrinsic motivation but may also be active on the occupational-science-centered construct of engagement. This discussion parallels the occupational science literature which relates mindfulness states to increased engagement in occupations (Reid, 2011). The theoretical overlap between intrinsic motivation and engagement in occupations warrants further exploration. Optimizing engagement in therapy instead of adherence may be a more meaningful approach for maximizing the benefit of treatment while honoring patient agency. Yet, the 31 concept of engagement resists quantitative measurement, and may be most appropriately captured using qualitative methods. Engagement in an activity as described by an outside rater fails to contextualize the experience from the engager’s perspective and ends up looking a lot like adherence. Whereas patient-report scales may be more theoretically consistent but are less well researched and do not specify that they are to be used for measuring engagement. Nonetheless, using engagement as the salient outcome during therapy times as the metric for success acknowledges the expertise of clinicians while still empowering patients; despite the pitfalls, measuring engagement may be an important outcome from a MBI. 1.1.5. Summary In summary, there is a need for psychosocial symptom management in hand therapy which has been understudied. Mindfulness-based interventions are used to address psychosocial symptoms but have yet to be implemented in this setting. Our research lab recently conducted a study which demonstrated promising results of an MBI across 1 therapy visit in hand therapy. Primary results of this study showed that the MBI fits as a preparatory intervention within therapy and was active on patient anxiety. I propose that patient anxiety and other metrics of psychological wellbeing are essential outcomes for hand therapy as performed by occupational therapists using a “whole person” approach (AOTA, 2014). Also, that attention to psychosocial outcomes in this setting may have a synergistic effect with existing treatment modalities to improve physical functioning by improving patient engagement in care. MBIs theoretically target patient uptake of therapy by increasing experiences of embodiment of movements and sensations. Yet, the pathway directly from MBIs to treatment uptake nor from MBIs through 32 psychosocial symptom management to treatment uptake has not been investigated. Currently, the primary means of measuring treatment uptake in physical rehabilitation is adherence, which is an important component of patient success in therapy but fails to fully recognize patient agency. Engagement may be a better metric for how well a patient is involved in their care and actively supporting recovery. However, significant challenges exist with measuring engagement in hand therapy, with most reductionistic measures of engagement appearing to be inadvertently measuring adherence. Occupational science has a unique lens on engagement that may be useful when investigating treatment uptake in hand therapy, and may give further insight into how MBIs facilitate standard treatment in this setting. Taking these psychosocial and treatment uptake mediators into consideration, I have constructed a preliminary logic model that will be useful in evaluating the impact of MBIs on outcomes in hand therapy (Figure 1.2.). Evaluating the mediating components of this model will be the crux of my dissertation. 33 1.2. Dissertation Overview 1.2.1. Purpose Considering the need for more explicit strategies for addressing psychosocial concerns in hand therapy and the necessity for maximizing engagement of hand therapy patients in therapeutic processes, this dissertation explored the utility of MBIs in hand therapy. MBIs are a natural fit as a patient-centered approach that can target psychosocial needs, while also facilitating adherence and patient engagement in the process of rehabilitation for MSDs. Specifically, mindfulness-based interventions enhance an individuals’ awareness of the body state, and therefore when paired deftly with treatment modalities it may increase patients’ insight Figure 1.2. Logic model for integrating mindfulness interventions in hand therapy for adults with traumatic injury 34 of their injury and improve the accuracy of their therapeutic exercises. Moreover, it may help patients who are avoiding thinking about their injury to employ a curious and non-judgmental attitude towards their injury that facilitates treatment. To gain understanding of how MBIs may be useful in hand therapy, the purpose of this dissertation was to explore the relationships identified in preliminary model presented earlier (Figure 1.2). Given the gaps in knowledge identified in this introduction, the key questions that guided this work were: (1) What are the unaddressed psychosocial needs of patients in hand therapy? (2) How is an MBI most feasibly implemented across a full episode of care in this setting? (3) What are patient experiences having taken part in an MBI? (4) What are the preliminary effects of an MBI for proximal outcomes? 1.2.2. Overall Design and Specific Aims This dissertation was composed of two concurrent studies that shared a sample. First, a needs assessment for MBIs in hand therapy was completed using a cross-sectional survey of typical hand therapy patients. Second, a subset of these patients who had traumatic injuries were enrolled in an explanatory sequential mixed methods study (Creswell & Plano Clark, 2011). The purpose of this cohort study was to evaluate the implementation of an MBI in hand therapy over 4 weeks of hand therapy. The mixed methods study was primarily quantitative, using a repeated measures design to compare mindfulness-relevant targets across time. The study was secondarily 35 qualitative to examine perspectives on the quantitative findings via triangulation (i.e., corroboration of a result across different epistemic approaches), complementarity (i.e., enhancing a result by illustrating why or how it happened), and expansion (i.e., development of new breadth and depth of theory). As such, after the MBI was complete, participants (n = 20) were invited to share their experiences of the MBI via individual semi-structured interviews. This explanatory sequential mixed-method design was chosen because it could simultaneously evaluate the theoretical model of MBIs presented in this proposal and illuminate unknown factors emergent from patients’ experiences. The deductive components are useful for verifying theory and establishing that the MBI is active on study outcomes. However, they are limited to only providing answers to the specific research questions asked. As a pilot study, expansion of understanding how MBIs might be useful in this setting requires a qualitative, inductive component. The inductive component is useful for theory generation and depth of understanding, but are unable to establish falsifiability of the proposed model. Using this mixed- method design, the study addressed three aims as depicted in Figure 1.3 and described below. Figure 1.3. Visualization of Overall Design and Analyses 36 Aim 1: Identify the need for mindfulness-based interventions in hand therapy integrating patient perspectives. The need for a MBI in hand therapy is expressed in three facets: (1) patients’ unmet, subclinical psychosocial needs (e.g. depression, anxiety, and pain catastrophizing), (2) baseline levels of mindfulness for typical patients, and (3) patients’ feedback about interest in receiving a MBI as a part of their care in hand therapy. My hypothesis was that a meaningful number of patients have unmet psychosocial needs as a part of their experience of physical injury. Also, that patients with traumatic injuries have a greater need for MBI as a part of their care. To carry out this aim, I conducted a cross-sectional survey of hand therapy patients recruited from two hand therapy clinics – one embedded in an academic specialty hospital and one community-based outpatient facility. The survey included metrics for depression, anxiety, pain catastrophizing, pain self-efficacy and mindfulness (See Appendices A and B). Participants were provided with a vignette a describing one possible implementation of MBI in hand therapy and were asked how interested they would be in receiving this type of intervention as a part of their care. A selective prediction model was used to identify the characteristics associated with desire for MBIs. Correlative analyses determined how psychosocial factors of hand therapy patients were related to their score on a standardized mindfulness scale. This was done to determine if there is a relationship between how mindful patients are naturally with their psychological wellbeing before an intervention. Aim 2: Evaluate the effect on mediating variables (i.e., psychosocial and treatment uptake outcomes) of an integrated MBI in hand therapy for patients with traumatic injury. 37 Hand therapy patients receiving an MBI as a preparatory activity in their care plan were evaluated across a 4-week period. For this study, the MBI consisted of a series of brief mindfulness meditations provided on a weekly basis at the outset of a hand therapy visit (See Appendix C for sample text from meditations). All patients received the meditations in the same order and psychosocial (i.e., anxiety, pain, and pain catastrophizing) and treatment uptake (i.e., adherence and engagement) were measured (See Appendix A). Analysis of this aim was twofold: (a) paired t-tests identified changes in pain and anxiety pre to post the mindfulness meditations each week; (b) ANOVA evaluated effects of time on psychosocial and treatment uptake outcomes. My hypotheses were (1) that participants receiving the mindfulness would have a significant decrease in anxiety and pain with each weekly intervention; and (2) patients would show a trend towards psychosocial outcomes and engagement across the 4-week period. Aim 3: Explore patient experiences of receiving an integrated MBI during the course of their care in hand therapy. I conducted semi-structured interviews with patients who received the MBI as supplemental to their treatment in hand therapy. 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Retrieved from: http://www.who.int/chp/knowledge/publications/adherence_Section1.pdf Yerxa, E. (2013, September 6). Nurturing the Human Spirit for Occupation [Video Lecture]. Retrieved from: http://ucc.hosted.panopto.com/Panopto/Pages/Viewer.aspx?id=fc34e889-1531- 46e8-93e3-d2914fa09d35 49 CHAPTER 2 A Needs Assessment for Mindfulness-Based Interventions in Upper Extremity Rehabilitation 50 2.1. Introduction The increasing cultural and scientific interest in mindfulness meditation as a healthcare intervention has led to a discussion in the occupational therapy literature about how this may fit within specific practice areas or theoretical constructs from occupational science. These include exploring mindfulness states as related to occupational engagement (Reid, 2011) and the use of mindfulness in occupational therapy education (Reid, 2013; Stew, 2011; Gura, 2010). Also, mindfulness has been deployed by occupational therapy to treat urinary incontinence (Baker, Costa, & Nygaard, 2012) and as an adjunct to physical rehabilitation. However, translational studies on this topic are sparse and of low quality – especially in the realm of physical rehabilitation (Hardison & Roll, 2016). That is, very little research takes manualized mindfulness interventions into real-world occupational therapy settings. Laboratory-based studies and research with populations not currently attending occupational therapy are preliminarily useful but also limited in developing mindfulness meditation as an evidence-based practice specific to occupational therapy. Additional translational work is necessary before mindfulness-based interventions (MBIs) can be called an evidence-based practice within occupational therapy – especially for settings related to physical dysfunction. A full exploration of the prevalence of mindfulness- relevant targets (i.e, pain, anxiety, stress, and depression) across various OT settings will illuminate what need there may be for this type of intervention as an adjunct to standard care. Moreover, patient and/or client acceptability of mindfulness meditation as a component of care needs to be assessed before large-scale implementation within a confirmatory trial. 51 Psychosocial sequelae within patients who have sustained a physical injury is a developing area of research; however, current evidence is limited to a few studies with small sample sizes (Ladds, Redgrave, Hotton, & Lemyman, 2017). Reported prevalence in this patient population of clinically relevant anxiety ranges from 24% to 74% and psychological symptomology loads significantly into the trajectory of recovery for physical injury. Specific to hand therapy patients, cases of acute trauma such as amputation (Grob, Papadopulos, Zimmermann, Biemer, & Kovacs, 2008) and chronic peripheral nerve injuries (Bailey et al., 2009) are especially comorbid with psychosocial symptoms. Whereas, unaddressed psychosocial comorbidity with injury to the upper extremity often leads to poor functional outcomes in treatment, accounting for differential levels of disability among patients with the same diagnosis (Nota, Bot, Ring, & Kloen, 2015). Psychosocial symptoms leading to differential functional outcome is especially pronounced for patients returning to work (Michaels et al., 1998; Hennigar, Saunders, & Efendov, 2001). The need for mindfulness-based interventions in hand therapy is expressed in three facets that will be explored in this article: (1) patients’ unmet, subclinical psychosocial needs (e.g. depression, anxiety, stress, and pain catastrophizing), (2) baseline levels of mindfulness for typical patients, and (3) patients’ expressed interest in receiving a MBI as a part of their care in hand therapy. Our primary hypothesis was that a meaningful number of hand therapy patients have unmet psychosocial needs as a part of their experience of physical injury. Our secondary hypothesis was that patients with more severe injuries have a greater need for and interest in MBI as a part of their care plan due to a positive associate between severity and psychosocial needs 52 2.2. Methods 2.2.1. Study Design This study employed an observational, cross-sectional design with hand therapy patients. Participants answered a one-time online survey across four main content areas: demographic information, injury and physical functioning, mindfulness traits, and psychosocial symptoms and traits. Survey data was collected anonymously and managed using REDCap (Research Electronic Data Capture) (Harris et al., 2009). REDCap is a secure, web-based application designed to support data capture for research studies, providing: 1) an intuitive interface for validated data entry; 2) audit trails for tracking data manipulation and export procedures; 3) automated export procedures for seamless data downloads to common statistical packages; and 4) procedures for importing data from external sources. All data analyses were conducted using IBM SPSS Statistics for Windows, Version 24.0 (Armonk, NY: IBM Corp). The study was approved by the university’s institutional review board, and all participants were provided with an information sheet regarding the purpose of the study prior to providing responses to the survey. 2.2.2. Subjects and Recruitment Participants were recruited from a population of patients entering hand therapy at two outpatient clinics (Site A and Site B) in the southwest of the United States of America. Site A was located within a specialty hospital at an academic medical center. Site B was a community- based rehabilitation facility and satellite location for a regional medical center. Each clinic was given fliers with a brief description of the study to provide to new patients. Interested patients were given a link to the web-based, anonymous, one-time survey implemented through REDCap. Inclusion criteria for the study were that participants needed to (1) be new patients attending 53 therapy for an upper extremity diagnosis, (2) within the first three therapy visits of the current episode of care, (3) be at least 18 years old, (4) feel comfortable answering survey questions in English, and (5) have access to a web-enabled computer. Pre-screening for eligibility was done by the hand therapists handing out the survey links, that was then confirmed in an online pre-survey section that asked participants’ age and number of visits to their therapist. Individuals who did not meet the age or number of visits requirements for inclusion had their web browser directed away from the survey; whereas, individuals meeting the requirements were allowed to proceed to the survey proper. The survey was designed to last approximately 30 minutes, but there was no time limit. Patients completed the survey at a location of their choice and were allowed to provide responses at their own pace. The official information sheet describing the study was provided as the first portion of the online survey as well as freely available via hard copy at each site. Compensation was provided for all individuals who completed the survey through a downloadable code provided at the end of the survey for an electronic gift card for 10 USD. 2.2.3. Survey Pre-Test and Validation Before the survey was implemented at a large scale, a pre-test was conducted to assess for burden on participants, ascertain the expected time range for completion, and ensure that the questions and flow of the survey was understandable. Two patients from Site A were recruited into the pre-test using the same inclusion criteria as the general study. A researcher (MH) sat with these individuals as they filled out the online survey. A stopwatch was used to time survey section completion, field notes were taken concerning the observation of the pre-test participants in the process of completing the survey, and a brief post-survey interview was completed 54 soliciting general feedback about burden. Based on feedback from the pre-test, the survey appeared to have low emotional burden and no questions stood out as being overly intrusive. While physical impairments from these individuals’ injuries did affect the speed at which they were able to answer questions, they were both able to answer all the questions using provided radial dial buttons, slider bars, and open-ended text boxes. Participants had questions about some of the language in the survey and edits were made to simplify language and add clarity. Completing the survey took between approximately 20 and 35 minutes, and pre-test participants felt the 10 USD compensation seemed appropriate for the time spent. Data from these individuals was not included in the final analysis. 2.2.4. Measures Survey measures were split into four categories: (1) demographics, (2) injury and functioning, (3) psychosocial traits and symptoms, and (4) mindfulness traits. Demographic questions included age, gender, race, and change in work status since injury. Injury and functioning measures made use of both validated assessments for pain and function as well as a study-specific short-answer survey about the nature of their injury. Participants were asked to report the date of their injury, to indicate the date entering therapy, and to provide a description of the injury/diagnosis that included the mechanism of injury. Pain level was measured using a visual analog scale which was converted to a score from 0 to 100. This scale asked participants to slide a bar across a line with the endpoints of no pain up to the worst level of pain. Functioning was assessed using the Upper Limb Functional Index (ULFI; Gabel, Michener, Burkett, & Neller, 2006), which is highly responsive in rehabilitation for musculoskeletal disorders. Participants indicated their level of impairment on 25 items concerning functional 55 tasks. Scores were summed and calculated as a percentage of upper extremity functional ability. Finally, pain self-efficacy was measured using the Pain Self-Efficacy Scale (PSEQ; Nicholas, 2007). This measure reflects participants’ self-assessment of confidence in performing functional tasks with pain as well as ability to cope with pain. Psychosocial traits and symptoms data collection used existing validated scales to assess for anxiety, depression, and pain catastrophizing. The State-Trait Anxiety Inventory (STAI) is a widely used, valid measure of temporary “state” and long-standing “trait” anxiety with high internal consistency (Spielberger, Vagg, Barker, Donham, & Westberry, 1980). Depression was measured using the Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, 1977). The CES-D was developed to be used validly as a first screening tool on the general population that ranges in depressive symptoms. The Injured Workers Survey (IWS; Hennigar, Saunders, & Efendov, 2001) is a 17 item self-report survey used to screen patients with hand injuries for post- traumatic stress symptoms. The Pain Catastrophizing Scale (Sullivan, Bishop, & Pivik, 1995) is a valid, internally consistent and widely used self-assessment for an individual’s reaction to physically painful experiences. Mindfulness data collection made use of both a validated measure for trait mindfulness as well as a study specific survey for familiarity with mindfulness, and solicited general feedback in short-answer format. Participants were asked to describe their familiarity with mindfulness practices, to list any current mind-body activities (e.g., meditation, yoga, Tai Chi). Trait mindfulness was assessed using the Five Facet Mindfulness Questionnaire Short Form (Baer, Smith, Hopkins, Krietemeyer, & Toney, 2006; Baer et al., 2008) and reports 5 mindfulness- 56 related subscales (i.e., acting with awareness, non-judging, non-reacting, observing, and describing). Participants were asked to rate their agreement from 1-5 for 15-items. In addition to evaluating psychosocial needs and mindfulness traits, a primary focus for this study was to elicit the level of interest in receiving a mindfulness-based intervention as a part of hand therapy care. The participants were given a brief written description of mindfulness, how mindfulness-based interventions could be implemented as a part of hand therapy, and a short explanation of why this might be helpful (Appendix B). Then, participants were asked to rate their level of interest on a 4-point scale from “Not Interested” to “Very Interested”. This scale was then collapsed into a dichotomous data point with “Not Interested” or “Mildly Interested” scored as 0 and “Interested” or “Very Interested” scored as 1. We collapsed these data for two reasons: (1) to approach the analysis conservatively as this mindfulness interest scale was generated as a part of this study without previous psychometric testing and (2) because of the nature of our regression wanting to predict overall interest and acceptability; whereas differential levels of interest were less meaningful. 2.2.5. Analysis Predicting Patient Interest in Mindfulness-Based Interventions (MBIs). Descriptive statistics were calculated for all potential predictor variables as well as for the dependent variable of participant interest in MBIs. An exploratory data analysis was conducted as preliminary step to ensure that all potential predictors satisfied the assumptions of logistic regression analysis. We then conducted a logistic regression using a forward, stepwise selection method to predict dichotomous participant interest in an MBI. To enter the model, variables had to exceed the threshold of p < .05, and variables in subsequent steps failed to maintain the threshold of p < .10 57 were excluded. The maximum model was eight predictor variables: race, age, injury category, change in work status, dominant side injury, pain, and physical functioning. Appropriate sample size for completing a prediction model is to maintain at least 10 degrees of freedom for error such that n ≥ 10 + k + 1 where n is the total sample and k is the number of predictors in the maximum model. A more conservative rule of thumb is to maintain at least 10 error degrees of freedom per possible predictor such that n ≥ 10k (Kleinbaum, Kupper, Nizam, & Rosenberg, 2014). Therefore, our target minimum sample size was 80 participants for a maximum model involving 8 variables. Exploring the Correlates of Psychosocial Symptoms. The purpose of this analysis was to describe the psychosocial needs of typical patients who are entering hand therapy and identify diagnosis categories that are at higher risk of having unmet psychosocial needs. Therefore, descriptive statistics for the psychosocial traits and symptoms were calculated for this sample. Also, known targets of mindfulness-based interventions (i.e., pain, anxiety, stress, pain catastrophizing, pain self-efficacy, and depression) were evaluated for correlations with trait mindfulness and functional level using spearman’s correlations for cross-tabulations. Spearman’s non-parametric tests were used to provide a conservative analysis considering several variables demonstrating statistically relevant levels of skewness. 2.3. Results The survey was distributed to interested patients at Site A and Site B across a total of 14 months. Recruitment materials were given out to 318 interested individuals. Nine of these were screened out by the survey for being beyond the 3 rd visit in hand therapy. Eligible individuals completed a total of 120 responses representing a response rate of 39%. A common barrier to 58 completing the survey was computer literacy because participants needed to accurately type a web address into their browser to access the survey. Due to the anonymous and self-administered nature of the survey, some responses had missing data. Data was included from all surveys in which participants reached the end of at least one survey section, and any variability due to missing data points is noted in differing N size per outcome as summarized in Table 2.1. Table 2.1. Demographic and Descriptive Data Variable (N) [Scale Range] Category Count (Percent) or Mean (SD) Site (N = 120) Site A: Academic 33 (27.5) Site B: Comm.-Based 87 (72.5) Age (N = 120) 50.3 (17.7) Sex (N = 100) Male 27 (22.5) Female 73 (60.8) Race (N = 112) Native American 1 (.9) Asian 18 (16.1) Black 1 (.9) Latino 24 (21.4) White 60 (53.6) More than one Race 8 (7.1) Injury Category (N = 112) Chronic 33 (29.5) Acute 79 (70.5) Work Status Resulting from Injury (N = 108) Changed 20 (18.5) Unchanged 88 (81.5) ULFI (N = 115) [0 – 100] 41.7 (23.4) Pain (N = 113) [0 – 100] 36.2 (24.1) Anxiety (N = 116) [20 – 80] 36.4 (11.5) Depression (N = 116) [0 – 60] 12.5 (9.5) Pain Self-Efficacy (N = 114) [10 – 60] 43.1 (13.6) Pain Catastrophizing (N = 116) [0 – 52] 8.4 (9.0) Mindfulness (N = 120) [15 – 75] 55.5 (7.2) Experience with Mindfulness, Yoga, or Tai Chi (N = 120) Yes 30 (25) No 90 (75) Mindfulness Interest (N = 119) Very Interested 24 (20.2) Interested 32 (26.9) Mildly Interested 36 (30.3) Not Interested 27 (22.7) 59 Participants were predominantly female (60.8 %), averaging 50.3 years of age, and most often either White, Latino, or Asian. Respondents sustained an acute injury in 70.5% and a chronic injury in 29.5% of cases. These injuries led to moderate functional deficits as indicated by an average ULFI score of 41.7. Pain, Depression, Pain Self-Efficacy, and Pain Catastrophizing, were positively skewed, with a few individuals at the extreme of the scale. This indicated that most patients had moderate to low pain, were not depressed, did not catastrophize their pain, and had high pain self-efficacy. Whereas, a small subgroup of patients experienced high levels on each of these scales. Importantly, anxiety followed a different pattern. Anxiety was normally distributed around its mean of 36.4, which is quite close to the clinically relevant cut-off score of 40. Participants were evenly split on their level of interest in receiving a mindfulness-based intervention with 47.1% reporting they were interested or very interested. The forward, step-wise prediction for factors related to this interest in mindfulness iterated through two steps and selected for just two of the possible 8 predictors (Table 2.2) in the maximum model: sex and the Upper Limb Functional Index. Women were 2.806 times as likely in comparison to men to say they were interested in a mindfulness-based intervention as a part of their course of care in hand therapy (p = .044). Whereas, each point increase on the ULFI, indicating higher deficits in functioning, led to a 2.5% increase in odds of being interested in a mindfulness-based intervention as a part of care (p = .014). The total final model accounted for 15.2 % of the variance in interest in mindfulness interventions successfully predicting 67.8% of cases in the data (Table 2.3). 60 Results for the psychosocial correlative analysis demonstrated that many of these outcomes are significantly associated in hand therapy patients (Table 2.4). While, anxiety and depression were highly correlated (r < .746, p < .01), the median depression score was much lower than anxiety and did not approach the clinically relevant cutoff score. Anxiety also demonstrated moderate positive correlations with functional deficits reflected by the ULFI (r = .464, p < .01) and pain catastrophizing (r = .496, p < .01). Trait mindfulness demonstrated weak to moderate correlations with each other psychosocial outcome except for pain. Notably, trait mindfulness was moderately negatively correlated with state anxiety (r = -.542, p < .01) and depression scores (r = -.535, p < .01). Table 2.2. Unadjusted β of All Possible Predictors for Interest in Mindfulness Variable β p Sex 4.239 .039 Race 1 .349 .840 Race 2 .229 .632 Race 3 .233 .630 Age .103 .748 Injury Type 1.783 .182 Dominant Side Injury .306 .580 Work Change 1.980 .159 Experience with Yoga, Mindfulness or Tai Chi .247 .619 ULFI 6.450 .011 Note: Race 1 = Composite (df = 2); Race 2 = Latino in comparison to White; Race 3 = All other categories in comparison to White. ULFI = Upper Limb Functional Index Table 2.3. Final Regression Model Predicting Hand Therapy Patient Interest in Mindfulness-Based Interventions as a Component of Care Variable β S.E. p Exp(β) 95% C.I. for Exp (β) Lower Upper Constant -1.877 .635 .003 .153 Sex 1.032 .512 .044 2.806 1.028 7.660 ULFI .025 .010 .014 1.025 1.005 1.046 Note: Nagelkerke R 2 = .152; Model correctly predicts 67.8% of cases 61 2.4. Discussion This study sought to understand the preferences for or against mindfulness-based interventions of patients who recently entered care in an outpatient hand therapy clinic. Women in this sample preferred mindfulness-based interventions more than men, and greater functional deficits were also associated with increased interest in mindfulness. Secondly, this study explored the prevalence of mindfulness-based intervention targets for this group of patients. Mean anxiety for this sample was near the clinically relevant cut off score indicating that many hand therapy patients experienced anxiety beyond what is typical. Importantly, trait mindfulness appears to be related to each psychosocial outcome except for pain. While it is unclear if improving trait mindfulness will have a mediating relationship improving psychosocial factors for this population, the strength of its associative relationships is suggestive that trait mindfulness deserves further study in hand therapy when addressing psychosocial needs. Table 2.4. Spearman’s Correlations of Psychosocial Sequalae of Upper Extremity Injury STAI: State Pain CES- D ULFI PS- EQ PCS FFMQ STAI: State 1.000 Pain .174 1.000 CES-D .746 ** .229 * 1.000 ULFI .464 ** .329 ** .434 ** 1.000 PS-EQ -.483 ** -.378 ** -.557 ** -.663 ** 1.000 PCS .496 ** .244 ** .543 ** .403 ** -.426 ** 1.000 FFMQ -.542 ** -.098 -.535 ** -.333 ** .315 ** -.311 ** 1.000 Note: * p < .05; ** p < .01; CES-D = Centers for Epidemiologic Study – Depression Scale; ULFI = Upper Limb Functional Index; PS-EQ = Pain Self-Efficacy Study; PCS = Pain Catastrophizing Scale; FFMQ = Five-Factor Mindfulness Questionnaire Short Version 62 Mindfulness-based interventions appear to be acceptable to most patients in hand therapy. While mindfulness-based interventions are thus far unheard of in this practice area, only approximately 22% of patients said they were specifically not interested. The results considering women prefer mindfulness more often than men falls within trends that have been observed in other studies (Bedard et al., 2003; Bedard et al., 2005). However, no previous research on gender preferences for mindfulness has specifically focused on a sample of new patients to hand therapy. While gender and functional status are associated with interest for mindfulness, the overall model only explains a small part of the variance in interest. This is understandable because it is unlikely that any few key factors will be deterministic of individual preferences. Therefore, any large implementation of mindfulness in hand therapy will need to consider patient preferences carefully, and especially so for men. Perhaps the current framing of mindfulness- based interventions can be adapted to be more universally accepted. Mindfulness-based interventions may help to formalize the approach hand therapists take in addressing psychosocial concerns. This is because trait mindfulness appears to be associated with anxiety and depression in hand therapy patients and mindfulness interventions have been shown to improve anxiety and depression in other settings. The correlative nature of the relationship between trait mindfulness and psychosocial outcomes limits this study’s ability to claim that improving mindfulness will lead to improved psychosocial outcomes. However, these results do suggest that exploration of a mediating relationship between trait mindfulness and improved psychosocial outcomes is a reasonable next step. Hand therapy is a significant source of comfort when implemented well. For example, individuals with traumatic nerve injury experience a process of struggling, overcoming, 63 accepting, and transforming that is more complex than captured by traditional outcomes measures (Ashwood, Jerosch-Herold, & Shepstone, 2017). Good communication and compassion from providers had a positive effect on patients because it brought about feelings of safety and progressing towards recovery. Conversely, poor communication about the nature or progress of an injury may cause distress for patients or illuminate difficult psychological experiences of the injury that patients were not ready to face. Yet, over time patients may develop acceptance of their injury despite residual physical limitations. Avoidance-based and denial coping strategies are significantly negatively associated with quality of life, hand functioning and depression, and trauma symptoms (Turkington, Dempster, & Maguire, 2018). Conversely, mindfulness promotes acceptance, nonjudgment, and curiosity surrounding even negative or painful experiences. Results of this survey provide promising information but should be interpreted within the specific context of recruitment and data collection. Participants were all from two clinics in southern California, and their opinions of mindfulness may not be representative of hand therapy clinics across the United States. This is especially relevant because of the over-sample of women who responded to the survey. Also, certain cultural norms for California surrounding knowledge and acceptance of mindfulness practices may not represent the United States at large. However, United States Census Bureau data from 2017 indicates that the representation of different racial and ethnic groups in the communities where the recruitment sites are located closely resembles the respondents to this survey. Specifically, a sample generated randomly from this community would on average contain 71% white and 24% Asian respondents with 29% of individuals identifying as Hispanic or Latino of any race. Finally, the survey response rate was 39%, which may have introduced bias in the results by selecting for individuals whom were more computer 64 literate or whom were experiencing less severe injuries allowing for using a keyboard and mouse. Nonetheless this response rate is similar to the expected response for web-based surveys ranging from 13% to 44% (Cobanoglu, Moreo, & Warde, 2001; Dillman et al., 2009). Unfortunately there is no means of comparing respondents to non-respondents due to the survey’s anonymous design. 2.5. Conclusion Results of this study suggest that upper extremity injury is a complex phenomenon requiring both physical and psychosocial targets of care in order to be most effective. Many patients reported clinically relevant levels of anxiety; however, patients with higher trait mindfulness also tended to report fewer psychosocial symptoms. 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The pain catastrophizing scale: Development and validation. Psychological Assessment, 7(4), 524 – 532. United States Census Bureau. (2017). ACS DEMOGRAPHIC AND HOUSING ESTIMATES. Obtained online from: https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=CF 69 CHAPTER 3 Piloting the Effects of Mindfulness on Psychosocial Outcomes and Treatment Uptake in Hand Therapy 70 3.1. Introduction Integrative mindfulness-based interventions in healthcare have been widely researched (Williams & Kabat-Zinn, 2011) stemming from the original application of mindfulness-based stress reduction (MBSR) for the treatment of chronic pain (Kabat-Zinn, 1982). MBSR uses a secular application of Buddhist philosophy concerning the key values of non-judging, patience, beginner’s mind, trust, non-striving, acceptance and letting go (Kabat-Zinn, 2013). This is paired with learning a meditation practice that guides patients to intentionally and nonjudgmentally become aware of bodily sensations, thoughts, and emotions. The intervention is group-based, intensive, and lasts 8 weeks. It involves daily homework for participants, asking them to meditate on their own, as well as attend weekly 2-hour group sessions with a certified instructor. Group sessions include a discussion about mindfulness, instructor-led meditation, and education about the particular diagnosis being addressed. The target of the intervention is to change participants’ trait-level mindfulness and encourage participants to become consistent mindfulness meditation practitioners. MBSR and similar mindfulness-based interventions (MBIs) have been manualized and highly researched, specifically for use in treating chronic pain, anxiety, and depression (Grossman, Niemann, Schmidt, & Walach, 2004; Hofmann, Sawyer, Witt, & Oh, 2010; Reiner, Tibi, & Lipsitz, 2013). Yet, these findings are predominantly for patients with chronic injury or those being seen in a mental health setting. Mindfulness-based interventions similar to MBSR may also be useful in acute rehabilitation settings. This is because they are manualized, evidence-based, and address many of the common symptoms seen in acute rehabilitation: pain and psychosocial concerns. Psychosocial sequelae of physical injury such as anxiety and depression are less commonly 71 discussed but are indeed well-established components of the experience of musculoskeletal injury (e.g., Grob, Papadopulos, Zimmermann, Biemer, & Kovacs, 2008). Despite the rigorous evidence base supporting MBSR it its potential utility, it is difficult to bring this intervention into traditional fee-for-service models in acute rehabilitation. This is because of the high frequency, intensity, and time commitment of the intervention. Moreover, MBSR seeks to improve patients’ trait level mindfulness by drastically changing life routines in a fashion that might not be acceptable or feasible for this group of patients. Recent research has begun to explore how MBIs might be applied to acute rehabilitation. That is, MBIs have preliminarily been used in physical rehabilitation for musculoskeletal and pain disorders, neurocognitive disorders, urinary incontinence, and vestibular dysfunction (Hardison & Roll, 2016). Unfortunately, this literature is very sparse. Many such studies reflect level III evidence and or demonstrated mixed results. The strongest findings are for MBIs in acute rehabilitation being used for musculoskeletal and pain disorders (Mahoney & Hanrahan, 2011; McCracken & Gutierrez-Martinez, 2011; Pike, 2008; Vindholmen, Hoigaard, Espnes, & Seiler, 2014; Wong et al., 2011; Zangi et al., 2012). While this literature is insufficient to establish how to best apply MBIs to this setting, it does give preliminary support for the acceptability of MBIs in physical rehabilitation and identifies outcomes that are relevant. Expected outcomes of MBIs in acute rehabilitation are similar to those found with their application to chronic conditions. This includes improved pain, anxiety, and pain catastrophizing. One underexplored facet of mindfulness interventions is their link to supporting patient autonomy (e.g., Turner et al., 2016). It is theorized that mindful states promote self- regulation by training people to have a calm sense of awareness about both positive and negative 72 experiences (Brown, Creswell, & Ryan, 2015). Patient autonomous regulation may be an especially salient outcome for this setting because of how it can synergize with standard treatment modalities. That is, patient uptake of treatment recommendations, for example adherence to a home exercise plan, is essential for success during therapy (Howell & Peck, 2013; Sandvall, Kuhlman-Wood, Recor, & Friedrich, 2013). However, there are no evidence-supported interventions that successfully increase metrics of patient uptake of treatment (Mclean, Burton, Bradley, & Littlewood, 2010). Hence an intervention that supports patient’s autonomous regulation could be a new approach to engaging patients in the process of care. There is currently no published evidence that translates mindfulness-based interventions (MBIs) into the setting of hand therapy. While MBIs have demonstrated utility for chronic musculoskeletal disorders, it remains unclear how to most appropriately use them in an acute outpatient setting. Key issues of feasibility must be addressed surrounding appropriate dosage of the intervention, timing of the intervention, focus of the meditations, identification of relevant outcomes measures, and expected effect size for these outcomes. This pilot study sought to address each of these underlying questions and establish the feasibility of implementing an MBI across multiple weeks in one episode of care. The knowledge gained will be used to develop a hand-therapy-specific MBI, allow for power calculations of outcome measures in future similar studies, and understand expected trends across time for psychosocial and treatment uptake outcomes. 3.2. Methods This pilot study used a single group, mixed-methods, repeated measures design across a 4-week intervention. Results reported here focus on the quantitative findings of the total design. 73 Qualitative findings for this project are reported in Chapter 4. All participants received standard care in hand therapy plus a supplemental mindfulness-based intervention (MBI). The single group design is appropriate for fulfilling the main purpose of this pilot study: feasibility. Specifically, we sought to characterize the expected effect sizes for pain and anxiety of four distinct approaches to meditation in hand therapy patients. This replicated and expanded on the methodology of previous research on mindfulness-based interventions in hand therapy, as discussed in Chapter 1 that demonstrated significantly improved anxiety scores within one visit. Secondly, we evaluated if implementing an MBI had a cumulative effect across a 4-week period on pain catastrophizing in this population. Lastly, we tested a novel outcome for hand therapy: autonomous regulation (i.e., the Intrinsic Motivation Inventory; McAuley, Duncan, & Tammen, 1987). The purpose of this was to assess trends across time on subscales of the Intrinsic Motivation Inventory in order to determine if these are relevant targets for future confirmatory trials using mindfulness-based interventions. Data analysis was conducted using IBM SPSS Statistics for Windows, Version 24.0 (Armonk, NY: IBM Corp). Before research activities began for this study, approval for was obtained through the St. Joseph’s Health and the University of Southern California’s Institutional Review Boards. 3.2.1 Participant Recruitment and Sampling Participants were recruited from the hand therapy clinic at St. Jude Centers for Rehabilitation and Wellness (CRW), which is a community-based outpatient facility connected to the St. Joseph’s Health Network. All recruitment occurred between June 2018 and December 2018. While no power calculations were completed, this study targeted a maximum of 20 individuals as sufficient for accomplishing the feasibility-focused goal of the study. Patients 74 were eligible to participate if they (1) were at least 18 years old, (2) were newly entering hand therapy at St. Jude CRW within the first 3 visits of care; (3) had an acute traumatic injury to the upper extremity (e.g., distal radius fracture, flexor tendon injury and surgical repair, traumatic finger amputation), (4) established a plan of care lasting at least 4 weeks from the time of recruitment, (5) were able to read and write in English, and (6) had access to a web-enabled computer. Consecutive patients were screened for recruitment by their treating hand therapists based on inclusion criteria. If patients were interested, they were asked to provide an email address or phone number to be contacted by a research assistant. Then, a researcher contacted each potential participant individually to schedule a time to meet. The initial meetings occurred just before possible participants’ upcoming hand therapy visits. Participants were given a one- time cash compensation of 30 USD at the first visit. 3.2.2. Intervention All participants received hand therapy as directed by their treating therapist and also a supplemental MBI once a week over 4 weeks. The MBI sessions happened at the clinic just before standard hand therapy appointments. The purpose of this timing of the intervention was to simulate using MBIs as a preparatory activity (AOTA, 2014) for therapy. Preparatory activities, such as use of physical agent modalities or diaphragmatic breathing, are an established category of occupational therapy intervention that facilitates a mind or body state synergistic with receiving the maximum benefit from the treatment that follows. At the first intervention session, a researcher (MH) met with participants individually in a private space at the clinic. During this time, the purpose of the mindfulness meditation and how this related to hand therapy was explained. Then, participants were instructed to use an mp3 75 player and noise-cancelling headphones to complete a 19-minute audio-guided mindfulness meditation. This meditation introduced mindfulness and gave an overview of three possible targets of attention: thoughts, emotions, and bodily sensations. The session ended with a debriefing, and the researcher answered any remaining questions and provided web links to freely available internet-based mindfulness resources that participants could explore at home. At subsequent hand therapy visits, the sequence and location of the MBI was the same but participants completed differing meditations depending on the week as described in Table 3.1. Mindfulness meditations were intentionally disparate in focus, length, and approach to meditation. That is, the meditation in week 1 started with a 19-minute overview of general mindfulness practices focusing attention on bodily sensations, thoughts, and emotions. This meditation also made use of breaks in the audio queues such that listeners could have a chance to practice for a moment in silence. The second week was a 10-minute body scan which was narrated throughout and focused entirely on physical sensations. Week 3 directed the listened to focus toward and then away from difficult or painful physical sensations and was the shortest meditation at 7 minutes. The final week was a loving kindness meditation structured around nurturing positive emotions directed toward others and the self. The full course moves from more general to more specific across the 4 weeks while iterating through different length meditations using more bodily or more emotional foci. The purpose of using a variety of approaches to meditation was in line with piloting what types of meditation hand therapy patients find to be most acceptable, feasible, and or demonstrate the strongest effect size for reducing anxiety and pain. 76 Table 3.1. Mindfulness-Based Intervention Description by Week Description of Intervention Week 1 -Participant education about mindfulness meditation in healthcare. -A one-page handout will be provided summarizing the mindfulness meditation information, and providing a list of free, online resources participants can use at home. -19-minute audio-recording guided meditation titled “Complete Meditation Instructions” which covers topics including: posture, mentality of meditation, guided breathing, enhancing bodily sensations, and awareness of emotional state. -Debriefing about the meditation experience. Week 2 -10-minute audio-recording of a “Body Scan” consisting of meditation to bringing the participants awareness to different physical sensations of the body while doing a breathing relaxation technique. Week 3 -7-minute audio-recording meditation titled “Meditation for Working with Difficulties”. This meditation seeks to promote a sense of curiosity and acceptance about uncomfortable bodily sensations or feelings. Week 4 -10-minute audio-recording meditation titled “Friendly Kindness Meditation”. This meditation practice seeks to encourage participants’ feelings of love for themselves and important other individuals in the participants’ lives. 3.2.3. Data Collection and Measures Data collection used a one-time baseline electronic survey, then repeated measures once a week for 4 weeks. Baseline demographic measures were collected as a part of an existing observational research study (i.e., Chapter 2). Repeated measures data collection consisted of participants filling out a set of brief pen and paper surveys before hand therapy visits (Appendix B.2). Demographic Data. A study-specific survey was used to collect data on participants’ age, sex, race, work status, and previous experience with mindfulness-related activities such as Yoga or Tai Chi. Level of physical functioning was collected using the Upper Limb Functional Index (ULFI; Gabel, Michener, Burkett, & Neller, 2006). Psychosocial Outcomes. Pain was measured using a visual analogue scale such that participants made a mark corresponding to their current pain on a 10 cm line from no pain to 77 worst pain. Anxiety was measured using the state subscale of the State-Trait Anxiety Inventory (STAI; Spielberger, Vagg, Barker, Donham, & Westberry, 1980). The STAI is a 20-item scale that asks participants to rate their agreement with various statements to do with how they are presently feeling (e.g., “I feel calm”) on a 4-point Likert scale. Pain catastrophizing was measured using the Pain Catastrophizing Scale (PCS; Sullivan, Bishop, & Pivik, 1995). This tool measures psychological reactions to pain by asking participants to rate 13 statements (e.g. “I feel I can’t stand it any more.”) on a 4-point Likert scale. Treatment Uptake Outcomes. Four subscales of the Intrinsic Motivation Inventory (IMI; McAuley, Duncan, & Tammen, 1987) were used to measure autonomous regulation for participating in therapy (i.e., interest and enjoyment, perceived competence, value and usefulness, and relatedness). The IMI is intended to be adapted to the specific setting it is being used in by making the wording specific and by including only relevant subscales. Often, this means that each subscale is interpreted separately instead of using a summary score. Therefore, the included subscales were selected because of their relevance to the setting of hand therapy and survey wording was adapted to include the words “my hand therapist”. Also, participants were told to consider their most recent hand therapy session when questions referred to the statement “this activity.” The survey asked participants to rate how true each of a total 28 statements was on a 7-point Likert scale from Not at all true to Very true (e.g., “I enjoyed doing this activity very much”, “I think that doing this activity was useful for my recovery”, “I felt like I could really trust my hand therapist”). Adherence was measured using a version of the Sport Injury Rehabilitation Adherence Scale (SIRAS; Brewer et al., 2000) that was adapted to be self- reported instead of therapist-reported. This adaptation was made to accommodate the self- reported design of data collection. 78 3.2.4 Analysis The primary purpose of this pilot study was to establish feasibility of the MBI and identify relevant outcomes for future MBIs in this setting via a set of preliminary comparative analyses. Within session changes were evaluated using paired t-tests. We compared pretest and posttest scores of anxiety and pain each week to calculate a change score. Cohen’s D was calculated for the observed changes. Interpretation of Cohen’s D followed standard guidelines outlined by Cohen (2013) such that greater than .20 represented a small effect, greater than .50 represented a medium effect, greater than .80 represented a large effect, and greater than 1.30 represented a very large effect. Also, change scores were contextualized comparing them to minimally important differences for clinical populations. For the STAI, a 10-point difference was considered meaningfully different; whereas, a clinical diagnostic threshold of 40 points was used (Corsaletti et al., 2014; Julian, 2011). Meaningfully Important Differences for VAS-pain for individuals having sustained an upper extremity musculoskeletal injury was at least a 1.4 point change out of a 10-point scale (Tashjian, Hung, & Keener, 2017). Across session changes were evaluated using a descriptive analysis of visual trends in treatment uptake (i.e., autonomous regulation and adherence) and pain catastrophizing. We developed plots across time for the intrinsic motivation subscales of interest and enjoyment, value and usefulness, perceived competence, and relatedness. Also, a repeated measures ANOVA was used to evaluate the statistical significance of effects of time on pain catastrophizing and treatment uptake outcomes. 79 3.3. Results A total of 20 individuals were recruited for this study. All participants completed the first week of the intervention and data collection. However, 2 participants dropped out in the course of the 4 weeks. The first dropped out after the first visit because she changed hand therapy providers. The second dropped out after the 3 rd week because she went on vacation and did not return to therapy afterwards. Participants were predominantly middle-aged, female, and white (Table 3.2). Average functional impairment due to injury was moderate as demonstrated by a mean score of 54 on the ULFI leading to 60% of individuals having a change in work status. Whereas, only 25% of individuals had previous experiences with Mindfulness, Yoga, or Tai Chi. Within sessions, statistically significantly improvements were noted in anxiety and pain for each week of meditation (Table 3.3., Figure 3.1.). The largest change in anxiety was a reduction in 9.9 points on the STAI pre/post the week 1 meditation (p < .001). This change represented an effect size of 1.31, meeting the threshold for very large (i.e., greater than 1.30). The smallest change for anxiety was observed in week 4 at a reduction of 4.1 points on the STAI (p < .01) representing a large effect size of .94 (i.e., greater than .80). Changes in pain followed a similar pattern with the largest difference being observed in week one (-.71, p < .01, Cohen’s D = .97) and smallest change being observed in week four (-.21, p < .05, Cohen’s D = .58). 80 Across sessions, data were evaluated initially by plotting the Intrinsic Motivation Inventory (IMI), the SIRAS, and the PCS across the full 4-week period and interpreting visual trends for each (Figure 3.2.). The IMI subscales were centered on their respective means before generating the plots so that visual comparison between them would be easier. Three IMI subscales appeared to be static across the episode of care: Interest and Enjoyment, Value and Usefulness, and Relatedness. Whereas, Perceived Competence appears to have an upward trend. Results of the repeated measures ANOVA showed a null result for the SIRAS, for IMI: Interest and Enjoyment, IMI: Value and Usefulness, and IMI: Relatedness. Within-subject effects showed a significant result across 4 weeks for the Pain Catastrophizing Scale (p = .15) as scores on this scale decreased across time. In this case, the Greenhouse-Geisser test was used due to a violation of the assumption of sphericity. Also, within-subject effects showed a significant result across 4 weeks for the IMI: Perceived Competence (p = .04) as scored increased over time. Table 3.2. Demographic and Descriptive Data (N = 20) Variable [Scale Range] Category Count (Percent) or Mean (SD) Sex Male 3 (15) Female 17 (85) Race Native American 1 (5) Latino 5 (25) White 13 (65) More than one Race 1 (5) Work Status Resulting from Injury Changed 12 (60) Unchanged 8 (40) Experience with Mindfulness, Yoga, or Tai Chi Yes 5 (25) No 15 (75) Age 54.0 (17.8) ULFI [0 – 100] 54.0 (22.1) Note: ULFI = Upper Limb Functional Index 81 Table 3.3. Paired T-Test for Anxiety and Pain by Week Measure Week Mean Change SEM Effect Size p Anxiety 1 -9.9 1.7 1.31 <.001 2 -7.7 1.5 1.22 <.001 3 -5.2 1.3 .90 .001 4 -4.1 1.0 .94 .001 Pain 1 -.71 .16 .97 <.001 2 -.67 .21 .75 .006 3 -.33 .11 .72 .007 4 -.21 .09 .58 .030 Note: Effect Size was calculated using Cohen’s D; Anxiety was measured by the STAI: State subscale; Pain measured by visual analogue scale Figure 3.1. Pain and Anxiety Pre and Post Mindfulness Meditation 82 Pain Catastrophizing Adherence Autonomous Regulation PCS Estimated Marginal Means SIRAS Estimated Marginal Means Centered IMI Estimated Marginal Means Interest and Enjoyment Perceived Competence Value and Usefulness Relatedness A B C Figure 3.2 Marginal Means of Uptake Variables Across 4 Weeks 83 3.4. Discussion This pilot study sought to assess the feasibility and preliminary effects of a 4-week mindfulness-based intervention in hand therapy. It tested the proximal changes in pain and anxiety of four distinct mindfulness meditations and explored the cumulative changes in pain catastrophizing, adherence, and autonomous regulation across four weeks. All four meditations demonstrated significant short-term improvement in pain and anxiety with effect sizes that were large or very large. However, the General Mindfulness Instructions from the first week was the only meditation showing a pre/post differential approaching the minimally important difference for the State-Trait Anxiety Inventory (i.e., 10). Changes in pain, even for the most successful meditations, did not approach the meaningfully important difference threshold (i.e., 1.4). Our result for anxiety replicates and improves on previous work (Roll, Hardison, Vigen, and Black, unpublished) that demonstrated a 5-point reduction after a 20-minute meditation (Figure 1.1.). It appears that improved anxiety is a consistent outcome for mindfulness meditation in hand therapy patients. Interestingly, the short-term effects of the meditations on pain and anxiety seemed to get smaller each week. Visual trends show that over time participants arrived at each session with less and less pain and anxiety overall, so there was less room to drop during the course of the intervention. The different effect sizes may also have been due to different lengths (i.e., varying from 7 to 19 minutes) of the meditations or because the novelty of the intervention wore off by the second half of the study. The repeated measures analysis for adherence, autonomous regulation, and pain catastrophizing yielded two important findings: pain catastrophizing lessened over time while perceived competence for engaging in therapy increased. This indicates 84 that these two outcomes may be important to track in future comparative trials to assess for an improved effect of mindfulness over standard care. Changes in pain failing to meet the minimally important difference (MID) threshold is surprising because mindfulness-based interventions are well known for managing chronic pain. This may have resulted from a floor effect in that pain was generally low, with a maximum score of 2.6, for this group of participants. Therefore, to meet the MID, average pain at posttest would have needed to be as low as 0.3 out of 10 for week 4. This is an unrealistic expectation for patients still receiving therapy. Such a result would correspond with effects of meditation training on healthy individuals addressing experimentally induced pain using electrical stimulation (Zeidan, Gordon, Merchant, & Goolkasian, 2010). However, it may not translate to hand therapy for acute injuries. Future studies can consider limiting inclusion criteria to patients with higher pain at baseline. However, this presents a challenge to feasibility of recruitment. A more meaningful metric that avoids changing inclusion criteria may be to compare rates of residual pain or pain medication use at follow up post the conclusion of the full episode of care. Improved perceived competence for engaging in therapy is a promising result with downstream effects that could in theory include increased participant application of home exercise. Autonomous regulation is associated with increased physical exercise for individuals with chronic pain (Brooks et al., 2018), but specific application of Self-Determination Theory (SDT) in acute rehabilitation has yet to be implemented. Future studies using a comprehensive mindfulness-based intervention might benefit from using other SDT-relevant components layered in with the meditations. 85 Results from this study should be interpreted within the constraints of the setting and design of our project. The study sample size was quite small with 20 individuals maximum. Therefore, our results have limited external validity. Also, this study did not have a control group. So, short-term changes in anxiety and pain may be interwoven with a placebo effect. For long-term changes in pain catastrophizing and perceived competence, it is unknown if the observed effects were reflective of natural healing processes or because of the interventions. Future comparative studies are warranted to determine if the outcomes active across time here can be isolated as effects of a mindfulness intervention. 3.5. Conclusion A 4-week mindfulness-based intervention is feasible within a community-based hand therapy clinic. Six months of recruitment at one clinic yielded 20 participants with a drop-out rate of 10% across the study. This dropout rate was acceptable and expected. However, the recruitment rate was slower than expected. This was perhaps due in part to the inclusion criteria of patients requiring a traumatic injury to participate as well as needing access to a computer and being English speaking. Future studies may consider expanding recruitment criteria for injury category, translating materials into Spanish, and using paper-only versions of the survey in place of an electronic deployment of the survey. Active outcomes during the study included anxiety, pain, pain catastrophizing, and perceived competence for engaging in therapy. Effect size for short-term changes in anxiety and pain are large, but need to be confirmed using a randomized controlled design. Data from this project can be used for power calculations in future work. 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Clin J Pain, 27(8), 724-734. doi: 10.1097/AJP.0b013e3182183c6e Zangi, H. A., Mowinckel, P., Finset, A., Eriksson, L. R., Hoystad, T. O., Lunde, A. K., & Hage, K. B. (20012). A mindfulness-based group intervention to reduce psychological distress and fatigue in patients with inflammatory rheumatic joint disease: a randomized controlled trial. Ann Rheum Dis, 71(6), 911-917. doi: 10.1136/annrheumdis-2011-200351 Zeidan, F., Gordon, N. S., Merchant, J., & Goolkasian, P. (2010). The effects of brief mindfulness meditation training on experimentally induced pain. The Journal of Pain, 11(3), 199-209. 92 CHAPTER 4 Perspectives on recovery and pain management following a mindfulness meditation intervention: A qualitative pilot study of individuals with acute upper extremity injuries 93 4.1. Introduction Psychosocial sequelae, such as anxiety, are well documented symptoms for individuals who have sustained a musculoskeletal injury (Ladds, Redgrave, Hotton, & Lamyman, 2017). However, the literature is sparse concerning manualized interventions to address these symptoms as a part of outpatient treatment. Much of the current scientific understanding of managing psychosocial sequalae comes from working with individuals with chronic injury (e.g., Vranceanu, Barsky, & Ring, 2009) a population in which approximately three-quarters of patients exhibit clinically relevant levels of anxiety. Moreover, psychosocial symptoms may contribute to differential outcomes for individuals with similarly severe injuries (Nota, Bot, Ring, & Kloen, 2015). This effect is especially strong for patients who are seeking functional improvement in order to return to the workforce (Hennigar, Saunders, & Efendov, 2001). Mindfulness-based interventions are one promising means of addressing psychosocial concerns in patients with musculoskeletal disorders. Importantly, mindfulness-based interventions are manualized and well-studied with some emerging discussion supporting application in the area of acute upper extremity rehabilitation. Leading mindfulness researchers such Jon Kabat-Zinn have identified physical and occupational therapy as an area of interest – especially for treatments that are more traditionally body-focused, such as hand therapy (Meili & Kabat-Zinn, 2004). However, acute musculoskeletal conditions are an understudied application of mindfulness-based interventions, and there have yet to be any clinical studies implementing mindfulness-based interventions in hand therapy. Much of the clinical literature on mindfulness- based interventions evaluates therapeutic effects for chronic conditions addressing anxiety (Hoffman, Sawyer, Witt, & Oh, 2010; Vøllestad, Nielsen, & Nielsen, 2012) and chronic pain 94 (Hilton et al., 2016). However, recent laboratory-based studies have demonstrated the potential for mindfulness to improve pain perception in as little as three interventions each lasting twenty minutes (Zeidan, Gordon, Merchant, & Goolkasian, 2010). Given these factors, it is likely that mindfulness-based interventions would be a natural fit for integration within a hand therapy setting; however, it is currently unclear how mindfulness meditation might synergize with traditional hand therapy interventions or how acceptable patients might find this type of intervention. As a first step, this pilot study explored hand therapy patients’ experiences receiving four brief mindfulness meditations as a part of their care. Qualitative methods are appropriate for exploration of emic perspectives on the healthcare environment and have been applied as a means of seeking experience-near feedback after healthcare interventions (Biggerstaff & Thompson, 2008; Gregory, 2010; Smith, 1996). This situates patients as powerful actors in the process of identifying the human experience of new treatments. Thus, this study used qualitative inquiry to explore themes surrounding patients’ experiences of psychosocial symptoms as a component of the process of recovery and to describe patient perceptions mindfulness meditation as a preparatory intervention in hand therapy. 4.2. Methods We used qualitative descriptive methods (Creswell & Poth, 2017) to identify emergent themes surrounding hand therapy patients’ (1) experiences of injury and recovery and (2) experiences of and feedback on receiving a 4-week mindfulness meditation intervention preceding their hand therapy visits. This methodology is framed around “sense-making” of a specific topic or experience and is characterized by interpretation of semi-structured interviews. Generally, we sought to provide a rich and complex perspective of subjective experiences using 95 an iterative, interpretive process. This was accomplished by highlighting multiple, diverse perspectives. Before any research activities began, approval for this project was obtained from the institutional review boards at both St. Joseph’s Health and the University of Southern California, and all participants provided informed consent prior to initiation of any study activities. 4.2.1. Participant Recruitment and Sampling All participants were recruited from an outpatient, community-based hand therapy clinic in the months of June through December of 2018. To be eligible to participate, individuals had to be at least 18 years old, be English speaking, have access to a web-enabled computer, have sustained an acute upper extremity injury (e.g., distal radius fracture, puncture wound, crush injury), and have attended no more than 3 visits with their hand therapist before initiating the study. 4.2.2. Intervention The mindfulness meditation intervention occurred at the hand therapy clinic once a week for four weeks just before participants entered visits to see their hand therapists. This simulated the timing of existing preparatory interventions such as heat or rhythmic breathing used in occupational therapy (AOTA, 2014). Moreover, the goal of the mindfulness intervention was similar to preparatory interventions in that its intention was to facilitate a body and emotional state that was conducive to maximizing the benefit of the subsequent interventions. Each week’s meditation had a different focus and lasted between 7 and 19 minutes. The overarching design across the four weeks was to slowly increase the personal nature and specificity of the 96 meditations, moving from more general and bodily focused content to more specific and emotionally focused content. The meditation for week one was a general mindfulness instruction that discussed the purpose of mindfulness overall leading to a meditative practice focusing attention on physical sensations, thoughts, and emotions. This meditation was the longest at 19 minutes and left several breaks for silence that allowed the participants to independently practice the newly learned techniques. Week two implemented a 10-minute body scan that was guided throughout. It began with calling attention to the feet and moved slowly up the body to the head with guidance for exploring the body with an attitude of acceptance and curiosity. Week 3 was the shortest at 7 minutes and focused on dealing with pain and difficulties. The recording had participants focus on areas of the body that felt good as well as areas of the body that were painful, learning to intentionally direct attention toward and away from problem areas. The final week was a loving kindness meditation that lasted 9 minutes. This meditation was emotionally focused, directing participants to develop and nurture positive feelings for loved ones, acquaintances, and the self. To carry out the meditations, participants were led to a private area of the clinic, given an mp3 player with noise-cancelling headphones, and instructed to listen to the audio recording for the week. After the meditation was over, a researcher collected the equipment and conducted a debrief from the activity with the participant. 4.2.3. Data Collection and Analysis After the four-week mindfulness meditation intervention, a researcher met with each participant to conduct individual semi-structured interviews. Interviews all occurred on the same 97 day as the 4th meditation, but after the participant had finished their hand therapy session for the day. The interviews were carried out in a private space in the hand therapy clinic and designed to last between 30 to 60 minutes. Special care was taken so that the participant felt no expectations for responding to questions affirmatively or negatively. The interviewer reiterated at the beginning of the interview that as a pilot study, we were very interested in knowing whatever answers and feedback participants were willing to share in order to improve future versions of the intervention. The interviewer used a written guide (Appendix D) that covered four main topic areas: (1) experiences of the upper extremity injury, (2) experiences of hand therapy, (3) experiences of mindfulness meditation, and (4) feedback on feasibility and acceptability of the mindfulness as a component of their hand therapy. The interview guide included probes across each of the topic areas, and space was left in the interview process allowing for participants to guide the discussion depth and breadth within each topic. Data were gathered using a high-quality audio recording device and then transcribed verbatim. Coding of the data was done by hand, without the use of assistive software. Themes were identified using an iterative process of codebook development and reapplication to the transcripts. That is, initial codes were sorted, organized, and clustered; then, reapplied to the data. Preliminary themes were selected from these codes because of their salience to patient experiences to the research questions. The final list of themes was identified through a process of discussion and consensus-building with a second researcher. 4.3. Results Seventeen participants were interviewed generating recordings lasting on average 33 minutes and 10 seconds [min – max: 19:26 – 1:00:18] and totaling 525 minutes, 10 seconds. 98 Participants were predominantly female (N = 14), and White (N = 11) or Latino (N = 5) with an average age of 55.1 [18 – 80] (Table 4.1). A minority of participants (N = 4) had previous experience with either mindfulness meditation or related activities such as Yoga or Tai Chi. Participants’ scored a mean of 50.8 on the Upper Limb Functional Index, representing moderate impairment with functional tasks using the upper limbs. Themes emerged in two categories that followed the structure of the interview guide and reflected the two-part purpose of the study. That is, to better understand patient experiences of recovery and to explore an emic perspective on the utility of mindfulness meditation embedded within hand therapy. The first primary theme related to the process of injury leading to recovery, which included 5 subthemes: (1) Initial Reaction: Despair and Disbelief; (2) Symptoms: Functional Limitations; (3) Symptoms: Anxiety and Depression; (4) Hope in the face of a challenging recovery; (5) Hand therapy is necessary but painful. Similarly, the second thematic Table 4.1. Demographic and Descriptive Data (N = 17) Variable [Scale Range] Category Count (Percent) or Mean (SD) Sex Male 3 (17.6) Female 14 (82.4) Race Latino 5 (29.4) White 11 (64.7) More than one Race 1 (5.9) Work Status Resulting from Injury Changed 6 (35.3) Unchanged 11 (64.7) Experience with Mindfulness, Yoga, or Tai Chi Yes 4 (23.5) No 13 (76.4) Age 55.1 (18.9) ULFI [0 – 100] 50.8 (21.9) Note: ULFI = Upper Limb Functional Index 99 category included 5 subthemes each related to experiences of and preferences surrounding the mindfulness meditations: (1) Meditations facilitated a positive mindset for recovery; (2) Acceptance of pain was a tool; (3) Mindfulness was used at home to help with sleep; (4) “I need a bigger wrench”; and (5) Loving kindness meditation “felt like church”. Detailed descriptions of these categories and their subthemes follows. 4.3.1 The Process of Injury Leading to Recovery A common timeline in participants’ narrative of injury and recovery experiences went from the expression of the injury, to a self-imposed delay in seeking medical treatment, to experiences in medical care, to a discussion of symptomology, to being referred to hand therapy (Figure 4.1). Figure 4.1. Overview of Recovery Experiences Across Time 100 Initial Reaction: Despair and Disbelief Participants often expressed disbelief about the serious nature of the injury just after it occurred or reflected on downplaying the symptoms at the time. Many injuries resulted during a leisure or social event that the person was hesitant to leave by going to the hospital. Some participants even waited until the next day for confirmation of some kind that they truly needed a doctor: “Didn’t think anything of it, was kinda just like ‘Oh, go through my day.’ It was 10:30 in the morning so I didn’t really want to leave [the social event] yet.” The eventual seriousness of the injury became apparent later. This may have been enacted by getting the opinion of the neighbor who was a retired nurse or simply waking up the next morning with a large amount of swelling. Participants with more severe or visually obvious injuries both needed and sought immediate medical attention. Personal reactions to a visually apparent or very painful injury were often reflected as despair or negative self-talk: I was trimming tree branches with a chainsaw, and I leaned over like an idiot. And the next thing I know the ground was coming up really fast, and before I had the time to finish thinking, ‘God damn it’ I’m on the ground. These expressions occurred regardless of the overarching hopefulness an individual expressed about their recovery process. Hope in the face of a challenging recovery. While the moment of injury was often discussed with despair or an overall negative framing, the participants also conveyed a sense of hopefulness about the recovery process: So, it was painful, it was uncomfortable, but it wasn't, I never doubted that I was gonna get better. I just thought, oh it's just in a few months from now, six months from now I’m gonna say, "Oh! That's history." In a year from now, I'm gonna say, something I went through, you know? Things you go through. I mean we've been through a lot in our lives. 101 I've been through a lot a lot, so to me it was just one of those hurdles you have to go through. Paired with this expression of hope is the acceptance of recovery being difficult, but not unmanageable. Secondly, there is an acceptance of therapy as being a large, but necessary commitment: “I’ve got so many of ‘em [assigned exercises], it’s almost its own job in a way, but, I really wanna get, I wanna get back to how I was. So, and that’s the only way it’s gonna happen.” Overall, participants reflected strong determination for a long-term outcome that is positive. Hand therapy is necessary but painful One hurdle that many participants identified was that the activities in therapy were sometimes very painful. People were coming in to therapy expecting pain or stated that pain was one of the limiting factors for why they were not completing their home exercise plan. Despite this, there was a sense of acceptance surrounding pain: But, [pain], it’s necessary. You know what I mean? And it’s uh, the ability to really work your way through it, because you, when you’re putting it on yourself, you can obviously put a lot less. I always try to just do as much as I possibly can to the point where, I’m wanting to squirm as much as I would want to here [during therapy], you know? It is difficult to say how pain was managed during the visits themselves, but from a retrospective vantage point, participants seemed to accept pain as a part of the therapeutic process. Symptoms: Functional Limitations Medical treatment just after the injury was described in a content-focused way surrounding the type of treatments received. For example, telling the interviewer simply that they 102 had surgery or listing the hardware used. This was not paired with much emotional reaction or extrapolation. It seemed to be something that participants wanted to gloss over, keep emotional distance from, or perhaps had less significance to their total experience of recovery. In contrast, participants spent a lot of time discussing the functional implications of their injury. More than any other symptom, functional limitations or accommodations to daily activities were the most salient: Even like simple tasks was like, eating or showering or opening a door or going grocery shopping, like I just feel like you have to depend on so much and I feel like I’m a pretty independent person so that was definitely hard. Um, and then just not being able to do the things that I particularly want to do. Like, I do enjoy working out and it just like could not do it. For this individual it was the loss of independence and loss of meaningful leisure activity that had the most impact. For others, it was simply frustrating having to change how you accomplished daily tasks: I’m not particularly uh, ambidextrous at all, so, so just getting dressed, everything was inconvenient. It was, uh I didn’t need to have help or anything once after I got back from the skilled nursing, but everything was sort of a mess. This individual characterized her experiences as not preventing her from completing activities of daily living so much as changing the way that she accomplished them as well as the precision she was able to maintain. Dressing, shopping, and cooking were accomplished, they were just messy, and that was frustrating. Her injury also completely prevented her from playing billiards with her friends, which was a long-standing hobby. Instead she found herself doing more solitary leisure activities like reading. Symptoms: Anxiety and Depression. 103 Two situations tended to lead to a discussion about psychosocial symptomology related to the upper extremity injury. First, when individuals had an extreme change in functional status or second when there was a preexisting history of mental health concerns. The new physical injury seemed to be re-triggering of old fears and psychosocial symptoms, in this case anxiety: I kept thinking, every day I would wake up at a nightmare like I had a, I was gonna get infected [at the site of injury] or you know, just constant, it was a constant. I couldn’t, after I was able to get it wet, I didn’t get it wet for like a week, ‘cause I just didn’t want to get it wet, you know? Like, it’s gonna get infected! Like that’s all I could focus on. It just takes over your mind, you know? The anxiety this individual experienced was quite strong. He expressed that this was a recurrence of similar issues that he had dealt with when he was a child that were now re-activated. Other patients experienced some anxiety or uncertainty concerning re-injury: So, that scares me. I just, I, [the hand therapist] says I’m fine but I feel like I’m so fearful that [the injury] could happen again. Um, so I kinda take it easy or like if I do feel pain, I’m not really sure where it comes from or is this normal or is this the ligament pulling? It may be difficult for patients to differentiate between pain that is supportive of the recovery process and pain that indicates re-injury. This uncertainty caused participants to be cautious during home exercise because they did not have the benefit of feedback and reassurance from the therapist. Lastly, a common complaint was change in sleep patterns or general difficulty with sleep. Participants reported this was the result of a combination of changing roles to do with loss of work, simply the result of being in pain, or worrying about the injury: Literally, I, I would lay there for a few hours awake, and then I would give up and turn the TV back on and then the sun would come up. And, I’d hear my neighbors going to work and then, I’d just get up and go do my normal day. Or what passed for a normal 104 day. For this individual, he was not able to work after sustaining his injury. He mentioned this led to a change in his daily routine such that he spent a lot of time at home, alone, and watching old movies. Also, there was no real impetus for him to keep a regular schedule because he had nowhere to be other than therapy. This reflects a disconnectedness with his life before the injury. 4.3.2. Experiences and Preferences Concerning the Mindfulness Meditations Mindfulness facilitated a positive mindset for recovery. In general, the feedback for the use of mindfulness as a part of hand therapy was positive. The most common effect participants reported was to do with how relaxing the mindfulness meditations was. This result was hard to interpret because the concept of relaxation is a bit vague. When these discussions developed further, it appeared that the relaxation participants were discussing was indicative of a reduction in distracting thoughts or emotions and a calm disposition. This state of relaxation was in contrast to the business of participants’ lives outside of the therapy visit: There are some days where when I came to therapy before doing mindfulness, there would just be a lot of… on my mind or I wasn’t kind of here; ready. I mean I could have just gone through the motions of therapy. Um, but with the mindfulness I felt like it kinda helped me take a second to kinda relax then focus on just myself and why I’m here. And then would go into therapy and I just feel like everything else that was on my mind at the time when I walked in here would kinda just go away and it made me just kinda focus on why I was here and getting my thumb therapy done. The meditations appear to have helped with participants focusing on being prepared for and focusing on the therapy itself. Also, if there were external life events that were distracting, the meditations helped to have patients do a mental reset before beginning with therapy: 105 I’m like coming to like the end of my semester, so like I’m always like coming here really stressed out, and I feel like the mindfulness puts you in a place where you’re like not as stressed out and like you’re more focused on like ‘I’m here for me’ and like not thinking about like ‘Okay, like when am I gonna get out?’ Acceptance of pain was a tool. A majority of participants mentioned that the mindfulness meditations had an immediate relaxing effect, but some related that this did not necessarily translate into the therapy session or perhaps that the effect subsided when the meditation finished. One way that some individuals mentioned the mindfulness did translate into the hand therapy visit was as a way to manage pain during the therapeutic exercise. The meditation from week 3, dealing with difficulties, led participants to address painful sensations by directing attention toward and away from the problem area. This was intended to build the skill of intentionally directing attention toward and away from pain while using awareness of the breath: Just remembering how [the mindfulness meditation recording] told me to breathe and to concentrate and also it’s okay, telling me it’s okay to feel that way [feeling pain]. Whether it was what I’m supposed, supposed to be feeling or not, but it’s okay to feel what, and then just kinda calms me. This strategy for approaching pain seemed to be useful for some participants when getting tissue mobilization or passive stretch. When they’re sitting there working on me and these joints, getting joints that have sat idle for a couple months, hurts when they move again. So, I try and use the mindfulness uh to focus my mind elsewhere while they’re working on it. And, it, it works to a degree. I can’t say that I don’t notice the pain ‘cause I, I sure as hell do. 106 Though distraction is not necessarily a common goal of mindfulness meditation, individuals used the mindfulness techniques they learned to actively focus attention away from uncomfortable sensations during the therapy session. Mindfulness was used at home to aide sleep. One emergent use that participants had for mindfulness was in assisting with sleep. Access to the mindfulness meditation recordings was provided to participants to be used at home if they desired. The main way that people seemed to make use of this was as a part of an evening routine or to address difficulty with sleeping. When everyone is in bed and I’m trying to get to sleep. I would do, I would think of my breathing. And I would think of um, my physical, what am I feeling. That kind of thing. So those first two [meditations] did come to my mind at night. And it would relax me. So, that’s what I used it for. To make better sleep! “I need a bigger wrench.” Though all participants reported positively about the mindfulness meditations, the limited 4-week application was not necessarily enough to address stronger psychosocial symptoms that participants had. One individual mentioned that he had heard of similar strategies for addressing his anxiety, and that a few minutes of meditation was not going to change his overall mental health: I chew it up, like it’s just not, it’s not useless, it’s useless to me. It’s like you know what I mean? I need a bigger wrench for my problem. You know what I mean? Like this is, I’ve heard all this. That’s not stopping what I’m feeling. You know what I mean? This individual had a history of experiencing anxiety from a previous medical procedure. The current injury brought to the surface old feelings of anxiety that were relapsing and remitting. He 107 identified that the mindfulness was useful in the moment, but that it was not a long-term fix for this ongoing issue. Loving kindness meditation “felt like church.” Generally, participants favored the meditations that were more bodily focused. These were more literal in that they guided participants attention to physical sensations as opposed to emotions or thoughts. Some participants reported that the emotional meditations were too abstract. Also, the more emotionally focused aspect of meditation was reminiscent of religious activities like prayer: “I didn’t like the one we did today <referring to the Loving Kindness Meditation>. The emotional, I felt like I was in church, being preached to. [] I didn’t relate to it very well at all.” Conversely, a minority of participants reported that their life experiences with prayer felt similar to the loving kindness meditation in a way that was synergistic. It appears that the bodily focused meditations were more novel and did not carry any religious baggage. Whereas, the more emotionally focused meditations were identified as closer to spiritual practices. This elicited either a positive or negative reaction depending on the person’s life experience. Two participants even mentioned the use of mantras as a part of their Christian prayer practices was similar to their experience of the meditations from the study. One participant cited experiences with managing pain during childbirth as similar to the meditations in that there was a focus on breathing. 4.4. Discussion This study sought to identify themes surrounding the process of recovery after an acute upper extremity injury and to characterize patient experiences of using mindfulness meditation as 108 a part of their hand therapy visits. Key themes surrounding recovery were that there were contrasting attitudes between hope and despair after sustaining an injury that colored how participants understood the narrative of their injury. Symptomology was focused primarily on functional limitations and pain which, when severe, may have led to increased anxiety and depression. Participant characterization of mindfulness meditation was that it assisted in promoting a positive mindset when approaching therapy. Participants may have also used acceptance of pain as a tool during therapeutic activities to reduce suffering and defuse some of the fear of engaging fully in the activities. Considering acceptability of this interventions, it appeared that physically oriented meditations were universally liked with split opinions about the emotionally focused meditations. Participant valuing and experience of religion facilitated the mindfulness meditations. That is, religious individuals found the mind-state they achieved during meditations to be familiar and positive. Conversely, non-religious individuals may have been turned off by the emotionally focused meditations because they perceived them to be too abstract. Participant experiences of their recovery identified symptoms which are valid targets for mindfulness meditations. Specifically, anxiety and depression were either directly discussed or inferred from context in approximately half of the participants in this study. Sleep loss was also discussed by approximately a quarter of participants. Anxiety, depression, and sleep loss are all widely researched uses for mindfulness-based interventions which indicates that this type of intervention would be beneficial if implemented using a well-designed protocol at an appropriate dosage. While the scope of this brief preparatory mindfulness was too small to address long- standing symptoms of anxiety, it was useful in facilitating a positive mindset during the hand therapy visits themselves. The utility of mindfulness in facilitating a positive mindset for 109 treatment was the most universal finding occurring in all but one participant of our sample. Mindfulness techniques also appear to have been used by patients to help with sleep at home and in addressing the painful nature of therapeutic activities. Importantly, general acceptability of the intervention was good, with most participants reporting some positive effect at the time of the intervention or perhaps bridged into the subsequent hand therapy visit. Participants were likely not representative of all hand therapy patients because of the small sample and because this subset of individuals were agreeable to participating in a research project about mindfulness. This may have caused a self-selection bias. Similar to extant literature on mindfulness-based interventions (Hardison & Roll, 2016), our sample was over-represented with middle-aged white women. Perspectives from a sample that is more diverse and includes more men would be valuable to compare with the results presented here. Within our sample, mindfulness meditation was feasible and acceptable for use in hand therapy as a preparatory intervention in hand therapy. Future directions for this line of research will focus on development of a hand therapy specific set of meditations. Based on the findings of this study, meditations used in this way will be more universally acceptable if limited to a bodily focus. Especially relevant will be mindfulness content concerning acceptance of pain during therapy visits and or concerning facilitating rest and sleep while at home. 110 4.5. References American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1- S48 http://dx.doi.org/10.5014/ajot.2014.682006 Biggerstaff, D., & Thompson, A. R. (2008). Interpretative phenomenological analysis (IPA): A qualitative methodology of choice in healthcare research. Qualitative research in psychology, 5(3), 214-224. Creswell, J. W., & Poth, C. N. (2017). Qualitative inquiry and research design: Choosing among five approaches. Sage publications. Gregory, S. (2010). Narrative approaches to healthcare research. International Journal of Therapy and Rehabilitation, 17(12), 630-636. Hennigar, C., Saunders, D., & Efendov, A. (2001). The injured workers survey: Development and critical use of a psychosocial screening tool for patients with hand injuries. Journal of Hand Therapy, 14, 122 – 127. Hilton, L., Hempel, S., Ewing, B. A., Apaydin, E., Xenakis, L., Newberry, S., ... & Maglione, M. A. (2016). Mindfulness meditation for chronic pain: systematic review and meta-analysis. Annals of Behavioral Medicine, 51(2), 199-213. Hofmann, S. G., Sawyer, A. T., Witt, A. A., & Oh, D. (2010). The effect of mindfulness-based therapy on anxiety and depression: A meta-analytic review. Journal of consulting and clinical psychology, 78(2), 169. 111 Ladds, E., Redgrave, N., Hotton, M., & Lamyman, M. (2017). Systematic review: Predicting adverse psychological outcomes after hand trauma. Journal of hand therapy, 30(4), 407- 419. Meili, T., & Kabat-Zinn, J. (2004). The power of the human heart: a story of trauma and recovery and its implications for rehabilitation and healing. Advances in mind-body medicine, 20(1). Nota, S. P. F. T., Bot, A. G. J., Ring, D., & Kloen, P. (2015). Disability and depression after orthopaedic trauma. Injury, 46(2), 207 – 212. http://dx.doi.org/10.1016/j.injury.2014.06.012 Smith, J. A. (1996). Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychology and Health, 11(2), 261- 271. Smith, J. A., & Osborn, M. (2004). Interpretative phenomenological analysis. Doing social Psychology Research, 229-254. Vøllestad, J., Nielsen, M. B., & Nielsen, G. H. (2012). Mindfulness‐and acceptance‐based interventions for anxiety disorders: A systematic review and meta‐analysis. British journal of clinical psychology, 51(3), 239-260. Vranceanu, A. M., Barsky, A., & Ring, D. (2009). Psychosocial aspects of disabling musculoskeletal pain. JBJS, 91(8), 2014-2018. 112 Zeidan, F., Gordon, N. S., Merchant, J., & Goolkasian, P. (2010). The effects of brief mindfulness meditation training on experimentally induced pain. The Journal of Pain, 11(3), 199-209. 113 CHAPTER 5 Discussion and Synthesis 114 5.1. Summary of Key Findings Results of the cross-sectional needs assessment (Chapter 2) illuminated the relationship between injury type and severity with psychosocial needs, identified populations which may benefit most from MBIs, and provided insight to which patient groups found MBIs most acceptable. Meanwhile, the intervention study (Chapter 3) identified if an MBI provided as a preparatory activity is active on the same outcomes as MBIs used in other more well-researched settings. This has aided in determining which outcomes are most salient in this setting while operating under the time constraints of hand therapy. The experimental study also took the first steps at identifying the link between treatment uptake and MBIs. Lastly, the qualitative component of the clinical trial (Chapter 4) allowed for triangulation of outcomes observed in the quantitative analysis, expanded understanding of patient experiences of recovery based on emerging themes, and gave patients a forum for providing feedback to do with feasibility and utility of the intervention. Taken all together, the result of this dissertation provides the necessary pieces to move to the next stage of this line of work: an efficacy trial using a feasible, appropriately dosed, MBI targeting the population in most need, and using the most salient outcomes. Key findings are reported below attending to the initial set of guiding questions for this project: (1) What are the unaddressed psychosocial needs of patients in hand therapy? (2) How is an MBI most feasibly implemented across a full episode of care in this setting? (3) What are patient experiences having taken part in an MBI? (4) What are the preliminary effects of an MBI for proximal outcomes? 115 5.1.1. Conclusions from Chapter 2: The Cross-Sectional Needs Assessment 1. Anxiety was the most prevalent psychosocial symptom of participating hand therapy patients entering care. Moreover, trait mindfulness was negatively correlated with anxiety, depression, and pain catastrophizing in this sample.  Implication: Psychosocial symptoms are a prevalent component of upper extremity injury symptomatology, and the more mindful participants were the less they presented with strong psychosocial symptoms. 2. Patients’ self-reported interest was good for integrating a mindfulness-based intervention as a part of hand therapy care. Only 22.7% of participants said that they were specifically not interested after being given a description of this type of intervention. Being female and having higher functional deficits made participants more likely to be interested in receiving an MBI, but total explained variance from these factors was small (15.2%).  Implication: MBIs would be generally acceptable to hand therapy patients. Though gender and functional deficits appear to have slightly influenced patient preferences for MBIs, there was no singular or large defining feature that determined interest. Patient preferences need to be respected when implementing this type of intervention, but a large majority of individuals were interested when given the choice. 5.1.2. Conclusions from Chapter 3: Quantitative Results from the Mixed-Methods Pilot Study 1. Mindful meditation reduced pain and anxiety for hand therapy patients in the short-term regardless of which type of meditation was used. The General Mindfulness Instructions, lasting 19 minutes, had the strongest effect sizes which approached established minimum important difference thresholds for anxiety but not pain. Of note is that these effects are level III evidence at best, representing changes for a single cohort without a control condition. 116  Implication: Implementing mindfulness meditation before hand therapy visits appears to be a viable preparatory strategy for reducing anxiety. However, utilization of data from a control group will be necessary to further examine effects on these outcomes and determine if these results translate to improved care parameters such as improved function, number of visits, and cost of care. 2. Repeated measures across time in the 4-week intervention showed reduced pain catastrophizing and increased perceived competence for engaging with therapeutic activities. However, there was a null result for changes in adherence and the other 3 subscales of the Intrinsic Motivation Inventory.  Implication: Pain catastrophizing and perceived competence are relevant outcomes to be tracked when implementing a multi-week MBI in hand therapy. Again, comparison to a control condition will be necessary to solidify the cumulative effect of mindfulness on these outcomes across an episode of care. 5.1.3. Conclusions of Chapter 4: Qualitative Results from the Mixed-Methods Pilot Study 1. Three types of symptoms were reported as a part of the recovery process: (a) functional changes, (b) pain, and (c) psychosocial symptoms. Notably, anxiety and depression that sometimes also disrupted sleep patterns were a highly salient component of the experience of injury – especially for those with severe functional deficits or a history of mental health concerns. For some individuals, anxiety also interfered with their ability to complete home exercises or engage fully during therapy times.  Implication: Addressing possible patient anxiety cannot be avoided as a component of care in hand therapy. Screening for psychosocial symptoms, mechanisms for 117 referral to psychology if warranted, and in-session strategies for addressing anxiety are necessary. 2. Patients reported that mindfulness meditation helped them achieve an emotional state that was conducive to fully engaging in therapy (e.g., feeling calm, feeling less distracted by external factors). For some individuals, this feeling bridged into the therapy visit and for others it may have abated once the meditation was over. Also, strategies for directing attention toward and away from painful areas on the body was a useful strategy that patients used during therapeutic activities that were especially painful (e.g., stretching, strengthening, and tissue mobilization). Lastly, unstructured meditation at home was unlikely to be used to facilitate home exercise programs but did naturalistically get used to help with addressing changes in sleep.  Implication: MBIs implemented in hand therapy may take on 3 modes to improve patient experiences during recovery: (a) a preparatory activity designed to help patients become calm and present before therapy visits; (b) a learned coping strategy for managing pain during therapeutic activities; and (c) an at-home activity for helping patients achieve quality sleep. 3. There are limits to patient acceptability of MBIs that must be respected. More emotionally focused meditations were somewhat contentious in that individual beliefs to do with religion seemed to affect whether or not this type of meditation was acceptable to participants.  Implication: Emotionally focused meditations likely do not fit as a part of a general MBI in hand therapy when applied to typical patients who may be either religious or not religious. 118 4. One patient who had stronger psychosocial symptoms reported temporary benefit while doing the meditations, but this did not change his overall wellbeing or manage his anxiety in general.  Implication: A MBI as a part of hand therapy should not substitute for proper psychiatric or psychological management of mental health diagnoses. When using an MBI, hand therapists must continue to screen for psychosocial symptoms that might require an outside referral and maintain good communication with patients’ medical team. 5.2. Synthesis of Knowledge Gained Across Studies While the primary results and conclusions of chapters 2, 3, and 4 stand for themselves, contribution of this work to occupational science at large requires additional depth of discussion. The sum of this work is valuable in two specific areas: (1) occupational science perspectives of adherence and engagement during healthcare encounters and (2) the relationship between mindfulness-based interventions and clinical practice in occupational therapy. In the following sections we explore each of these topics. 5.2.1. Advancing the Discussion in Occupational Science about Adherence and Engagement in Healthcare Characterizing patient adherence and engagement in the therapeutic process was difficult within this project. Notably, adherence was high and static across the 4-week intervention of the mixed-methods experiment. Three out of four subscales for autonomous regulation showed little change across time. The exception being perceived competence that increased across the four weeks. It is unclear if this null result is due to a lack of patient self-insight on adherence and 119 engagement, due to these constructs being stable and high for all patients, due to self-report bias (i.e., participants wanting to save face by telling me they were engaged when they were not), or due to selection bias (only having recruited highly engaged and adherent participants). In any case, results from this project go against existing literature in that these constructs did not bare out as being salient components of recovery or causing differential outcomes in therapy. Furthermore, our current qualitative analysis of patient interviews yielded themes that were conspicuously absent of describing engagement as a construct. This appears to contradict my assertion from the introduction that engagement might be best understood using qualitative methodology. However, engagement related themes may have emerged with more interviews per participant or with a greater sample size. Some small and subtle components of engagement did arise in the interviews. Just not enough to warrant a specific theme. Engagement was noticed mostly through implicit content in the interviews. That is, with little exception, everyone told me they were engaged. However, some participants could run off a whole list of home exercises, told me about how they went to purchase necessary equipment, and recounted specific times that they did the exercises. Other participants had much shorter and more vague responses when asked what type of activities they did for therapy. One potential solution is that engagement may be best measured through direct observation. If our design had included an ethnographic component whereby researchers sat in on patient visits, differences in engagement may have been observed. Another option would be if selected patient visits were video-recorded and behaviors given qualitative codes. Yet, this may be of limited use in future trials evaluating the effect of mindfulness interventions - especially in comparison the more clearly active outcomes in the psychosocial sphere. For now, it is clear that 120 quantitative measurement of engagement and qualitative interviews by themselves are not sufficient to characterize patient engagement in hand therapy. 5.2.2. The State of the Science Backing Mindfulness Interventions in Occupational Therapy Mindfulness is an increasingly popular topic in occupational therapy. Recent literature explored the use of mindful yoga as a treatment for caregivers and for patients with CVA (Hinsey, 2016; Portz, et al., 2018). Mindfulness is also increasing in the educational and professional spheres of occupational therapy. For example, as of 2018 an advanced certificate in mindfulness-based occupational therapy is being offered through San Jose State University which focuses on the use of meditation by occupational therapy practitioners themselves to reduce stress and improve the quality of care they provide. Professional magazines and other gray literature are proposing the use of mindfulness as a treatment in occupational therapy. One article billed mindfulness as “Your New Secret Power” (Salisbury, 2018) citing a recent scoping review (Hardison & Roll, 2016) as evidence. Enthusiasm for this promising intervention is wonderful, but caution is also necessary to avoid invoking confirmation bias born out of zealotry for the cultural phenomenon that mindfulness has become. This dissertation has discussed many applications of mindfulness interventions outside of occupational therapy - many of which have been rigorously evaluated by systematic reviews. The exponentially increasing mindfulness literature base is a fantastic primer inviting researchers to begin the process of translating mindfulness to occupational therapy. However, studies that specifically apply mindfulness interventions in real treatment settings in occupational therapy, let alone physical rehabilitation, are almost non-existent. In fact, the real findings from my own scoping review showed that just two studies out of the many thousands considered had been conducted by occupational therapy practitioners in a real occupational 121 therapy treatment setting (Hardison & Roll, 2016). Not to mention that these two studies represented low-level evidence. The state of the science on mindfulness interventions in occupational therapy is still in its infancy. While it is uncontroversial to use certain specific manualized interventions (e.g., Mindfulness-Based Stress Reduction, Acceptance and Commitment Therapy) to target established outcomes (e.g., anxiety, chronic pain), it is a step too far to assume these effects will translate exactly to any setting or population group. Importantly, even if established effects of mindfulness hold true for occupational therapy, it is unclear if this outperforms standard treatment modalities or leads to improved care parameters. If occupational therapy practitioners want to apply evidence-based interventions framed in mindfulness, they must first seek proper formalized training and be aware of the affordances and constraints of these interventions. The evidence presented in this dissertation is among the first attempts to translate and evaluate mindfulness interventions in occupational therapy treatment settings . It is a long road leading to a properly developed, evidence-based, OT-specific set of MBIs, but the way forward is clear. 5.3. Future Directions for Translating Mindfulness-Based Interventions into Hand Therapy The key findings, implications, and incremental advances in knowledge generated across the studies in this dissertation, provide a clear path forward for this line of work. The immediate next steps are as follows:  Convene a group of stakeholders representing patients, therapists, researchers, mindfulness experts, and clinical administrators. The purpose of this group will be to solicit feedback on the findings of this project, enumerate and address unresolved questions, hone future research questions, and assist in development of new interventions. 122  Develop a hand-therapy-specific mindfulness intervention that incorporates ideas and feedback from the group of stakeholders. Given effects from this pilot work, the intervention is likely include a 20-minute general body scan to be used just before therapy visits, possibly paired with the application of heat. Secondly, an instructional component for mindfully dealing with pain will be implemented by the treating therapist. The focus of this instruction will be around key attitudes identified from Mindfulness- Based Stress Reduction (Kabat-Zinn & Hanh, 2009) training: Non-judging, Patience, Trust, Acceptance, Letting Go These skills will be prompted during therapy – especially during tissue mobilization. Finally, resources will be developed to provide to patients for use at home to help with sleeping via a phone app or website.  Design and implement a randomized controlled trial comparing mindfulness-enhanced hand therapy to standard hand therapy. Given the generalized acceptability across all hand therapy patients, the target population could be any group of consenting patients, but such a trial may yield the best effects if focused on individuals with high anxiety or low trait mindfulness. Relevant outcomes for the study include Anxiety and Pain within each session; Pain Catastrophizing, Perceived Competence for Engaging in Therapy, and Sleep across multiple sessions, and downstream effects on Function, Residual Pain, and Cost of Care across the full treatment. 123 5.4. References Hardison, M. E., & Roll, S. C. (2016). Mindfulness Interventions in Physical Rehabilitation: A Scoping Review. American Journal of Occupational Therapy, 70(3), 7003290030p1. doi:10.5014/ajot.2016.018069 Hinsey, K. M. (2016). Group occupational therapy and yoga: the caregiver experience (Doctoral dissertation, Colorado State University. Libraries). Kabat-Zinn, J., & Hanh, T. N. (2009). Full catastrophe living: Using the wisdom of your body and mind to face stress, pain, and illness. Delta. Portz, J. D., Waddington, E., Atler, K. E., Van Puymbroeck, M., & Schmid, A. A. (2018). Self- management and yoga for older adults with chronic stroke: A mixed-methods study of physical fitness and physical activity. Clinical gerontologist, 41(4), 374-381. Salisbury, K. (2018). Mindfulness and Occupational Therapy: Your New Secret Power. Retrieved from: https://covalentcareers.com/resources/mindfulness-occupational-therapy- new-secret-power/ 124 Appendix A. Outcome Measure Explanation and Validity Demographic Data  Study-Specific Survey: Participants provided their age, gender, race, and ethnicity. Injury Data  Study-Specific Survey: Participants were asked to report the date of their injury, date entering therapy, to describe the injury/diagnosis, mechanism of injury, and to indicate if they had other therapy-relevant medical diagnoses (e.g., diabetes, hypertension).  Visual Analogue Scale for Pain and Function (VASp, VASf): Visual analogue scales for pain and function were used to quickly obtain severity and recovery for these two common patient-reported outcomes. The VASp asks participants to make a mark along a line 10 cm long where 0 cm is equal to no pain, and 10 cm is equal to the worst level of pain. Whereas, the VASf asks participants to make a mark on the line indicating their functional status for completing daily self-care tasks now in comparison to their status previous to being injured.  Upper Limb Functional Index (ULFI; Gabel, Michener, Burkett, & Neller, 2006) is a validated client-reported outcomes questionnaire with good internal consistency (Chronbach’s alpha = .89) that is highly responsive in rehabilitation for musculoskeletal disorders. Participants indicate their level of impairment on a 3-point scale for each of 25 items concerning functional tasks. Score are summed and then calculated as a percentage of upper extremity functional ability an individual experiences. Psychosocial Needs Data  State-Trait Anxiety Inventory (STAI) is a widely used, valid measure of temporary “state” and long-standing “trait” anxiety with high internal consistency (α >.90) (Spielberger, 125 Vagg, Barker, Donham, & Westberry, 1980). Magnitude of anxiety is rated on 20-items with summated scores ranging from 20-80.  The Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, 1977) includes 20 items, and asks participants to rate their depressive symptoms on a Likert scale. The CES-D was developed to be used validly as first screening tool on the general population that ranges in depressive symptoms.  The Injured Workers Survey (IWS; Hennigar, Saunders, & Efendov, 2001) is a 17 item self-report survey used to screen patients with hand injuries for post-traumatic stress disorder. Most of the questions are in a yes or no format, and has been used by clinicians to determine if hand therapy patients need to be referred to psychiatric evaluation and or additional mental health counseling.  Pain Catastrophizing Scale (Sullivan, Bishop, & Pivik, 1995) is a valid, internally consistent (Chronbach’s alpha = .87), and widely used self-assessment for an individual’s reaction to physically painful experiences. It presents 13 statements about how an individual feels about pain (e.g. “I feel I can’t stand it any more.”), and asks participants to rate agreement with these statements on a 4-ponit Likert scale.  Pain Self-Efficacy Scale (PSEQ; Nicholas, 2007) reflects participants’ self-assessment of confidence in performing functional tasks with pain as well as ability to cope with pain. The scale presents 10 items phrased in the first person (e.g., “I can gradually increase my activity level despite the pain”) and asks participants to rate their confidence for completing each item on a 7-poin Likert scale. This scale has demonstrated excellent internal consistency (Chronbach’s alpha = 0.92) and good test-retest reliability (r = .73, p < .001). 126 Mindfulness Data  Study-Specific Survey: Participants were asked to describe their familiarity with mindfulness practices, to list any current mind-body activities (e.g., meditation, yoga, Tai Chi), and rate how useful they feel a mindfulness-based intervention would be for them during therapy.  Five Facet Mindfulness Questionnaire (Baer, Smith, Hopkins, Krietemeyer, & Toney, 2006; Baer et al., 2008) is a common measure of mindfulness which reports 5 subscales (i.e., acting with awareness, non-judging, non-reacting, observing, and describing) by asking participants to rate their agreement from 1-5 for 24-items.  MBI Interest: Patients were given a brief description of an MBI that has been tailored to fit within hand therapy including brief mindful meditations and mindful movement components. Using a Likert scale, patients rated their interest in having this type of intervention as a part of therapy and to rate how helpful they feel this type of intervention would be to them during therapy. Treatment Update Data  Adherence was measured using a modified version of the Sport Injury Rehabilitation Adherecne Scale (SIRAS). Due to the design of our experiment, the SIRAS had to be adjusted to be a self-report measure.  Engagement was measured from patients’ perspectives using the Interest/Enjoyment, Effort, Value/Usefulness, and Relatedness subscales of the Intrinsic Motivation Inventory (IMI; McAuley, Duncan, & Tammen, 1987). The total scale is 45 items, and used to understand participants experience in relationship to a particular event (i.e., in this case therapy visits). The instrument instructions allows for tailoring of the survey questions to 127 meet the specific need of the research. In this case, the participants were directed to consider their most recent therapy visit as the activity of interest and the hand therapist as the individual they were relating with. 128 Appendix B. Participant Surveys Appendix B.1. Cross-sectional Web-based Survey Implemented Via REDCap 129 130 131 132 133 134 135 (State Trait Anxiety Inventory State Subscale sample questions only. Full scale has 20 items) 136 137 138 139 140 141 142 143 144 145 146 Appendix B.2. Paper Survey for Experimental Study (Sample questions of the State Trait Anxiety Inventory State subscale only. The full version of the state subscale has 20 items) 147 State Trait Anxiety Inventory: State Subscale (Sample questions are as above. The full version of the trait subscale has 20 items) 148 149 150 151 Appendix C. Excerpts of Mindfulness Meditations C.1. General Mindfulness Instructions Excerpt below taken from the first minute of “Complete Mindfulness Instructions” from the Mindful Awareness Research Center (MARC) UCLA accessed at: http://marc.ucla.edu/body.cfm?id=22&fr=true “Begin this meditation by finding your meditation posture. Comfortable yet upright. Relaxed, present. You can notice your body, seated here. Noticing the weight and movement and touch. Letting your attention sink into your body. Feeling it as though from the inside. Relaxing. And then exploring. What is here what is true for you. In this moment. Let your attention gently come to rest on your breathing. Your breath is your anchor. And it’s your focus that you can always return to. It’s your home base. So feel the gentle rising and falling of your breath. In your abdomen or chest. Or the in and out sensations located at your nostrils. So we feel one breath after the next. One breath at a time. With a curious attention. What does one breath feel like in this very moment. Now we can also open our attention to a variety of other experiences.” C.2. Body Scan Excerpt below taken from the first minute of “Koru Body Scan” from Koru Mindfulness accessed at: https://korumindfulness.org/guided-meditations/ “Take a seat in a comfy chair or, lie on your back on the floor. Take a deep breath. And let your breathing just be normal and natural. Allow your eyes to close if that feels comfortable to you. 152 Let’s start by bringing our awareness down to our feet. Notice the place your feet make contact with the floor. Notice any other sensations you recognize in your feet. Perhaps you feel the touch of your socks. The coolness of air. Maybe you don’t detect much sensation at all, which is perfectly fine. Just pay attention to your feet. As you watch your feet, see if you can imagine that your breath is moving in and out through the bottoms of your feet. And as you imagine your breath moving in and out through your feet, allow yourself to release any tightness or any tension on any out-breath. And allow yourself to sharpen your focus with each in-breath.” C.3. Meditation for Working with Difficulties Excerpt below taken from “Meditation for Working with Difficulties” from the Mindful Awareness Research Center (MARC) UCLA accessed at: https://www.uclahealth.org/marc/body.cfm?id=22&fr=true “You can use this practice to work with difficult emotions or body sensations. Find a posture that's comfortable to you. And then check inside your body and try to locate a part of your body that feels good to you right now. Pleasant, safe, at ease … And let your attention rest there … Feel it. Sense it… And now if there's something difficult that's happening for you. A difficult emotion, or a physical sensation that's hard. Let your attention go to that… Notice it. Just notice it for one moment. Tap into it. Feel it. Make sure to breathe. And now return your attention back down to that area that feels at ease.” 153 C.4. Friendly Kindness Excerpt below taken from “Guided Friendly Kindness – Beth Sternlieb” through Mindful USC accessed at: https://mindful.usc.edu/new-audio/ “This is a guided, friendly kindness meditation. Simply close your eyes and just place your attention inside your body. And just feel whatever is there. Any sensations. Gently relaxing into the present moment. Perhaps bringing your attention when you’re ready, to the heart region. Just feeling whatever is there right here and right now. Without judging it or comparing it to anything at all. Just being yourself. What we will do during this meditation is offer friendly kindness wishes as an intention to ourselves. While we are doing this, perhaps emotions will arise, and if any emotions arise as we use these phrases, then simply just be with whatever emotion arises. For some people they find it much easier to kind of visualize themselves as a small child during this exercise. If that’s helpful to you then do that. Well, we’ll just begin with some simple phrases: May I be happy, may I be safe, may I be at ease.” 154 Appendix D. Semi-Structured Interview Guide Thank you for taking the time to meet with me today, and to participate in this study! Today we have some time to chat about your experiences over the past 4 weeks, your thoughts on the mindfulness, and to get feedback from you about the research generally. It will take 30 to 60 minutes, and I will be taking an audio recording. I have questions prepared, but if you think of anything you’d like to share that I don’t get a chance to ask about, please let me know. Life Context So, tell me about your hand injury. What were the circumstances that led you here?  How does your hand injury impact your daily life?  How are things different now compared to before your injury? Hand Therapy Experience What do you think about hand therapy?  What happens during a typical session?  How do you feel before the hand therapy sessions? What about afterwards?  What do you think about your hand therapist?  What do you make of the exercises you do in therapy? What about the exercises you do at home? Mindfulness Experiences In the study, you were asked to complete a mindfulness activity before some of your hand therapy sessions. What was your experience of the mindfulness activities?  What did you think of the four different types of mindfulness activities: Body Scan vs Friendly Kindness vs Dealing with Difficulties vs General Mindfulness 155  What is your opinion on mindfulness generally, now that you’ve had some experience with it?  How did you feel during and after the mindfulness activity? In the context of your hand therapy treatment, how did the mindfulness activities affect your experience of each session?  How did you feel about your hand therapy sessions when you had the mindfulness versus when you didn’t have the mindfulness?  OR How, if at all, did you experience of your hand therapy sessions change after starting the mindfulness activities?  In terms of physical experience, how did you feel during the mindfulness exercises? What about after? How, if at all, did the mindfulness activities affect life outside of therapy times?  How often did you try mindfulness activities outside of the study? Sensory Info When you close your eyes and start listening to the mindfulness guide, what sensations did you experience? How did your awareness of your hands change during the mindfulness exercise? When your hand therapist is manipulating/stretching your hand or asking you to do certain movements or exercises, what does it feel like? What sensations do you experience?  How, if at all, did the mindfulness exercises affect those sensations? Feasibility/Acceptability In the future, do you think you would try mindfulness again? In the context of therapy? In the context of daily life? 156  What is your opinion about having mindfulness activities before your hand therapy sessions?  What did you think about the mindfulness activities themselves?  In terms of length, quality, and content, what is your opinion about the mindfulness activities?  How appropriate do you think the mindfulness activities were in the context of hand therapy?  What is your opinion on the type of mindfulness activities that were chosen?

Abstract (if available)

Abstract Mindfulness meditation is the practice of targeted paying attention to thoughts, emotions, and body states. This is done with an attitude of openness, curiosity, and non-judgment. While mindfulness meditation originates from Buddhist practices, it has been adapted into a mind-body intervention in western healthcare. Over the past 30 years a large base of literature including multiple randomized controlled trials and systematic reviews have provided evidence for the effect of mindfulness meditation to improve chronic pain, anxiety, and stress. A subsequent theoretical discussion has developed concerning how mindfulness relates to clinical practice in occupational therapy. Yet, clinical studies translating mindfulness meditation interventions to occupational therapy are all but nonexistent. Such translational work is vital because existing manualized mindfulness meditation interventions are very time-intensive and do not fit within the standard patient encounters occupational therapists provide. It is unclear if a more scaled-back implementation of mindfulness meditation is acceptable to occupational therapy patients, feasible within the setting, and still yields the same benefits as more intensive interventions. ❧ This work takes the first step at establishing the utility of mindfulness meditation as an intervention in occupational therapy. Because occupational therapy practice areas are quite broad, we narrowed our focus by using outpatient hand therapy as the initial case. First, we implemented a cross-sectional needs assessment for 120 hand therapy patients asking about interest in receiving mindfulness meditation as a part of care and also assessed a battery of psychosocial outcomes. Using a forward stepwise logistic regression predicting patient interest, we found that women and individuals with higher self-reported disability were more interested in mindfulness meditation. Also, that patients’ trait mindfulness was correlated negatively with psychosocial symptoms such as anxiety and depression. ❧ Secondly, we implemented an explanatory QUANqual, mixed-methods pilot study providing a group of 20 hand therapy patients with weekly mindfulness meditations for four weeks. The primary goal of this pilot was to assess for feasibility of implementing a mindfulness-based intervention in the setting of hand therapy. We tracked patients’ pain and anxiety before and after the meditations. Also, we tracked patients’ engagement and adherence to treatment across the 4-week period. Each meditation demonstrated a statistically significant reduction in pain and anxiety with the strongest effect size resulting from using a 19-minute general mindfulness instructional audio recording in the first week. While repeated measures analysis showed time-based changes in pain catastrophizing and self-efficacy across 4 weeks. ❧ Individual semi-structured interviews were conducted with the 17 participants who stayed in the study past the 4-week intervention. Audio recordings of these interviews were transcribed verbatim. Using an iterative process of thematic coding we elucidated 5 themes surrounding participant experiences of recovery and 5 themes surrounding the experience of the mindfulness intervention. Emerging from the data, participants commonly navigated initial denial and despair after their injury into a process of hope and recovery. Participants noted the mindfulness meditations were useful in facilitating a positive mindset for therapeutic encounters with their hand therapist by eliciting a state of calm relaxation. ❧ Mindfulness-based interventions in hand therapy have proven to be acceptable to the large majority of patients while being feasible using a more scaled-back approach that fits within the setting. Also, there is preliminary evidence that mindfulness meditations reduce hand therapy patient anxiety before clinical visits and facilitates a positive mindset for recovery. Future development is warranted for a tailored mindfulness intervention in hand therapy leading to the implementation of an efficacy trial.

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Creator Hardison, Mark E. (author)

Core Title Exploring the effects of mindfulness on psychosocial factors for patients receiving hand therapy

School School of Dentistry

Degree Doctor of Philosophy

Degree Program Occupational Science

Publication Date 07/26/2019

Defense Date 05/23/2019

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag adherence,hand therapy,mind-body,mindfulness,mixed-methods,OAI-PMH Harvest,Occupational therapy,Orthopedics,Rehabilitation,therapeutics,upper extremity

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Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Roll, Shawn C. (committee chair), Lawlor, Mary (committee member), Unger, Jennifer (committee member)

Creator Email markehardison@gmail.com,mhardison@salud.unm.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c89-194809

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