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The intersection of oral care experiences, culture, and autism for Black American families: a mixed-methods study

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The intersection of oral care experiences, culture, and autism for Black American families: a mixed-methods study

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Content THE INTERSECTION OF ORAL CARE EXPERIENCES, CULTURE, AND AUTISM FOR BLACK AMERICAN FAMILIES: A MIXED-METHODS STUDY by Dominique Hidalgo Como, EdM, MA, OTR/L A Dissertation Presented to the FACULTY OF THE USC GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree DOCTOR OF PHILOSOPHY (OCCUPATIONAL SCIENCE) August 2022 Copyright 2022 Dominique Hidalgo Como ii DEDICATED TO My mother, Yolanda, for raising me to believe that anything is possible and for encouraging my pursuit of higher education since preschool AND My godchildren – Chloe, Alexa, Stephan, Gianna, Kynsie, and Josephine – whom I hope will reach for the stars and follow their dreams iii Acknowledgements Mentors: First, I would like to thank my mentors and esteemed committee members. I am so grateful I had the opportunity to work with each of you. Without your support and mentorship, I know that I would not have grown to this point. With extreme gratitude, I thank my advisor, Dr. Sharon Cermak, for encouraging me to consider the PhD program when I came to interview for an OTD residency. Without your guidance, expertise, and support, I would not have pursued this degree, let alone this project. Thank you for believing in me and encouraging me to dream bigger. Dr. Leah Stein Duker, thank you for your support and for helping me become a better writer. I always look forward to your valuable critiques – and your digital red pen. I would like to express my deep gratitude to Dr. Mary Lawlor for her encouragement and thoughtful guidance; as a committee member and professor, she has facilitated this academic journey in so many ways. Dr. José Polido, thank you for agreeing to be a part of my committee, providing me with an insight into oral health that I would not have gained on my own, and always trusting my judgment. Dr. Brandi Jones, thank you for answering my unsolicited email and agreeing to be on my committee. You maintain a warm and generous spirit while tackling the oft tough topics of diversity, equity, and inclusion – you are an inspiration. Finally, I would like to thank my unofficial mentor, Dr. Lucía Floríndez. From the first day we met, and you shared your experience in the PhD program, I knew you would always fight for me. Your support has been immense, and I know I would not have completed this without you. Latina #2 to Latina #1 – I thank you! LOCA-BOCA USC Chan Division of Occupational Science and Occupational Therapy Faculty and Staff: I would like to thank all of the outstanding faculty and staff I had the opportunity to iv engage with and learn from throughout my time in the division. Your support and encouragement have been greatly appreciated. SADE Lab, CHLA Dental Clinic & USC UCEDD: I am privileged to have spent so many hours with the clinicians, staff members, residents, assistants, and volunteers in the SADE Lab, the CHLA Dental Clinic, and the USC UCEDD, all of which have helped to shape me as a researcher. I am so thankful to have had the opportunity to get to know so many of you, work with you, and laugh with you. I would like to offer a special thank you to Annie Hong, who taught me almost everything I know about the administration of a research project. Family & Friends: I am forever indebted to my family for their unconditional love and support; whether offering an encouraging word or sharing in my dreams, your belief in me has helped me get here. To my friends, thank you for your constant support and laughter, which kept me going through the tough times. Also, most of all, I would like to thank my husband, Tan, for agreeing to embark on this adventure with me. You always encouraged me to reach for the stars and cheered my accomplishments while also helping me to stay grounded. I could not have done this without you! Funding Sources: This study was funded in part by the National Institute of Dental and Craniofacial Research (U01DE024978-04S2; 1F31DE030006-02), the Dr. Gary Kielhofner Doctoral Research Scholarship in Occupational Therapy funded by the American Occupational Therapy Foundation, the California Foundation for Occupational Therapy, and the University of Southern California, Mrs. T.H. Chan Division of Occupational Science and Occupational Therapy. All of whom I would like to thank for their generous support. v Last but not least, I would like to thank all of the families – who agreed to participate in this project, gave their time, and trusted me to share their stories – without whom this dissertation would not exist. Language Use: Language use is an essential consideration as we attempt to move towards a more equitable global society. The language we use to describe ourselves and others can have affirming or stigmatizing impacts on identity, perceived value, and societal acceptance. Our responsibility is to use inclusive language that affirms the individual and the larger community while also acknowledging that no group is a monolith and that every society consists of individuals with their own lived experiences and histories. Language is ever-changing, and we must be cognizant of our intent and impact. There is no universal agreement about the terms used to describe the members of the population participating in this study. Some families described themselves as Black Americans, while others described themselves as African Americans. Similarly, some caregivers described their children as autistic (identity first), while others described having a child with autism (person first). However, in my training, person-first language has been stressed. Throughout this dissertation, I will use the terms Black American and African American interchangeably. I will also use person first and identity-first language interchangeably primarily based on parents’ use. I intend no harm with these terms; I hope to be in concordance with and affirm the families’ identities. vi Table of Contents Dedication .................................................................................................................................. ii Acknowledgements ................................................................................................................... iii List of Tables .............................................................................................................................. x List of Figures ........................................................................................................................... xi Abstract .................................................................................................................................... xii CHAPTER 1: Introduction.......................................................................................................... 1 Background ................................................................................................................................ 1 Literature Review ....................................................................................................................... 5 Health Services ....................................................................................................................... 7 Coverage............................................................................................................................. 7 Quality of Care ................................................................................................................... 8 Provider Availability ........................................................................................................... 8 Culturally Responsive Care ................................................................................................. 9 Biological Factors ................................................................................................................. 10 Disability Status (autism spectrum disorder) ..................................................................... 10 Fear and Anxiety ............................................................................................................... 10 Genetic Factors ................................................................................................................. 11 Physical Environment ........................................................................................................... 11 Geography – Rural/Urban ................................................................................................. 11 Water Fluoridation ............................................................................................................ 12 Food Access...................................................................................................................... 12 Social Environment............................................................................................................... 13 Support Systems ............................................................................................................... 13 Socioeconomic Status ....................................................................................................... 14 Individual Factors ................................................................................................................. 14 Health Literacy ................................................................................................................. 14 Parenting Styles/Traits ...................................................................................................... 15 Past Behaviors .................................................................................................................. 15 Appearance ....................................................................................................................... 16 Specific Aims ........................................................................................................................... 17 CHAPTER 2: Methodology ...................................................................................................... 19 Theoretical Framework ............................................................................................................. 19 Occupational Science Concepts ............................................................................................ 19 Core Concept: Engagement ............................................................................................... 19 vii Core Concept: Occupational Justice .................................................................................. 20 Behavior Change .................................................................................................................. 22 Conceptual Framework ............................................................................................................. 22 Health Belief Model.............................................................................................................. 22 Anderson Healthcare Utilization Model ................................................................................ 23 National Institute of Minority Health and Health Disparities Research Framework ............... 23 Project Conceptual Framework ............................................................................................. 24 Methods.................................................................................................................................... 26 Overview of Design .............................................................................................................. 26 Aim 1 – Methodology (Survey) ............................................................................................ 28 A1 Participants ................................................................................................................. 28 A1 Procedures................................................................................................................... 29 A1 Measurement ............................................................................................................... 29 A1 Analysis ...................................................................................................................... 31 Aim 2 – Methodology (Interview) ......................................................................................... 33 A2 Participants ................................................................................................................. 33 A2 Procedures................................................................................................................... 33 A2 Analysis ...................................................................................................................... 34 Aim 3 – Methodology (Recommendations) ........................................................................... 35 A3 Recommendations ....................................................................................................... 35 CHAPTER 3: Oral Care Knowledge, Attitudes, and Practices of African American Caregivers of Children with and without Autism ........................................................................................ 36 Introduction .............................................................................................................................. 36 Methods.................................................................................................................................... 38 Participants ........................................................................................................................... 38 Procedures ............................................................................................................................ 38 Social Responsiveness Scale, Second Edition (SRS-2) ...................................................... 39 Oral Health Questionnaire (OHQ) ..................................................................................... 39 Analysis ................................................................................................................................ 40 Results ...................................................................................................................................... 41 Demographic Characteristics ................................................................................................ 41 SRS-2 ................................................................................................................................... 42 Oral Health Questionnaire (OHQ) ......................................................................................... 42 Oral Health Knowledge [Knowledge] ............................................................................... 42 Dental and Oral Health Attitudes [Attitudes] ..................................................................... 43 Parent and Child in-home Oral Care Health Practices [Practices] ...................................... 44 Access to Dental Care/Treatment [Access] ........................................................................ 45 Relationships Between Aspects of Oral Care ..................................................................... 46 Ongoing Needs ................................................................................................................. 47 Discussion ................................................................................................................................ 47 viii Limitations ........................................................................................................................... 52 Conclusion ............................................................................................................................... 52 CHAPTER 4: Oral Health Barriers for African American Caregivers of Children with Autism . 58 Introduction .............................................................................................................................. 58 Methods.................................................................................................................................... 60 Participants ........................................................................................................................... 61 Procedures ............................................................................................................................ 61 Data Analysis ....................................................................................................................... 62 Results ...................................................................................................................................... 63 Difficulty of Maintaining Good Oral Health Practices ........................................................... 63 Challenges with Access to Care and Resources ..................................................................... 67 Poor Patient-Provider Relationships ...................................................................................... 70 Discussion ................................................................................................................................ 74 Limitations ........................................................................................................................... 77 Conclusion ............................................................................................................................... 78 CHAPTER 5: Improving Oral Care for Children with Autism: Recommendations from African American Parents to Other Parents and Dental Professionals .................................................... 80 Introduction .............................................................................................................................. 80 Methods.................................................................................................................................... 81 Enhancing Oral Care: Recommendations from African American Caregivers ........................... 81 Recommendations for Other Caregivers ................................................................................ 81 Actively Pursue Care ........................................................................................................ 81 Partner with Dental Practitioners and the Team ................................................................. 83 Offer Grace ....................................................................................................................... 85 Recommendations for Dental Professionals .......................................................................... 86 Increase Awareness and Training ...................................................................................... 86 Be Patient and Adaptable .................................................................................................. 88 Utilize Media to Facilitate Oral Health Education ............................................................. 89 Supplemental Resources ........................................................................................................... 91 Conclusion ............................................................................................................................... 92 CHAPTER 6: Conclusion ......................................................................................................... 94 Key Findings from Chapter 3 ................................................................................................ 94 Key Findings from Chapter 4 ................................................................................................ 95 Key Findings from Chapter 5 ................................................................................................ 96 In Summary .......................................................................................................................... 98 Limitations ........................................................................................................................... 99 Final Thoughts ...................................................................................................................... 99 ix References .............................................................................................................................. 101 Appendix A: USC IRB Approval Letter .................................................................................. 125 Appendix B: Social Responsiveness Scale, 2 nd Edition (Sample) ............................................ 126 Appendix C: Oral Health Questionnaire (Sample) ................................................................... 127 Appendix D: Semi Structured Interview Guide ....................................................................... 130 Appendix E: Joint Display ...................................................................................................... 132 Appendix F: Supplemental Resources (Examples) .................................................................. 136 x List of Tables Chapter 3 Table 1: Demographics ............................................................................................................. 53 Table 2: Significant Differences in Individual Items of Oral Care Knowledge of Families with Children with and without ASD ................................................................................................ 55 Table 3: Significant Differences in Individual Items of Oral Care Attitudes of Families with Children with and without ASD ................................................................................................ 56 Table 4: Significant Differences in Individual Items of Oral Care Practices of Families with Children with and without ASD ................................................................................................ 57 Chapter 4 Table 1: Interview Participant Characteristics ........................................................................... 79 xi List of Figures Chapter 2 Figure 1: Conceptual Framework .............................................................................................. 25 Figure 2: Procedural Design...................................................................................................... 27 Figure 3: Sequence of Phases in the Project .............................................................................. 28 xii Abstract Oral health is a vital component of overall health, impacting quality of life. Targeting oral health is critical to improving the overall health of underserved populations. Children from underserved minoritized populations, such as African Americans, or those with special health care needs, including children with autism spectrum disorder (ASD; autism), are at even greater risk for experiencing oral health disparities. This project aims to determine the factors that impact oral care for African American children with and without autism through a mixed-method convergent parallel design. Black/African American caregivers of children aged 4 to 14 years with a diagnosis of ASD (n=65) and those without ASD [(non-ASD); n=60] participated in a survey. Eleven Black/African American caregivers of children with autism participated in qualitative interviews. Participants were recruited from social media, Research Match, and lists of individuals who enrolled in another study and agreed to be contacted about future research opportunities. Results from the survey indicated that caregivers demonstrated some basic knowledge of oral health. Caregivers of children with autism answered significantly less correctly. Most respondents reported that they would like to increase their oral health knowledge. Caregivers care about oral health as much as general health. Dental fear and anxiety affect more than half of the participants. During the interviews, Black American caregivers of children with autism shared that maintaining good oral health practices, access to care and resources, and poor patient- provider relationships were barriers that affect the oral health experiences. They also offered recommendations to other parents (i.e., actively pursue care, partner with dental practitioners, and offer grace) and suggested that dental professionals increase awareness and training, be patient and adaptable, and utilize media to facilitate oral health education. xiii This dissertation explored engagement and access to routine occupations for underserved and under-researched groups. While many barriers to care were identified, additional research exploring this topic is crucial to the goal of eliminating disparity and moving towards health equity. Occupational scientists have a perspective on occupation that can aid in the creation and implementation of distinct interventions which may positively impact oral health for Black American families with children with and without autism. 1 CHAPTER 1: Introduction Background Oral health is a vital component of overall health, which impacts the quality of life, both directly and indirectly, through fundamental oral functions (e.g., chewing and swallowing) and through the ability to confidently express emotions (e.g., smiling) and engage with others (US Department of Health and Human Services [US DHHS], 2021a). According to Oral Health in America, the Surgeon General’s report focused on oral health needs exclusively - there is “a silent epidemic of dental and oral diseases … a burden of diseases that restricts activities...” (US DHHS, 2000, p.17). Unfortunately, oral health is one of the most common unmet health needs in the United States (Flores et al., 2016; Isong et al., 2012; Murthy, 2016). The prevalence of children in the US who experience tooth decay or cavities exceeds 55%, with between 3.3% and 20.1% of caries remaining untreated (Centers for Disease Control [CDC]b, 2019). Children from underserved minoritized populations, such as African Americans, or those with special health care needs, including children with autism spectrum disorder (ASD; autism), are at even greater risk for experiencing oral health disparities (i.e., increased for caries, oral-related chronic disease, poorer overall oral health) (Dye et al., 2012; Dye & Thornton-Evans, 2010; Fisher- Owens et al., 2013; Murthy, 2016). Many factors serve as barriers to oral health for African American children, including familial, social, and structural elements (Como et al., 2019). Structural obstacles include limited access to specialty services, decreased awareness of available public services, and cost- prohibitive pricing for dental services (Fisher-Owens et al., 2013). These disparities have also been linked to additional factors, such as low income or education level, race, language discordance, or disability-related treatment difficulties (Fisher-Owens et al., 2013; Floríndez et 2 al., 2019; US DHHS, 2021a). Despite significantly increased access to care and high rates of public insurance coverage among minorities, African American children and adolescents continue to have higher levels of dental caries and a significantly higher prevalence of untreated caries compared to Caucasian children (Calderon & Mallory, 2014; Dye et al., 2012; National Institute of Dental and Craniofacial Research [NIDCR], 2018). Poor oral health is common for people with intellectual and developmental disabilities such as autism (Koritsas & Iacono, 2011; da Silva et al., 2017). Many children with autism encounter significant barriers to receiving good oral care. Practicing oral care routines, whether in the home or at the dental clinic, may be challenging for families due to impairments in communication, sensory processing sensitivities, uncooperative behaviors, restrictive eating habits, and dental fear and anxiety (Alshihri et al., 2020; Friedlander et al., 2006; Koritsas & Iacono, 2011; Marshall et al., 2010; Stein et al., 2012). This elevated risk may partly result from difficulties in implementing oral care practices, like toothbrushing and flossing. Toothbrushing twice a day, as commonly recommended, is only completed by about half of children with autism, and up to 61% of parents of children with autism report that toothbrushing, even once a day, is difficult (Charles, 2010; Marshall et al., 2010; Stein et al., 2012; Teste et al., 2021). Sensory sensitivities may exacerbate this challenge to the taste or texture of toothpaste or the tactile sensation of the toothbrush bristles in the mouth (Stein et al., 2012). In addition, parents/caregivers of children with autism also report limited access to dental practitioners who are both qualified and willing to treat their child (Newacheck et al., 2002; Weil & Inglehart, 2012). As a result, many children with autism require sedation or general anesthesia for routine dental procedures. 3 The rates of untreated tooth decay in primary teeth for children aged 2-11 years were highest among minorities, including approximately 27% for African American children (NIDCR, 2018). Additionally, about four million children go without needed dental care services because their families cannot afford them (Bloom et al., 2013; National Center for Health Statistics, 2022). Aside from factors related to access to care resulting from language barriers and finances, other reasons for disparities in caries and tooth decay prevalence in African American children are unclear. It has been suggested that African American parents might have limited knowledge about risk factors and that cultural beliefs and norms may influence oral health practices (e.g., in- home care, maintaining regular dental visits) (Baskarados, 2018; Dodd et al., 2014; Kelesidis, 2014). For example, belonging to an ethnic group with deeply held predispositions about preventive health, a preference for cultural remedies or mistrust of healthcare professionals are routes through which cultural issues can affect oral care (Floríndez et al., 2019; Gamble, 1997; Hilton et al., 2007; Tajeu et al., 2015). Further, African American children with ASD may face unique and largely unresearched oral challenges. For example, African American children are often diagnosed with autism at a later age than their peers and, as a result, usually do not receive services promptly (Mandell et al., 2002; Mandell et al., 2009). This delays their ability to engage in preventative treatments (e.g., desensitization) and may contribute to poor oral health. Oral care disparities persist, and limited research exists regarding oral care in disadvantaged populations. Public health agencies have attempted to increase access to services by situating programs within the community, such as school-based programs where a dental professional applies a sealant to children’s teeth to protect against cavities (CDC, 2021c). These programs are typically housed in communities with many vulnerable children at high risk for developing 4 caries, thereby increasing the reach of dental practitioners in the community and acting as a cost- saving measure by reducing the need for emergency dental treatments (CDC, 2021b). Another program in which fluoride is added to the public water system has been touted as one of the significant advancements in evidence-based strategies to combat tooth decay (CDC, 2021b). According to the CDC (2021d), fluoridation is responsible for decreasing caries in adults and children by 25%. Several organizations support fluoride and community-based fluoridation, including the World Health Organization (WHO, 2022). However, health disparities persist despite these policies, campaigns, and interventions. Oral health is a leading health indicator in Healthy People 2030, with the goal of improving oral health by increasing access to dental care services (US DHHS, 2022). Targeting oral health is critical to improving the overall health of underserved populations, as poor oral health has been linked to heart disease, stroke, and diabetic complications and overwhelmingly impacts African Americans (Murthy, 2016). The health of African Americans is often affected by increased risk factors and higher incidence, morbidity, and mortality rates of many chronic diseases and conditions when compared with White Americans (CDC, 2005; Noonan et al., 2016). African Americans had 40% higher rates for all-cause deaths, in all age groups less than 65 years, for heart disease, stroke, and diabetes compared to White Americans (Cunningham et al., 2017). Preventive approaches to oral health have primarily hinged on policy implementation and population-level interventions (e.g., water fluoridation). Given the heterogeneity of the Autism population and research that indicates that African American families prefer interventions that allow autonomy, a culturally tailored, individualized, and multi-focused intervention has great potential to reduce disparities among African Americans and children with ASD (Adams et al., 5 2012). Several health promotion interventions targeting African American families have shown to improve children’s likelihood of lifestyle behavioral changes. Multilevel community-based health promotion programs have addressed a myriad of topics ranging from obesity to HIV prevention to at-risk behavior reduction (i.e., drug and alcohol use), with beneficial effects (Brody et al., 2004; Carney et al., 2016; Dittus et al., 2004; Lindsay et al., 2006; Waters et al., 2017). The aforementioned projects provide support for a program targeting African American families’ oral health knowledge and practices. The significance of the to-be-designed community-based intervention is heightened by its potentially high level of scalability, as it can be delivered via various methods, including the telephone, the internet, or a mobile app. Further, long-term extension of the intervention can be tailored to address specific areas of need for rural populations, those with different special health care needs, and other minority groups. Literature Review Health Equity is often described as the fair opportunity to achieve the highest level of health potential and not be disadvantaged based on social position (American Public Health Association, 2019; CDC, 2018; Institute for Healthcare Improvement, 2018). The crux of this argument stems from the core belief that health is essential and any differences between groups that can be remedied, is an inequity (WHO, 2018). Health inequities are frequently the result of “systematic and unjust distribution” (Brennan Ramirez et al., 2008, p.6). Furthermore, there is often an underlying power differential, whether that be the result of political, economic, or social factors. These inequities lead to increased risks for the type, duration, severity, and impact of disease and disability, often resulting in higher mortality rates. The realization and comprehension of these differences have led to increased attention and focus worldwide on the populations that are underserved. Groups impacted by health inequities are often classified by 6 race, ethnicity, gender, sexual orientation, education, income, geographic location, and disability. If health is a basic right, then the elimination of inequities for those who are disadvantaged is the responsibility of the society-at-large. In the United States, the public health community has attempted to identify collective health priorities. Since the 1979 report, Healthy People: The Surgeon General’s Report on Health Promotion and Disease Prevention, a national, multidisciplinary team of experts has established the objectives, goals, and benchmarks for health education, promotion, and prevention - referred to as Healthy People (US DHHS, 2021b). One of the overarching goals of this initiative is to address health disparities. Health disparities are the differences in groups’ health status that significantly affect disadvantaged populations (National Institute of Minority Health and Health Disparities [NIMHD], 2021). With each iteration of Healthy People, the goal has progressed from the reduction of- to the elimination of- health disparities in the United States (US DHHS, 2022). Disparities are not the result of a single cause; there are often several interconnected and complex reasons why they exist. It is a combination of income, education level, race, disability status, insurance status, and other contextual factors (Fisher-Owens et al., 2013; National Academies of Sciences, Engineering, and Medicine, 2017). To this point, several approaches have been taken to address these disparities with varying degrees of achievement. Social determinants of health, the “conditions in the places where people live, learn, work, and play,” have been acknowledged as contributors to these inequities (CDC, 2018). Based on a review of the literature related to oral health for African Americans, five key determinant areas, adapted from the domains of influence identified by the NIMHD (i.e., health 7 services, biological factors, physical environment, social environment, individual factors), emerged as factors which contribute to oral health outcomes. Health Services Coverage One of the top strategies for reducing oral health disparities in the United States has been to increase access to dental services through insurance and other low-cost discount plans. For instance, the funding of preventative services has expanded for Medicaid coverage plans, whereby any state must include dental benefits that provide Children’s Health Insurance Program (CHIP) coverage through a Medicaid expansion program (Centers for Medicare and Medicaid, n.d.). Evidence suggests that a direct outcome of this increase in coverage is that access to care has significantly increased; interestingly, the rates of public insurance coverage are most significant among minorities (Flores et al., 2008). For example, public dental insurance coverage has increased from 31% to 62% over the last two decades (Isong et al., 2012). Flores and Lin (2013) found that some disparities decreased with improved access to preventive dental services, such as completing a routine dental visit in the previous year. For example, preventative dental visits increased from 22% to 35% for non-Hispanic Black children (Wei et al., 2018). However, although the availability of insurance has increased, research indicates that it remains underutilized by the African American community. Nearly half of the African American parent participants in a cross-sectional study were unaware that their children were eligible for Medicaid/CHIP (Flores et al., 2016). Even when parents knew about Medicaid resources, their children were more likely to have longer intervals between dental visits (Pourat & Finocchio, 2010). Evidence suggests that having private insurance did not lead to better outcomes. Children of families with private insurance showed an increase in preventative 8 procedures until the age of 9 years, when the use of preventive procedures began to decrease. Even when controlling for insurance, compared to their Caucasian peers, African American children received fewer preventative procedures across all age groups. The argument posited is that this change may result from complex interactions between race and other factors such as parental perception of oral health needs, parental education level, and overall health literacy (Bhagavatula et al., 2014). Quality of Care In a study of African American adults that examined dental fears, patients reported concerns about the poor quality of care they might receive (Siegel et al., 2012). The researchers attributed these concerns to previous experiences patients had with dentists who discounted their feelings of pain and discomfort. Some participants additionally expressed fears that dentists might not adequately clean and sterilize the instruments. In a study of African American parents, the authors reported that caregivers are often dissatisfied with the oral care their children receive, and this dissatisfaction may prevent them from seeking additional services (Flores & Lin, 2013). This may be because parents of minority children were significantly more likely to say that their health practitioners do not spend enough time with their child compared to Caucasian parents (Flores & Lin, 2013). This impacts the perceived quality of those interpersonal relationships and results in African American parents being more likely to report experiencing unmet oral care needs (Fisher-Owens et al., 2013). Provider Availability Patient-provider relationships are critical to health experiences; in a study of dental students’ attitudes about working with underserved populations, researchers found that they were less inclined to work with underserved populations from the beginning of their programs to the 9 end of their dental school training (Habibian et al., 2011). There are likely several reasons why this may be the case. The recognition that there might be challenges in working with underserved populations or the increasing demands of ‘real world’ expectations (e.g., tuition repayment), regardless of the cause, serves as a barrier. The lack of dental clinics in some communities and the scarcity of dental practitioners matriculating through the educational pipeline make participation in preventative dental care a very challenging prospect for many groups (Behrens & Lear, 2011; Lau et al., 2012). Culturally Responsive Care African Americans have a tenuous history with the medical community and, at times, display evidence of mistrust for medical professionals, which can lead to an avoidance of medical services (Gamble, 1997; Tajeu et al., 2015). A qualitative study examining the cultural factors of caregivers on their child’s oral health care found that older African American caregivers cited institutional racism as a barrier to care (Hilton et al., 2007). Race-concordance may be a way to overcome this. For example, our tendency to bond with those who are similar (i.e., homophily) may help with the facilitation of patient-provider relationships. However, this may be a challenge, as African Americans comprise 12.4% of the population while only 3.8% of dentists self-identified as African American (American Dental Association, 2021). Historical structural barriers that prevented dentists of color from participating fully in dentistry have likely contributed to the underrepresentation of dental practitioners of color (National Dental Association, n.d.). 10 Biological Factors Disability Status (autism spectrum disorder) Literature shows that individuals with autism face significant challenges often associated with the symptomology of the diagnosis. In a study examining the oral care challenges of children with autism, the authors found that due to their extreme dependence on routine, the children experienced a great deal of stress when they were required to do things outside of their typical routine, such as attending a dental appointment (Stein et al., 2012). Additionally, due to limitations in communication, behavior management techniques utilized in dental clinics may not be as effective in this population, which leads to a significantly higher percentage of those with autism requiring general anesthesia to complete preventative dental treatments (Loo et al., 2008; Weil & Inglehart, 2012). Furthermore, children with autism often demonstrate a greater prevalence of sensory over-responsivity and sensory sensitivities to the lights, sounds, sensations, and odors that can negatively impact oral care in the home and the clinic (Cuvo et al., 2010; Friedlander et al., 2006; Stein et al., 2013). Fear and Anxiety Evidence suggests that one of the factors influencing a child’s behavior in the dental clinic is their level of fear and anxiety (Klingberg & Broberg, 2007). Dental anxiety in adult samples is around 15%, while the estimated prevalence for children is more variable and ranges from 5% to 20% (Locker et al., 1999; Seligman et al., 2017). Some argue that children who experience dental anxiety are likely influenced by their parents, while others say that the child’s own lived experience impacts their dental fears (Themessl-Huber et al., 2010; Townsend & Wells, 2019). In a study of African American mothers with preschool-age children, researchers found that parents’ dental anxiety did not cause their child to have dental anxiety; it was the 11 parent’s dental utilization. In other words, mothers with increased dental anxiety utilized the dentist less, and as a result, their child experienced a delay in accessing the dentist. This likely increased their child’s fear and anxiety because their initial visits often required more invasive procedures. Genetic Factors There is some evidence that genetic factors contribute to dental caries; however, most of the research on caries-related genes has been conducted on Caucasians. In a pilot study that performed a genome-wide association study on African American children and adults, the researchers did not find any significant associations. However, promising data requires additional study (Orlova et al., 2019). Physical Environment Geography – Rural/Urban Based on the literature, geographic location is associated with inconsistent preventative dental service use (Eisen et al., 2015; Fisher-Owens et al., 2013). In rural communities, access is limited by the number of trained dental professionals in the area and the transportation options available for reaching those dental clinics. In rural Kentucky, researchers found that African American children aged 6-15 years were more likely to have untreated caries, associated with the lack of oral health resources (i.e., dental clinics) in their immediate area (Dawkins et al., 2013). However, this is not limited to rural environments. Even in urban areas where the concentration of dental practitioners is higher, access is impacted because available resources may not be apparent to those who need them (Flores et al., 2016). 12 Water Fluoridation Community-based water fluoridation has been touted as one of the significant advancements in evidence-based strategy to combat tooth decay and is responsible for decreasing one-quarter of caries in adults and children (CDC, 2021d). A level of 0.7 milligrams per liter of fluoride in drinking water is recommended to prevent tooth decay (US DHHS, 2000). However, according to a review of the CDC My Water’s Fluoride website, a resource for people to learn about the fluoride levels in their community’s drinking water, water fluoridation levels vary significantly from state to state. In some instances, water fluoridation levels vary considerably from state to county. Families with low socioeconomic status were less likely to live in fluoridated counties (Sanders et al., 2019). There are still approximately 100 million individuals in the US who do not have access to fluoridated water (CDC, 2021d). Food Access Food selection and ingestion play a prominent role in oral health. The consumption of sweetened foods, cariogenic snacks, and sodas frequently leads to higher rates of caries in children (Chi et al., 2014). Certain foods were also significantly associated with an increased risk of developing early childhood caries in African Americans (Ghazal et al., 2015; Johansson et al., 2010). Furthermore, frequent intake of fast foods, high-fat foods, high-sugar foods, and sweetened beverages were also shown to significantly increase the odds of experiencing pain in a group of African American adolescents in rural South Carolina (Yuen et al., 2011). For some, healthy food choices are not easily accomplished. Socioeconomic status and the ability to access quality foods are significantly associated (Chi et al., 2014; Ghazal et al., 2015; Johansson et al., 2010; Yuen et al., 2011). Researchers have found strong links between food insecurity (e.g., inadequate access to quality and variety) and the ability to make desirable 13 food choices (U.S. Department of Agriculture, 2022). Parents emphasized how financial constraints negatively impacted healthy food and beverage choices, resulting in their children's unhealthy food selections (Collins et al., 2016). This did not always change due to being able to access quality food; they often reported having limited time available for healthy food preparation, which led them back to quick, easily accessible cariogenic snacks (Collins et al., 2016). Social Environment Support Systems Systems of support can be executed at the local level, the population level, or anywhere in between. In California, state legislation (AB 1433 Pupil Health: Oral Health Assessment, California Education Code Section 49452.8) requires all public school students entering kindergarten (or first grade if they never previously attended kindergarten) to receive an oral health assessment or complete a waiver based on specific criteria, as part of their kindergarten readiness activities (California Department of Education, 2021). Some of the many goals of this program were to ensure that all children are connected with dental professionals, raise the awareness of the importance of oral health, and assist with the enrollment of families into benefit programs (California Dental Association, n.d.). Another, more local attempt was an intervention to increase the utilization of dental services for African American children in a kindergarten class by providing school screenings. The authors found that neither referrals nor reminders to parents improved their use of this service, even at their child’s school (Nelson et al., 2012). However, school-based dental sealant programs were effective (US DHHS, 2000; CDC, 2021e). Dental sealant programs, where a dental professional applies a thin film (sealant) to the teeth to protect them against cavities, are 14 typically housed in communities with many vulnerable children at greater risk for developing caries. These programs were well received because they have been shown to increase the reach of dental practitioners in the community and serve as a cost-saving measure by reducing the need for costly emergency dental treatments (US DHHS, 2000; CDC, 2021e). Socioeconomic Status Parental education level is a known social determinant for children's overall health, and this extends to oral health as well. Significant associations between caregiver education and their child’s oral health were noted for a dyad of parents and kindergartners, where lower parental education was associated with increased dental caries and higher parental education was associated with increased likelihood of service utilization (Heima et al., 2015). Similar results were found for preschool children enrolled in a Florida Head Start program. Higher parental educational levels were associated with lower rates of decayed, missing, or filled teeth and served as a predictor of better oral health (Weatherwax et al., 2015). Individual Factors Health Literacy Health literacy, the capacity to obtain and understand healthcare information to make informed decisions, is positively associated with several health outcomes (DeWalt et al., 2004). Greater health literacy was associated with better patient-dentist communication, improved patterns of dental care utilization, and led to higher levels of self-reported oral health (Guo et al., 2014). In a study of pregnant women, researchers found that oral health literacy rates were significantly associated with oral health knowledge (Hom et al., 2012). Similarly, a study of caregivers found that low literacy impacted the correlation between their child’s oral health status and oral health quality of life (Divaris et al., 2012). In contrast, researchers of caregivers 15 who participated in the Special Supplemental Nutrition Program for Women, Infants and Children (WIC) in North Carolina found no significant association between dental utilization and oral health literacy (Burgette et al., 2016). African American caregivers also were more likely to obtain their oral health information from those in their community (i.e., teachers, babysitter, support group) (Inglehart et al., 2019). Parenting Styles/Traits Parenting styles and beliefs may influence the uptake of interventions. African American parents suggested that treatments that allowed for autonomy and a sense of control, by either the parent or the child, were preferred. For example, parents reported they were more comfortable with adaptations to in-home oral care practices than community water fluoridation interventions (Adams et al., 2012). Similarly, positive reinforcement and tell-show-do were among the top two behavioral management techniques for African American parents, in a list that included anesthesia, protective stabilization, and nonverbal communication, among others (Chang et al., 2018). In preschool-age children, who had not previously had an experience with the dentist, there was an association between parenting styles and anxiety, but not for children who had previously had a dental visit (Lee et al., 2018). For example, children with authoritative parents exhibited more positive behaviors (e.g., coping skills, stress tolerance) than caregivers with different parenting styles. Also, caregivers’ positive attitudes about oral health (i.e., toothbrushing, prevention, tooth decay) were significantly associated with child’s oral health behaviors (Clarke et al., 2019). Past Behaviors Many interventions that aim to improve children’s oral health target parents and caregivers because of the impact that their decisions have on a child’s behavior. Parents' health 16 knowledge and practices play a significant role in their children's behaviors. For example, caregivers who participated in preventative dental care services were more likely to bring their child to the dentist for preventive care (Ismail et al., 2011). Appearance Several interventions have attempted to increase the understanding and capacity of children to improve their oral hygiene. When considering older children (i.e., youths, teens), independence and the power and influence of societal norms are particularly important. African American adolescents (12-18 years) showed low interest in seeking oral care based on the perceived threat from oral disease but were very motivated by aesthetics (Dodd et al., 2014). Although aesthetics may seem superficial, it reflects teens’ health connection to looking good. Still, it also provides the confidence required to engage with others and participate in the community, as teens indicated their motivators for good oral hygiene, which results from their desire to avoid peer rejection, be attractive, and have confidence, among others (Calderon & Mallory, 2019). The impetus for adolescents to improve their oral health may be influenced by their desire to look and present a certain way, but it is effective in changing behavior. More than two- thirds of African American teens improved their oral care practices (e.g., frequency of tooth brushing and flossing) based on self-report, following an intervention that provided education regarding self-care, including an oral hygiene module (Baker et al., 2012). Based on the literature, it is evident that there are many domains of influence on oral health for African Americans, which contribute to overall oral health outcomes. 17 Specific Aims The oral health disparities for African American children with and without disabilities deserve a greater spotlight because of the importance of oral care to overall health, engagement, and function. Currently, no studies have examined the intersection of autism, African American culture, and oral health practices. This dissertation study addressed this gap by achieving the following set of aims: Aim 1: Identify the oral health knowledge, attitudes, and practices of African American parents/caregivers of children with and without autism. A culturally tailored questionnaire was administered to 125 Black/African American and multiracial (including Black/African American) parents and caregivers of children with autism (n=65) and without autism (n=60) aged 4 to 14 years. The survey included topics related to knowledge of oral health habits, such as common misperceptions about oral health and causes of cavity formation; attitudes associated with performing oral care routines, and impetus for obtaining oral care, including questions about the motivation for going to the dentist, keeping teeth healthy, fatalism about the eventuality of having poor oral health, and access/barriers to oral care including patient-provider relationships; oral care practices of the child and the parent; and self-report of oral health status. Aim 2: Develop a deeper understanding of the barriers that inform oral health practices of African American families with children with autism. Eleven parents/caregivers of children with autism were interviewed twice for approximately 60-90 minutes each to elicit rich descriptions of the factors that impact oral health practices and get an increased understanding of intervention desires. Through this interview, information was gathered on the following topics: (1) background (parent/caregiver, child), (2) health services (i.e., health 18 coverage, provider availability, quality of care), (3) physical environment (i.e., geography, food access) (4) biological factors (i.e., fear and anxiety, sensory sensitivities), (5) individual factors (i.e., health literacy, parenting style) and (6) social environment (social supports, stigma). Aim 3: Identify gaps in oral health care for African American children with autism and share caregivers’ proposed parental recommendations for improvements across levels of influence to enhance oral health. Caregivers provided recommendations for peers and dental professionals to address concerns they identified on multiple levels of influence (e.g., individual, interpersonal, community, societal, structural). This has been developed into an online resource (i.e., a website) for stakeholders to utilize this information more readily. 19 CHAPTER 2: Methodology Theoretical Framework Occupational Science Concepts Oral care health disparities are often discussed from the perspective of public health. While this is a valid approach to studying population-level health, some factors at the individual, familial, and community levels can sometimes be overlooked, leading to gaps in intervention. A complementary approach to the discussion of this topic would be to consider it using a perspective informed by occupational science. Occupational science is an interdisciplinary field interested in the “study of the human as an occupational being, including the need for and capacity to engage in and orchestrate daily occupations over the lifespan” (Clark et al., 1991, p. 306). Occupational scientists also are interested in the performance patterns individuals/groups use to engage in occupations, including habits and routines. Habits are described as the tendency to respond and perform repeatedly and consistently in familiar environments, while routines are defined as behaviors that are observable, regular, and repetitive (American Occupational Therapy Association [AOTA], 2014). Thus, oral care may be approached from the perspective of habits and routines. In addition, oral hygiene has long held a place in occupational therapy as an activity of daily living (ADL) (AOTA, 2014). Occupational science is uniquely positioned to address the persistent health disparities that exist in the minoritized communities (i.e., African Americans, and autistic children) by exploring the varied factors that prevent individuals and communities from fully achieving quality oral health care. Core Concept: Engagement The underlying presumption proposed by Mary Reilly during her Eleanor Slagle Lecture, “That man, through the use of his hands as they are energized by mind and will, can influence 20 the state of his own health”, encapsulates the assumption that emanated from the early founders of occupational therapy that the act of doing can lead to improved health outcomes (Reilly, 1962, p. 88). The connection between health and occupation has been traced from the Moral Treatment movement to the Arts and Crafts movement to World War I and beyond (Reed et al., 2013). Not surprisingly, this connection between occupation and health also serves as one of the fundamental pillars of occupational science. Early founders described occupational science as “the study of human as an occupational being, including the need for and capacity to engage in and orchestrate daily occupations over the lifespan” (Yerxa, 1990, p.8). In short, understanding occupation is understanding what humans need to do, want to do, or have to do, and how these activities, occupations, or beliefs matter to them and their life. For this project, I see oral care in people of African ancestry as an essential occupation that they must engage in to meet their overall health needs, and engagement in occupation as an influencer of well-being, a means of remediation, and a mediator of health, on the individual and collective level (Hocking, 2000; Whiteford & Wicks, 2000). Core Concept: Occupational Justice A little over two decades after the founding of the discipline of occupational science, a more critical approach to the concept of engagement began to emerge in the literature. Disruption of occupation was expounded upon in Whiteford’s (2003) explanation of occupational deprivation as “a state of prolonged preclusion from engagement in occupations of necessity and/or meaning” (p.222). Whiteford identified several factors (e.g., social, economic, geographic, cultural, or political), often beyond the control of the individual, that contribute to the phenomenon of deprivation (Whiteford, 2003). This speaks to the focus of context in relation to engagement in occupation. Additionally, Townsend and Wilcock (2004) introduced the 21 concept of occupational justice, which is based on the belief that “occupational participation is interdependent and contextual”, meaning that engagement depends on the interaction of several factors which influence the outcomes of others (p. 256). There was also a push to transition the focus of the impact of engagement from the individual to the collective (Dickie et al., 2006; Whiteford & Pereira, 2012; Wilcock, 2005). As previously mentioned, occupational justice is a critical approach to understanding occupation, which has developed in the discipline’s recent history. The term ‘occupational justice’, credited to Wilcock and Townsend (2000), found its way into the occupational science literature in the early 2000s (Durocher et al., 2014). Occupational justice is described as the recognition that “values attached to occupation are dependent on cultural and socio-political determinants” and that participation in occupation is “central to human existence” (Durocher et al., 2014, p. 420). Whiteford (2000) described external restrictions which keep “a person or a group of people…[from] doing what is necessary and meaningful” as occupational deprivation (p. 200). Therefore, any opposition to that is an injustice. To further elucidate the topic of occupational injustice, Durocher et al. (2014) identified several conceptualizations, including: occupational apartheid, occupational deprivation, occupational marginalization, occupational alienation and occupational imbalance. For the purposes of this project, the concept of occupational justice/injustice serves as a foundation for understanding the factors that envelop a person’s, or group’s, ability to access and participate in or engage in occupations of necessity and/or of choice, and is essential to understanding how and why oral health disparities can continue to exist in the Black/African American population. 22 Behavior Change Knowledge, attitudes, and practices have been recognized as foundational requirements from which behavior modification can occur. However, there are several perspectives regarding how behavior change occurs. Health promotion behavior changes are complex. Many influences contribute to the successful implementation of a behavior change, including individual influences, systematic, sociocultural, and familial factors. A transactional view of behavior change may elucidate why health disparities continue to serve as barriers to successfully enacting the desired behaviors. As Dickie et al. (2006) argue, “occupations which are functionally integrated with social relationships, cultural contexts and community actions… [which are] aspects of the transactional whole” are more effectively engaged in (p. 87). This transactional approach to occupation changes the perspective from the individual as the center of everything to the notion that “separate entities come together…originating from one or the other or both” (p.88). This is an essential consideration because the evidence suggests that the disparities persist because several levels of influence serve as barriers to care. Additionally, African American families are responsive to behavior change interventions that address multiple spheres of influence. Conceptual Framework Health Belief Model A health model that incorporates the major dimensions that impact well-being should include “the inner world of the individual, the material world of the physical body, social structures, and cultural belief systems and values” (Hanlon et al., 2011, p. 340). The Health Belief Model (HBM) includes several individual factors, including perceived susceptibility (likelihood of getting a disease), perceived severity (the seriousness/consequences of contracting 23 an illness), perceived benefits (positive aspects of adopting health behavior), perceived barriers (obstacles to performing a behavior), and perceived self-efficacy (confidence in the ability to perform the recommended health behavior). These beliefs are modified by demographic, structural, and psychosocial factors (Skinner et al., 2015). The overall premise of HBM is that behavior change occurs when the person believes that taking action (based on their perception of risk) will have a desirable outcome (benefit). One of the major limitations of this model is the assumption that opportunities and resources are available and accessible to those who want them. Anderson Healthcare Utilization Model The development of this framework was meant to improve access to medical care. This conceptual model is used to help understand the multiple dimensions that impede and or facilitate access to medical care, emphasizing both the contextual and the individual determinants. One of the unique components of this model is that the authors recognize that there are predisposing factors (existing conditions that predispose people to use services), enabling factors (conditions that encourage the use of services), and need (conditions attention) across both contextual and individual characteristics (Andersen & Davidson, 2007). National Institute of Minority Health and Health Disparities Research Framework The National Institute on Minority Health and Health Disparities (NIMHD) has created a research model that is meant to be used to assess multi-dimensional health determinants relevant to understanding and addressing minority health and health disparities (NIMHD, 2017). Benefits of this model include the acknowledgement that health outcomes span multiple levels of influence and numerous social determinants of health (Biological Factors, Individual Factors, Physical Environment, Social Environment, Health Services) in determining health disparities. 24 Project Conceptual Framework The conceptual framework for this project uses the HBM, Anderson Healthcare Utilization Model, and NIMHD Research Framework elements (see Figure 1). The domains of influence identified by the NIMHD were adapted to include: health services, physical environment, biological factors, individual factors, and social environment. The rationale stems from the fact that oral health disparities are not the result of a single cause; there are often several interconnected and complex reasons why they exist. Therefore, examining the identified domains of influence will provide additional insight into what contributes to individual beliefs, practices, and outcomes. When exploring why participants do or do not make behavior changes, it is essential to know what drives their personal beliefs. The adaptation of the HBM in this project accounts for the individuals’ knowledge and attitudes and how those impact the individuals’ actions, which ultimately impact their overall health practices. Changes in health behaviors can eventually lead to differences in health outcomes, a relationship identified in Andersen’s healthcare Utilization Model (Andersen & Davidson, 2007). This project’s conceptual framework also highlights the multidirectional relationship between health outcomes, health behaviors, individual knowledge/attitudes/beliefs, and domains of influence. 25 Figure 1 Conceptual Framework 26 The purpose of research in this dissertation is to identify the barriers and facilitators to oral care for African American children with and without autism spectrum disorders in support of potential solutions to decrease oral health disparities, increase health habits that impact oral care, and increase the utilization of oral health services. Methods Overview of Design The overall objective of this proposal is to determine the factors that impact oral care for African American children with and without autism through a mixed-method convergent parallel design (see Figure 2). A mixed-method approach was selected due to the heterogeneous nature of the subject group and because of the novelty of this topic. A convergent parallel mixed-method design allows for a more complete understanding of the participants’ perceptions while limiting bias and misinterpretation from the investigative team. Figure 3 overviews the basic research plan. The convergent parallel design involves concurrent phases. The quantitative data (Phase 1a) and the qualitative data (Phase 1b) are collected simultaneously. The data is then analyzed (Phase 2). This design intends to explain the quantitative results with in-depth narratives from a smaller number of participants who can help the researcher understand the ‘how and why’ of the quantitative outcomes. Following data collection of Phase 1, researchers will examine the data (for trends, themes, effect sizes, and statistical significance) (Phase 2) to understand better the barriers that contribute to the oral health disparities of Black American children. Key data will be integrated into a joint display, a tool used to identify themes of concordance and discordance (see Appendix E). In Phase 3, resources will be included in an online resource for parents and caregivers based on key findings. 27 Figure 2 Procedural Design 28 Figure 3 Sequence of Phases in the Project. Aim 1 – Methodology (Survey) Aim 1: Identify the oral health knowledge, attitudes, and practices of African American parents/caregivers of children with and without autism. A1 Participants African American parents or primary caregivers of children aged 4 to 14 years with a diagnosis of ASD (n=65) and those without ASD [(non-ASD); n=60] qualified for inclusion. Primary caregivers, such as grandparents, were included because changes to the family unit have made it very common for associated relatives to assume responsibility for the primary care of children (Anderson et al., 2022). The ages of 4 to 14 years were selected due to the periods of tooth eruption and the anticipated level of assistance required from parents/caregivers to complete in-home oral hygiene practices. Additional inclusion criteria: English speaking; self- identify as Black/African American or multiracial including Black/African American, and identify their children similarly; ASD diagnosis reported by parent and validated by T-score of 60 and above on the Social Responsiveness Scale, Second Edition (SRS-2) (Constantino & Gruber, 2012) or non-ASD status validated by a T-score of 59 or below on the SRS-2. Phase III: Recommendations Develop a matrix of potential solutions to improve oral health Phase II: Analysis Describe oral health knowledge, attitudes, and practices Identify factors contributing to oral health practices Phase I: Data Collection Survey Interviews 29 Participants were excluded if they had the following diagnoses: Down Syndrome, Cerebral Palsy, or other genetic, endocrine, or metabolic dysfunction, which might have severely impacted oral health. Only one child per family was included. A1 Procedures Participants were recruited from social media (e.g., Facebook, Instagram, Reddit), Research Match, and lists of individuals who previously enrolled in the SADE-2 study who agreed to be contacted about future research opportunities. Respondents were provided with a brief written introduction to the purpose of the study, informed that participation was voluntary and anonymous, and invited to complete the survey. Participants were provided with a link to an online survey, the Oral Health Questionnaire (OHQ), hosted on a secure web-based platform at the University of Southern California on Research Electronic Data Capture (REDCap). Respondents were offered a stipend ($15 gift card) for their time and participation. A1 Measurement Social Responsiveness Scale, Second Edition (SRS-2). Participants (parents/caregivers) were instructed to complete the Social Responsiveness Scale, Second Edition (SRS- 2)(Constantino & Gruber, 2012). The SRS-2 is a tool used to identify the presence and severity of social impairments, which are often evident within the autism spectrum. It can be completed by parents, or teachers, for individuals ranging in age from 2.5 to 18 years. Each of the 65- items are scored on a 4-point Likert scale (e.g., 1=not true, 2=sometimes true, 3=often true, 4=almost always true). The severity score is categorized into one of four classifications: severe (T-score of 76 and above), moderate (T-score of 66-75), mild (T-score of 60-65), within normal limits (generally not associated with clinically significant ASD) (T-score of 59 and below). 30 The normative sample of the SRS-2 included nearly 2000 participants, just over half (52%) being school age. The SRS-2 yielded moderate-to-high correlations with other rating scales, including the Social Communication Questionnaire (Rutter et al., 2003), the Children’s Communication Checklist (Bishop, 1998), the Social and Communication Disorders Checklist (Skuse et al., 2005), and the Childhood Autism Rating Scale (Schopler et al., 1980); as well as strong internal consistency and strong predictive validity (Bruni, 2014; Moody et al., 2017). When compared to the ‘gold standard’, Autism Diagnostic Interview-Revised (ADI-R; Rutter et al., 2003) and Autism Diagnostic Observation Schedule – Second Edition (ADOS-2; Lord et al., 2012), low to moderate correlations were found for concurrent validity; however, test authors argue that this may be due to the difference between diagnostic test administration (Bruni, 2014). Oral Health Questionnaire (OHQ). The OHQ is a survey with an approximately 20- minute completion time which was developed (in collaboration with Floríndez,L.I.) through literature reviews of oral care; interviews with minoritized and medically underserved populations; and panel review by experts in pediatric dentistry, nutrition, occupational therapy, public health, survey development (e.g., biostatistics, psychometrics), and minority health. This questionnaire also has been used to examine oral care in Latinx populations (Floríndez, Como, et al., 2021) and pilot tested with 10 African American families for clarity of wording before its use with this population. The survey consists of questions about oral health habits, perceptions about oral health, and causes of cavity formation. It also includes questions about attitudes related to performing oral care routines and the impetus for obtaining oral care, including items about the motivation for going to the dentist, keeping teeth healthy, fatalism and the eventuality of having poor oral health, and access/barriers to oral care. Finally, the survey includes questions about the in-home oral health practices of the child and parent and a self-report of overall oral care health. 31 Demographic information was also obtained. The survey includes both dichotomous and Likert- scale based questions. The knowledge scale consists of 21-questions, with ‘True-False-I don’t know’ answer responses. Scores were based on the number of correct responses, with an “I don’t know” response treated as an incorrect answer. Most questions have ‘True-False-I don’t know’ answer responses. The remaining questions in this section are multiple-choice, with only one correct response. The attitude scale consists of 38-questions and used a 7-point Likert scale, where caregivers were asked to express their level of agreement with a statement. The scores were converted to a numerical value of 1 to 7 (agree responses 5-7; disagree responses 1-4). There are 23-questions on the oral care practice scale. Items were scored with either a (0), (1), or (2) based on the question. Frequency questions (i.e., “how often do you usually brush your teeth?”) with a 0-score being given for a response of “never”, a score of (1) for a reply equivalent to “sometimes/partial”, and a 2-score for meeting or exceeding established professional recommendations. “Yes/No” questions (i.e., “does your child floss?”) also utilized a 0-2 scale with a “no” response getting a (0), “sometimes” a (1), and a “yes” a (2). The scores for each item were summed to obtain the scale score, with a higher score indicating more health facilitating behaviors. Questions were reverse-scored if they asked about negative attitudes, access beliefs, or practices. Access and demographic questions were described descriptively. A1 Analysis Survey data was used to answer the following questions: (a) Is there a significant difference between parents of children with and without ASD in oral health knowledge, attitudes, or practices; (b) Is there a significant relationship between parent/caregiver oral care knowledge 32 and their oral care practices; (c) Is there a significant relationship between parent/caregiver oral care knowledge and their child’s oral care practices; (d) Is there a significant relationship between parent/caregiver oral care knowledge and their oral care beliefs; (e) Is there a significant relationship between parent/caregiver oral care knowledge and their access to oral care services? Additional exploratory questions were also be examined (e.g., Is there a significant relationship between parent/caregiver perceived access to oral care services and their oral care practices?, Is there a significant relationship between a parents’/caregivers’ daily oral care practices and their child’s daily oral care practices?). Data from the survey was imported into a statistical analysis software package [IBM SPSS Statistics for Windows, Version 27.0] for analysis. Groups were compared and analyzed separately. Frequencies and percentages for each item, as well as for groups of related items, were calculated. Descriptive statistics for parent demographics, level of oral care knowledge, reported frequency of oral care practices, and attitudes toward oral health were computed. For descriptive purposes, means, standard deviations, frequencies, and percentages will be calculated for each survey variable and demographic variables. T-tests, chi-squares, and Fisher’s exact tests were utilized to document differences between ASD and non-ASD groups. Pearson or Spearman’s rho correlations (based on data normality) were used to assess the relationship between demographic variables, knowledge, attitudes, practices, and access to care as appropriate. A two-sided 0.05 level of significance was utilized. Moreover, test-retest reliability was evaluated to examine the psychometric properties of the oral care knowledge, attitudes, and practices survey. Twenty participants were invited to retake the survey in its entirety to verify the consistency of responses. Participants were offered an additional stipend ($10 gift card) for their time and participation. The test-retest reliability 33 coefficient for a two-week – three-week interval was determined to be very strong to moderate for knowledge (.82), attitudes (.78), and practices (.74). This analysis was undertaken to pursue the survey authors’ (Floríndez. L.I. & Como, D.H.) goal for this culturally tailored survey to be a resource for other oral health researchers. Aim 2 – Methodology (Interview) Aim 2: Develop a deeper understanding of the barriers that inform oral health practices of African American families with children with autism. A2 Participants For this phase, eleven caregivers were selected using purposive sampling based on descriptors (i.e., age, gender, socioeconomic status) to participate in interviews. Parents/Caregivers of children with autism between the ages of 4 to 14 years were invited to participate in qualitative interviews. Participants were recruited from social media (e.g., Facebook, Instagram, Reddit), Research Match, and lists of individuals who previously enrolled in the SADE-2 study who agreed to be contacted about future research opportunities. A2 Procedures A purposeful sampling strategy was utilized, and attempts were made to incorporate variation sampling to capture the heterogeneity across the population. For example, efforts were made to invite those participants with children across the age range (i.e., 4-7 years, 8-11 years, and 12-14 years), gender, and socioeconomic status, if available (based on the survey). A preliminary charting system was developed to determine which families were invited to participate, and in collaboration with committee advisors, families representing a range of experiences were invited to participate. Families who expressed interest were screened to ensure that variation remains amongst those selected to participate. 34 Originally conceived with the interviews being conducted in person, due to COVID-19, the IRB approved an updated protocol amendment for the interviews to be conducted utilizing Zoom. Two interviews per family lasting approximately 60-90 minutes each were conducted. Interviews were audio-recorded and transcribed verbatim via a professional transcription service. Ms. Como conducted all interviews. ‘Field’ notes were taken following each interview. The field notes included contextual information obtained from zoom, when possible, important observations, and subjective impressions of the process (e.g., initial ideas and thoughts). A semi-structured narrative interview guide was developed based on the information obtained from the literature review to provide depth and richness to the understanding of the factors that inform oral health practices of African American families with children diagnosed with autism. The purpose of the interview is to gather data related to particular domains, including: (1) background (parent/caregiver, child), (2) health services, (3) physical environment, (4) biological factors, (5) individual factors, and (6) social environment. While the survey and interviews were intended to be completed concurrently to ensure that the interviews yielded valuable contributions to the data sets, interviews were not commenced until at least ten surveys (ASD group) had been completed and reviewed to verify that the interview guide addressed specific areas of concern identified by participants. Interviewees were offered a stipend ($20 gift card - per interview) for their time and participation. A2 Analysis Thematic analysis utilizing a narrative approach was employed. The thematic narrative analysis focuses on identifying information that can aid in the exploration of the issue (Riessman, 2008). Data analysis was an immersive, ongoing, and iterative process (Creswell, 2014). Each transcription was read and reread to identify emergent themes and create initial 35 codes. A preliminary list of codes was inductively developed from the data. Then, two research study team members independently analyzed the data set utilizing a qualitative data analysis computer software [NVivo 12 released March 2020] for coding. The entire research team reviewed themes and codes for congruency. Discrepancies were resolved through discussion until consensus was reached. Aim 3 – Methodology (Recommendations) Aim 3: Identify gaps in oral health care for African American children with autism and share caregivers’ proposed parental recommendations for improvements across levels of influence to enhance oral health. A3 Recommendations Eleven caregivers of children with autism between the ages of 4 to 14 years old participated in two 60-90 minute interviews. During the interviews, caregivers were asked to share what they would want other parents of children with autism to know about dental care and what they would want a dentist to know about working with a child with special health care needs. The data was collated and classified into congruent categories, and then codes were inductively developed from the data. Two research study team members independently reviewed the data and codes for congruency. Gaps were primarily identified by reviewing the joint display (Appendix E) which highlighted areas of data concordance (and discordance) between the surveys and the interviews and through specific recommendations identified by the caregivers. A website will present the recommendations and supplemental resources utilizing knowledge mobilization strategies to disseminate this information to other families and dental professionals (Cooper, 2014). 36 CHAPTER 3: Oral Care Knowledge, Attitudes, and Practices of African American Caregivers of Children with and without Autism Introduction Oral health is a vital component of overall health, impacting the quality of life across multiple daily activities, from one’s ability to confidently express emotions and engage with others to the completion of fundamental oral functions, such as chewing and swallowing (Baiju et al., 2017; US Department of Health and Human Services [US DHHS], 2021). Unfortunately, oral health is one of the most common chronic unmet health needs in the United States for both children and adults (Centers for Disease Control and Prevention [CDC], 2019; Flores et al., 2016; Isong et al., 2012; Murthy, 2016; National Institute of Dental and Craniofacial Research, 2018). Children from underserved minoritized populations, such as Black/African Americans, or those with special health care needs, including children with autism spectrum disorder (ASD) (US prevalence 1 in 44 children), are at even greater risk for experiencing oral health disparities (CDC, 2021a; Fisher-Owens et al., 2013; Floríndez et al., 2019; Floríndez et al. 2021 [IJERPH paper]; Lai et al., 2012). This includes increased risk for caries (i.e., cavities or tooth decay) and oral-related chronic diseases, feeling more stigma and unequal treatment by their dental care provider, and poorer overall oral health status (Dye et al., 2010; Dye et al., 2012; Floríndez et al., 2021 [KAP paper]; Murthy, 2016). Despite significantly increased access to care and high rates of public insurance coverage among minoritized groups, Black/African American children continue to have higher rates of dental caries in their primary teeth (28%) and a significantly higher prevalence of untreated caries (nearly double) compared to Caucasian children (CDC, 2019, 2021b; Calderon et al., 2014; Dye et al., 2012). Many factors serve as barriers to oral health for Black/African American 37 children, including familial, social, and structural constructs – such as parental income and education level, race, disability status, insurance coverage, and the cost of services (Como et al., 2019; Fisher-Owens et al., 2013). It has been suggested that Black/African American parents might have limited knowledge about risk factors and that cultural beliefs, attitudes, and norms may influence oral health practices, including in-home care and maintaining regular dental visits (Dodd et al., 2014; Kelesidis, 2014). For example, oral care is affected by culture when there is a history of healthcare professional mistrust, a preference for cultural remedies, or belonging to an ethnic group with deeply held predispositions about preventive health (Gamble, 1997; Hilton et al., 2007; Tajeu et al., 2015). Similarly, children with ASD may experience barriers to oral health, including difficulty tolerating in-home and professional oral care practices, communication impairments, sensory processing differences, and uncooperative behaviors (Como et al., 2021). Additionally, some parents report that finding a dental practitioner willing and able to treat their child is difficult (Alumran et al., 2018; Stein et al., 2012). Furthermore, Black/African American children with ASD may face unique and largely unresearched oral challenges. For example, Black/African American children are more likely to be diagnosed with ASD at a later age than their peers and often do not receive services in a timely manner (Mandell et al., 2009; Shaw et al., 2021). This may delay their ability to engage in oral care preventative treatments (e.g., desensitization) or find an appropriate dental home, which may contribute to poor oral health outcomes. Understanding the oral health needs and disparities for Black/African American children with and without ASD merit further research due to the importance of oral care to overall health, engagement, and function. Therefore, this study aims to illuminate the oral health knowledge, 38 attitudes, and practices of Black/African American caregivers of children with and without ASD and identify areas where future research or intervention programs should be focused. Methods This data is a part of a larger mixed-method study designed to understand the barriers and facilitators to oral care for Black/African American children with and without autism spectrum disorders. This study was approved by the University of Southern California Institutional Review Board (HS-19-00995). Participants The total sample size of this study was 125 parents or primary caregivers (e.g., grandparents, guardians) with children aged 4 to 14 years, with ASD (n=65) or without ASD (n=65) who self-identified as Black/African American or multiracial, including Black/African American, and identified their children similarly. ASD diagnosis was based on parent/caregiver report and validated on the Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012). Those children with a T-score of 59 or below on the SRS-2 and described by their caregiver as not diagnosed with ASD were included in the non-ASD group. Those with a T-score of 60 or above who were described by their caregiver as diagnosed with ASD were included in the ASD group. Procedures Parents/caregivers were recruited via social media (e.g., Facebook, Instagram, Reddit), Research Match, and a list of previously recruited study participants who agreed to be contacted about future research opportunities. Respondents were provided with a brief written introduction to the purpose of the study, informed that participation was voluntary and anonymous, and invited to complete the survey. Participants were provided with a link to the online survey on 39 Research Electronic Data Capture (REDCap), a secure web-based platform hosted at the University of Southern California where data was stored. Parents/caregivers completed an approximately 20-minute online survey, the Oral Health Questionnaire (OHQ), which was developed with particular attention to racial-ethnic minority groups (i.e., African American and Latinx) and ASD populations. In addition, participants completed the Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012) to confirm the diagnosis of ASD. All participants were offered a $15 gift card for completing these assessments. Social Responsiveness Scale, Second Edition (SRS-2) The SRS-2 is a 65-item tool used to identify the presence and severity of social impairments, which are often evident within the Autism spectrum. The SRS-2 serves as a reliable clinical measure of ASD (Constantino & Gruber, 2012). The severity score is categorized into one of four classifications: severe (T-score of 76 and above), moderate (T-score of 66-75), mild (T-score of 60-65), within normal limits (generally not associated with clinically significant ASD; T-score of 59 and below). Oral Health Questionnaire (OHQ) The OHQ was developed based on literature reviews of oral care, interviews with minoritized and medically underserved populations, and panel reviews by experts in pediatric dentistry, nutrition, occupational therapy, public health, and survey development (e.g., biostatistics, psychometrics), and minority health. This questionnaire also has been used to examine oral care in Latinx populations (Floríndez, Como, et al., 2021). The OHQ is a 120-item survey assessing oral health knowledge (21-items), attitudes (38-items), and practices (23-items), as well as access (8-items) and demographic questions. The topics covered relate to parental oral health knowledge (i.e., causes of cavity formation), parent and child in-home oral health 40 practices (i.e., frequency and duration of toothbrushing), dental and oral health attitudes (i.e., motivation for going to the dentist, keeping teeth healthy), access to dental care/treatment (i.e., availability of dental services), and demographics about the caregiver and characteristics of the child. In addition, questions were asked about oral care education (i.e., willingness and preferred method to receive additional information about oral care). The knowledge questions consisted of ‘True-False-I don’t know’ answer responses, which were scored as correct or incorrect, with an “I don’t know” response treated as a wrong answer. Questions about attitude used a 7-point Likert scale, where caregivers were invited to express their level of agreement with a statement. The scores were converted to a numerical value of 1 to 7 (agree responses 5-7; disagree responses 1-4). The oral care practice questions asked about parent and child oral care activities. Items were scored with either a (0), (1), or (2) based on the question. Frequency questions (i.e., “how often do you usually brush your teeth?”) with a 0-score being given for a response of “never”, a score of (1) for a reply equivalent to “sometimes/partial”, and a 2-score for meeting or exceeding established professional recommendations. “Yes/No” questions (i.e., “does your child floss?”) also utilized a 0-2 scale with a “no” response getting a (0), “sometimes” a (1), and a “yes” a (2). The scores for each item were summed to obtain the section score, with a higher score indicating more health facilitating behaviors. Questions were reverse-scored if they asked about negative attitudes, access beliefs, or practices. Access to care and demographic questions were descriptive in nature. This survey is available from the authors upon request for broader use. Analysis Data from the survey was imported into a statistical analysis software package [IBM SPSS Statistics for Windows, Version 27.0] for analysis. Descriptive statistics were conducted for 41 parent demographics, level of oral care knowledge, reported frequency of oral care practices, and attitudes toward oral health. For descriptive purposes, means, standard deviations, frequencies, and percentages were calculated for each survey variable and demographic variables. T-tests, chi-squares, and Fisher’s exact tests were utilized to document differences between ASD and non-ASD groups. Pearson or Spearman’s rho correlations (based on data normality) were used to assess the relationship between demographic variables, knowledge, attitudes, practices, and access to care as appropriate. A two-sided 0.05 level of significance was utilized. Results Demographic Characteristics The demographic characteristics of the study participants are shown in Table 1. Of the 125 participants, 105 (84%) self-identified as Black/African American, and 20 (16%) self- identified as multiracial (including Black/African American). There was a significant difference in race t(123) =4.994, p=<0.001 between the ASD and non-ASD groups, with the non-ASD group having 19 (31.7%) participants identifying as multiracial compared to 10 in the ASD group (1.5%). The majority of the respondents (76%) identified themselves as mother/stepmother. Five participants (4%) identified as guardian/caregiver (i.e., guardian, grandparent) and 20% identified as father/stepfather. The mean parent/caregiver age was 37.45 years (SD=7.2), and the mean child age was 8.94 years (SD= 3). There was a significant difference in education t(123) =3.958, p=<0.001; income t(123) =2.556, p=0.012; and marital status t(123) = -5.179, p=<0.001 between the ASD and non-ASD groups, with the non-ASD group reporting more years of education completed and higher incomes, while the ASD group reported higher rates of marriage/domestic partnership (89.2% ASD; 50% non-ASD). Most parents/caregivers (80.8%) reported being currently employed, with no significant difference 42 between the ASD and non-ASD groups. The majority of the parents reported having dental insurance for themselves (83.2%) and their children (94.4%). SRS-2 The SRS-2 was administered to all caregivers. Scores of 60 participants were within normal limits, aligning with the parent’s report of no ASD diagnosis (non-ASD group). Of the 65 children in the ASD group, the majority (66%) fell into the moderate severity level (see Table 1). Scores in this range indicate deficiencies in reciprocal social behavior that may substantially interfere with everyday interactions. At the same time, mild severity is similar to the colloquially used term - “high functioning,” and the severe range indicates more profound interference (Constantino & Gruber, 2012). Oral Health Questionnaire (OHQ) Oral Health Knowledge [Knowledge] The knowledge section consisted of 21-questions. The average number of questions correctly answered for the whole sample was 14.06 (SD=4.2), with a significantly lower score for parents/caregivers of children with ASD (12.68, SD=3.6) compared to those in the non-ASD group (15.55, SD=4.4), t(123)=3.999, p<0.001). The questions that less than half of all respondents answered correctly concerned the relationship of poor oral health to other chronic conditions (i.e., stroke, lung cancer). There was a significant difference in correct responses from parents/caregivers between the two groups (ASD and non-ASD) on 10 of the 21 knowledge items. A higher percentage of parents in the non-ASD group got 8 of these ten correct. The items included topics regarding the cause and prevention of bacteria (plaque) and cavities (e.g., toothpaste with fluoride helps to prevent cavities, flossing daily helps prevent plaque from forming between teeth, plaque causes cavities) and the impact of sugary foods on oral health 43 (e.g., limiting sugary snacks helps prevent cavities, carbohydrates can break down into sugar and can harm teeth), with more caregivers of children with ASD responding incorrectly. See Table 2 for the significant differences found in the OHQ sections for families with children with and without ASD. Dental and Oral Health Attitudes [Attitudes] Overall, most respondents (79.2%) indicated that they care about oral health as much as general health. Parents/caregivers (89.6%) reported that they trust their child’s dentist and believe their child receives high-quality care from their dentist (86.4%). Those who indicated they did not trust their child’s dentist were all from the non-ASD group (10.4%). Just about half of the caregivers reported for themselves (51.2%) and their child (50.4%) that they were fearful of going to the dentist. More than half (52%) of the caregivers believe that their race/ethnicity negatively influences their child’s treatment. The majority (58.4%) reported they agree (i.e., somewhat, strongly) that they would prefer their child’s dentist to be of the same race/ethnicity, with more of the caregivers of the ASD group in agreement. Nearly all of the participants (94.4%) agreed they would be willing to take time off from work to get their child to a dental visit, although most caregivers (68.8%) also agreed that they wished their dentist had more flexibility in their appointment availability. Most of the participants (80%) reported prioritizing their child’s dental health over their own. The ASD group was asked if they believe that their child’s ASD makes oral care activities challenging to complete, and most parents/caregivers (86.2%) reported in the affirmative. Significant differences in attitudes between caregivers of children with ASD and non- ASD (see Table 3) were noted regarding their ability to prevent cavities, aid their child to have healthy teeth, the eminent loss of teeth in old age, and the importance of other health problems 44 over dental disease, with caregivers of the ASD group indicating more agreement with the statements, denoting negative attitudes about self-efficacy to prevent oral health issues. There were also significant differences between the ASD and non-ASD groups related to food choices and preparation. While most caregivers agree that cooking meals at home allows for better monitoring of their child’s sugar intake, nearly all of the caregivers of children with ASD agreed (98.5%) compared to caregivers of the non-ASD group (78.3%). Furthermore, a significant difference was noted in caregivers’ ability to get their child to eat foods that promote healthy teeth. More caregivers of children with ASD (81.5%) agreed that it was easy compared to the non-ASD group (51.7%). Most caregivers of children with ASD (93.8%) indicated that their child’s food preferences make eating non-sugary foods difficult. At the same time, the majority of the non-ASD group also agreed (55%) that there was a significant difference. Parent and Child in-home Oral Care Health Practices [Practices] Slightly more than half of the parents/caregivers reported that, on average, their child has been to the dentist once (28.8%) or twice (25.6%) in the last year, while over 40% reported that their child had not been to the dentist in the previous year. However, most caregivers (60%) said they had not had a dental cleaning in the last year; 20.8% reported one cleaning, and 17.6% reported two cleanings. Four percent of the children and 1.6% of the caregivers went to the dentist for a cleaning three times last year. In the home, just over half of the caregivers reported that their child brushes their teeth at least twice per day (59%), for at least 120 seconds (26.4%), and usually flosses (65.6%). For themselves, 62.4% of caregivers reported they brush their teeth two times per day or more, for 120 seconds or more (34.4%), and regularly floss when they brush (56.0%). 45 Significant differences between the ASD and non-ASD groups on five of the 21 items. Caregivers of the ASD group (87%) report their child usually flosses (with or without assistance), while only 41.7% of non-ASD group caregivers report their child usually flosses. This difference also extended to the caregivers, as the parents in the ASD group reported usually flossing when they brush (81.5%) compared to the non-ASD group (28.3%). Significant differences were also noted in the number of minutes spent brushing their teeth, with the non- ASD caregivers and child brushing for a longer duration than those in the ASD group (see Table 4 for values). Access to Dental Care/Treatment [Access] The majority of respondents reported that they agreed (i.e., somewhat, strongly) that they can access dental services for their child with relative ease, including finding their child a dentist (70.4%), scheduling a dental appointment (71.2%), and accessing transportation (personal or public) (91.2%). Caregivers also agreed that their child has a regular dentist (91.2%), dental care for their child is affordable (74.4%), and their child’s dentist has business hours that work with their schedule (73.6%). Significant differences were noted between the responses to the access questions in the ASD group and non-ASD groups. The caregivers in the ASD group seemingly had more perceived access. Caregivers of the ASD group more strongly agreed with statements regarding access to affordable dental care (p=<.001), getting dental insurance for their child (p=<.001), finding a dentist (p=.002), and scheduling appointments with ease (p=.003) compared to the caregivers of the non-ASD group. A significant difference also was noted in non-ASD caregivers who report they are largely unable to find a dentist who is the same race/ethnicity as them (p=<.001) compared to the ASD group. 46 Relationships Between Aspects of Oral Care Spearman’s rank correlations were computed to assess relationships between knowledge, practices, attitudes, access, and specific demographics (e.g., education, income). There was a small positive significant correlation between parent/caregiver knowledge and the family’s oral care practices, r(123)=0.211, p=0.018, and with knowledge and attitudes, r(123)=0.686, p<0.001. There was no significant relationship between caregiver knowledge and their perceived access to services. Nor was there a significant relationship found between parent/caregiver perceived access to oral care services, their oral care practices, and parent attitudes. However, a significant positive correlation was found between oral care practices and attitudes, r(123)=0.377, p=<0.001. There was also significant positive correlations for the following scales and demographics: knowledge and income, r(123)=0.215, p=0.016; knowledge and education, r(123)=0.507, p=<0.001; attitudes and education , r(123)=0.459, p=<0.001 and attitudes and income , r(123)=0.199, p=0.026. As expected, income and education were significantly related. There was a significant relationship between oral health knowledge, access, attitudes, and practices for each of the groups: (1) For the ASD group, there was a positive correlation found between attitudes and practice, r(60)=0.483, p=<0.001; knowledge and attitudes, r(60)=0.480, p<0.001; knowledge and practices, r(60)=0.308, p=0.013; and a negative correlation between attitudes and access, r(60)=-0.287, p=0.020; knowledge and access, r(60)=-0.273, p=0.028. (2) For the non-ASD group, there was a positive correlation between access and knowledge, r(55)=0.537, p=<0.00; attitudes and access, r(55)=0.650, p=<0.001; attitudes and practice, r(55)=0.373, p=0.003; and attitudes and knowledge, r(55)=0.744, p=<0.001. In summary, for both groups, as oral health attitudes increased, so too did oral health practices and knowledge. For the non-ASD group, oral health attitudes and knowledge improved 47 as perceived access to oral health services increased. Also, for the ASD group, oral care practices increased as oral health knowledge increased; conversely, when access decreased, attitudes and knowledge about oral health increased. Ongoing Needs Most of the respondents (80%) reported that they would like to increase their oral health knowledge and indicated that they would like to learn more ways to improve their child’s oral health (88%). Sixty percent of respondents reported previously trying to find information to enhance their child’s oral health; of these, the most frequent sources included health professionals (31.2%), the internet (27.2%), and friends or family (13.6%). The majority of the caregivers (68.0%) reported that they would be at least somewhat likely to participate in a free education program. The preferred method of delivery was online (64.8%), followed by a paper method (e.g., pamphlet) (30.4%), and one percent of the respondents would prefer an in-person method. At the same time, the remaining caregivers indicated “no preference”. That said, the majority of the caregivers (71.2%) indicated they would be at least somewhat likely to participate in a community oral health initiative (i.e., oral exams, dental cleanings) that occurred at their child’s school. Discussion The findings of this study highlight the relationships between knowledge, attitudes, practices, access, and various demographics that impact oral health for Black/African American families of children with and without ASD. The relationship identifies gaps, behavior patterns, and cultural beliefs which are largely unrecognized in oral health for these intersecting identities. Limited knowledge has been suggested as one possible reason for the persistence of oral health disparities in Black/African American parents/caregivers (Dodd et al., 2014). One of the 48 main areas in which oral health knowledge was limited for all caregivers was the relation of poor oral health to other chronic conditions (i.e., heart failure, stroke, diabetes, lung cancer). Targeting oral health is critical to improving the overall health of underserved populations, as poor oral health has been linked to heart disease, stroke, and diabetic complications and overwhelmingly impacts African Americans (CDC, 2017). African Americans' health is often affected by increased risk factors and higher incidence, morbidity, and mortality rates of many chronic diseases and conditions compared with White Americans (CDC, 2005; Noonan et al., 2016). African Americans had 40% higher rates for all-cause deaths in all age groups less than 65 years, for heart disease, stroke, and diabetes compared to Caucasians (Cunningham et al., 2017). The caregivers of the ASD group also showed decreased knowledge about the negative impact of sugary foods (e.g., carbohydrates, desserts) on oral health outcomes. Sweet snacks and foods like cereal, french fries, and potato chips break down to sugar in the mouth and can harm teeth, frequently leading to higher caries rates in children (Chi et al., 2014). African American children are at increased risk for developing early childhood caries based on food consumption (Ghazal et al., 2015). Caregivers in this study reported that getting their child to eat health- promoting foods was easy while also stating that their child’s food preferences make eating non- sugary foods difficult. These responses seem incongruent with one another and deserve further attention. Despite this, evidence suggests that limiting the consumption of these snacks can help prevent cavities. Therefore, it is essential that caregivers know how sugar affects teeth and can make food choices that support good oral health. African American caregivers overwhelmingly report seeking additional opportunities to obtain knowledge to improve their child’s oral health. As is evident in this study, increased dental knowledge has been shown to have a positive correlational relationship with more positive 49 oral health attitudes and practices. Thus, a tailored oral health education program that focuses on the aforementioned topics may be an opportunity to mitigate oral health disparities for African American families. One of the leading strategies for reducing oral health disparities in the United States has been to increase access to dental services through insurance and other low-cost discount plans. For instance, the funding of preventive services has increased for Medicaid coverage plans, and dental benefits must be included by any state that provides Children’s Health Insurance Program (CHIP) coverage through a Medicaid expansion program (Centers for Medicare and Medicaid, n.d.). Evidence suggests that a direct outcome of this is that access to care has significantly increased and that the rates of public insurance coverage are greatest among minorities (Flores et al., 2008). This holds true here, as the majority of parents/caregivers report having dental insurance for themselves and their child. As a result, they also say that dental care is largely affordable, likely due to higher insurance coverage rates. While accessing dental services was a largely positive experience for many caregivers, finding a dentist for those without ASD was surprisingly more challenging than for those with ASD. This is contrary to literature which indicates that parents of children with ASD report that finding a dentist for their child is difficult (Newacheck et al., 2002; Weil & Inglehart, 2012). It is possible that the respondents of this survey were mainly from urban areas where specialized services were more readily available. It is also possible that caregivers of children with ASD might have strong networks, whether collegial or professional, who utilize word of mouth referrals to find dental practitioners who are willing and able to provide services to their child. Despite indications from caregivers that dental services were accessible with high insurance coverage rates, there was still a large portion of the caregiver participants who, in the 50 previous 12-month period, had not been to the dentist or had not taken their child to the dentist. It is possible that this was a result of the sampling period, which included a time where COVID-19 pandemic precautions were being implemented across the country with a variety of restrictions. Conversely, in-home oral care practices, such as brushing and flossing, occur daily for the parent/caregiver and child in ASD and non-ASD groups. Some of the most interesting findings related to caregiver attitudes about their child’s dentist. Positive attitudes were related to better oral care practices, whether in the home or at the dental clinic. While most parents trusted their child’s dentist, those who did not were from the non-ASD group. A possible explanation may reflect the differences in how the two groups find a dentist (e.g., independent search vs. word of mouth, referrals). Another explanation may be the type of dentist from whom they are seeking services. For example, dentists who work with children with special health care needs may receive more training, resulting in a more favorable experience. It is also possible that caregivers of children with special health care needs are more familiar with the concept of medical homes and seek consistency in their health teams. Additionally, nearly half of the respondents reported that they are fearful of dentists and say the same for their child, which is significantly larger than was found in the literature, where dental anxiety is reported to be around 15% in adults and range from 5% to 20% for children (Locker et al., 1999; Seligman et al., 2017; Siegel et al., 2012). This is an essential factor to consider as caregivers are primarily responsible for introducing and implementing good oral health practices to their child and may inadvertently transfer their fear and anxiety. In addition, this may influence their general attitudes about dentists. High dental fear and anxiety rates were also found in a Latinx population (Floríndez et al., 2021). The higher rates for minoritized groups are worth exploring to determine what has led to these increased rates. 51 Caregivers indicated that patient-provider relationships might be strained as more than half stated that they felt their family's race/ethnicity negatively influences how their child is treated at the dentist. Homophily, the tendency to bond with those who are similar may be a potential facilitator for overcoming patient-provider mistrust and oral health disparities. More than half of the participants reported that they would prefer for their child’s dentist to be of the same race/ethnicity as themselves (80% ASD group; 35% non-ASD group), which may be linked to their belief that race/ethnicity negatively influences how their child is treated. However, this is not easily achieved for Black/African American patients and practitioners and may be attributed to the disproportionate growth of minoritized populations compared to dentists with minority backgrounds. According to a report produced by the American Dental Association (2020), African Americans comprise 12.4% of the population, while only 3.8% of dentists self-identified as African American. Parental education level and income is a known social determinant for children's overall health. This extends to oral health as well. Lower parent education has been associated with increased dental caries; higher parental education was associated with an increased likelihood of using dental services yearly for their child (Heima et al., 2015; Weatherwax et al., 2015). This research gives support to the impact that social determinants of health (i.e., parental education and income) have on oral health as knowledge was positively correlated with education, and attitudes were positively correlated with income and education. This is important because the ASD group had lower education and income levels and negative attitudes about self-efficacy to prevent oral health issues, contributing to persisting oral health disparities. 52 Limitations This work has many strengths, including the coverage of a broad range of health factors (i.e., knowledge, attitudes, practices, access, culture) on oral health outcomes in a minoritized population. The survey represented a critical integration of culturally-based concepts into a questionnaire. Limitations of the study include a relatively small sample size. Additionally, as we did not collect identifying information from respondents, we have no way to ensure that parents only completed the survey once. However, due diligence and a thorough review were utilized to minimize multiple responses (i.e., IP address review). Conclusion Black/African American caregivers of children with and without ASD seem to have foundational knowledge about oral health and basic practices; however, they are interested in learning more. Thus, tailored oral health education programs may be an opportunity to mitigate oral health disparities for Black/African American families. Most families expressed a preference for having the education provided online. This likely reflects the difficulty with transportation, time off work, and finding appropriate child care. Perhaps COVID-19 has made online education a more acceptable method of receiving information. Patient-provider relationships may need to be strengthened as many families indicated they experienced dental fear and that they felt their race/ethnicity impacted the way the dentist treats them. Creating culturally-tailored educational and behavioral interventions may help to improve oral health disparities for Black/African American families. It is essential to continue to explore the intersection of culture and oral health for this population. 53 Table 1 Demographics Total ASD Non-ASD N= 125 65 60 Questionnaire completed by Mother/Stepmother 95 (76%) 42 (64.6%) 53 (88.3%) Father/Stepfather 25 (20%) 22 (33.8%) 3 (5%) Guardian/Caregiver 5 (4%) 1 (1.5%) 4 (6.7%) Parent age 37.45 (7.2) 37.05 (7.0) 37.88 (7.4) Parent race/ethnicity Black 105 (84%) 64 (98.5%) 41 (68.3%) Multiracial (including Black) 20 (16%) 1 (1.5%) 19 (31.7%) Child gender Male 66 (52.8%) 33 (50.8%) 33 (55%) Female 59 (47.2%) 32 (49.2%) 27 (45%) Child age 8.94 (3.0) 9.02 (2.6) 8.87 (3.4) Child race/ethnicity Black 104 (83.2%) 63 (96.9%) 41 (68.3%) Multiracial (including Black) 21 (16.8%) 2 (3.1%) 19 (31.7%) ASD severity (SRS-2) ASD Not Present 60 (48%) - 60 (100%) Mild 3 (2.4%) 3 (5%) - Moderate 43 (34.4%) 43 (66%) - Severe 19 (15.2%) 19 (29%) - Child overall health Excellent 16 (12.8%) 3 (4.6%) 13 (21.7%) Very good 44 (35.2) 22 (33.8%) 22 (36.7%) Good 50 (40.0) 31 (47.7%) 19 (31.7%) Fair 15 (12.0) 9 (13.8%) 6 (10%) Poor 0 0 0 Parent overall health Excellent 9 (7.2%) 3 (4.6%) 6 (10%) Very good 32 (25.6) 16 (24.6%) 16 (26.7%) Good 51 (40.8) 27 (41.5%) 24 (40%) Fair 27 (21.6) 15 (23.1%) 12 (20%) Poor 6 (4.8) 4 (6.2%) 2 (3.3%) Dental insurance Parent Yes 104 (83.2%) 55 (84.6%) 49 (81.7%) 54 No 21 (16.8%) 10 (15.4%) 11 (18.3%) Child Yes 118 (94.4%) 59 (90.8%) 59 (98.3%) No 7 (5.6%) 6 (9.2%) 1 (1.7%) Siblings Yes 99 (79.2%) 54 (83.1%) 45 (75%) No 26 (20.8%) 11 (16.9%) 15 (25%) Education <High School 4 (3.2%) 0 4 (6.7%) Some HS/Completed HS 23 (18.4%) 13 (20%) 10 (16.7%) Some college/Associate’s degree 61 (48.8%) 49 (75.4%) 12 (20%) Bachelor’s degree 16 (12.8%) 1 (1.5%) 15 (25%) Graduate/Post Graduate degree 21 (16.8%) 2 (3.1%) 19 (31.7%) Marital Status Married/Domestic Partnership 88 (70.4%) 58 (89.2%) 30 (50%) Single/Divorced/Widowed 37 (29.6%) 7 (10.8%) 30 (50%) Household income <20,000 12 (9.6%) 5 (7.7%) 7 (11.7%) 20,000-34,999 11 (8.8%) 1 (1.5%) 10 (16.7%) 35,000-49,999 20 (16.0%) 7 (10.8%) 13 (21.7%) 50,000-74,999 51 (40.8%) 42 (64.6%) 9 (15.0%) 75,000-99,999 17 (13.6%) 8 (12.3%) 9 (15.0%) 100,000+ 14 (11.2%) 2 (3.1%) 12 (20%) Employment Status Employed 101 (80.8%) 51 (78.5%) 50 (83.3%) Unemployed 24 (19.2%) 14 (21.5%) 10 (16.7%) 55 Table 2 Significant Differences in Individual Items of Oral Care Knowledge of Families with Children with and without ASD Knowledge ASD n=65 (% correct) Non-ASD n=60 (% correct) p Children don't need their own toothbrush until all their teeth come in. 92.3% 80.0% .045 Using toothpaste with fluoride helps prevent cavities. 55.4% 78.3% .007 Flossing daily helps prevent bacteria (plaque) from forming between teeth. 53.8% 93.3% <.001 Cavities are caused by bacteria (plaque) that forms on teeth. 58.5% 88.3% <.001 Limiting sugary snacks (desserts, chocolate, candies) helps prevent dental cavities. 40.0% 93.3% <.001 Drinking fruit juice is better than eating candy for your teeth. 72.3% 53.3% .028 Foods containing carbohydrates (like bread tortillas, pizza crust, cereal, fries, potato chips) break down into sugar in the mouth and can harm teeth. 38.5% 75.0% <.001 Dental problems are related to heart failure. 27.7% 73.3% <.001 Dental problems are related to stroke. 18.5% 38.3% .013 Dental problems are related to diabetic complications. 24.6% 58.3% <.001 56 Table 3 Significant Differences in Individual Items of Oral Care Attitudes of Families with Children with and without ASD Attitudes ASD n=65 % agree Non-ASD n=60 % agree P 1 I trust my child's dentist. 100% 78.3% <.001 My family cares about oral health as much as general health. 90.8% 66.7% .002 Meals I cook at home allow me to better monitor my child's sugar intake than meals at restaurants. 98.5% 78.3% <.001 Getting my child to eat foods (carrots, leafy greens, etc.) that are good for promoting healthy teeth is easy. 81.5% 51.7% <.001 My child's food preferences make eating non- sugary foods difficult. 93.8% 55% <.001 I prefer that my child’s dentist be the same race/ethnicity as me. 80% 35% <.001 I think my family's race/ethnicity negatively influences how my child is treated at the dentist. 73.8% 28.3% <.001 There is nothing I can do to prevent cavities in my child. 76.9% 10% <.001 There is not much I can do to help my child have healthy teeth. 66.2% 8.3% <.001 Dental disease is less important than other health problems. 75.4% 30% <.001 It is natural for people to lose their teeth in old age. 84.6% 56.7% <.001 I prioritize my child’s dental health over my own dental health. 90.8% 68.3% .003 I am fearful of going to the dentist. 61.5% 40% .020 1 Fisher’s Exact Test 57 Table 4 Significant Differences in Individual Items of Oral Care Practices of Families with Children with and without ASD Practices ASD n=65 * Non-ASD n=60 * p *see measure in parenthesis next to each question I reward my child with candy, soda, chocolate, ice cream or other sugary treats. *(Yes) 15.4% 38.3% .004 How many minutes does your child spend brushing his/her teeth? *(Average seconds [secs]) <30 secs 60-90 secs <.001 On average, how many minutes do you spend brushing your teeth? *(Average seconds [secs]) 60-90 secs ≥120 secs .002 Does your child floss (with or without assistance/prompts)? *(Yes) 87% 41.7% <.001 Do you floss when you brush your teeth? *(Yes) 81.5% 28.3% <.001 58 CHAPTER 4: Oral Health Barriers for African American Caregivers of Children with Autism Introduction Health Equity is described as the fair opportunity to achieve and attain the highest level of health potential and not be disadvantaged because of social position or unjust systemic distribution (American Public Health Association, 2018; Brennan Ramirez et al., 2008; CDC, 2018; Institute for Healthcare Improvement, 2018). These inequities can lead to increased risks for the type, duration, severity, and impact of disease and disability. While acknowledging these disparities has led to increased attention and focus, health inequities persist, especially in populations that are medically underserved, minoritized or have barriers to accessing quality care. Disparities are not the result of a single cause; instead, there are often several complex, dynamic, and intersectional reasons why they exist. One of the most common unmet health needs for children in the United States, with several areas of documented disparity, is oral health (Murthy, 2016; CDC, 2018; NIH, 2021). The most persistent oral health disparities impact racial and ethnic minorities, as African Americans/Blacks, Hispanics/Latinos, and American Indians/Native Alaskans have the worst overall oral health outcomes, even after controlling for socioeconomic status (CDC, 2018; Manski & Brown, 2008). As poor oral health has been linked to heart disease, stroke, and diabetic complications, and overwhelmingly impacts African Americans (CDC, 2019), targeting oral health is therefore critical to improving the overall health of these populations. The health of African Americans is affected by increased risk factors and higher incidence, morbidity, and mortality rates of many chronic diseases and conditions when compared with Caucasians (Curtin, 2019; Noonan et al., 2016). Several structural, sociocultural, 59 and familial factors have been identified as impacting the ability of African Americans to utilize oral care services (Como et al., 2019). Oral health practices (i.e., in-home care, preventative dental visits) for African American parents may be influenced by limited knowledge about risk factors, cultural beliefs, and norms via preferences for cultural remedies, biases about preventative health, or mistrust of health care professionals (Dodd et al., 2014; Floríndez et al., 2019; Hilton et al., 2007; Kelesidis, 2014; Tajeu et al., 2015). Another vulnerable population for health inequity are individuals with special health care needs (Bishop-Fitzpatrick & Kind, 2017; Smith et al., 2020). For example, children with autism spectrum disorder (ASD; autism) are at greater risk of experiencing oral health disparities than the general population (Fisher-Owens et al., 2013; Koritsas & Iacono, 2011). This elevated risk may result from difficulties in implementing oral care practices due to impairments in communication, sensory processing sensitivities, uncooperative behaviors, restrictive eating habits, and dental fear and anxiety. For example, only half of the children with autism brush their teeth twice daily as recommended, and up to 70% of parents of children with autism report that toothbrushing, even once a day, is difficult (Marshall et al., 2010; Charles, 2010; Stein et al., 2012). This challenge may be exacerbated by the sensory demands of the activity (i.e., the taste and texture of toothpaste or the tactile sensation of the toothbrush bristles) (Stein et al., 2012; Floríndez et al., 2022). In addition, parents/caregivers of children with autism report limited access to dental practitioners who are both willing and trained to treat their child (Newacheck et al., 2002; Weil & Inglehart, 2012). African American children with autism may face unique and largely unresearched oral challenges. Intersectional identities can lead to a myriad of privileges and disadvantages. Unfortunately, there is not always an equal distribution of advantages, and sometimes the 60 outcome can result from additive disparity. For example, African American children are often diagnosed with autism at a later age than their peers and, as a result, often do not receive services in a timely manner (Mandell et al., 2009). This may delay their ability to engage in preventative treatments (e.g., desensitization), exacerbating the factors contributing to African American children's poor oral health. A number of qualitative studies have explored oral health for children with autism, with caregivers sharing that sensory sensitivity, autism awareness of dental professionals, and parent- provider partnerships, among others, are barriers to good oral health (Duker et al., 2017; Floríndez et al., 2019; Lee & Chang et al., 2021; Lewis et al., 2015; Parry et al., 2021). For example, in a study with male youth with autism, parents described how they felt that it was difficult to find a dentist (Duker et al., 2017). Similarly, a group of parents with primary and secondary age children also shared how difficult oral care practices can be and how parents should be consulted as experts on their children (Parry et al., 2021). However, limited research exists regarding oral care for African American children with autism, despite the persistence of oral health disparities for both groups. Therefore, the aim of this paper is to describe barriers to oral care as depicted by African American parents of children with autism to explore further how and why oral health disparities persist in this population. Methods The data reported are part of a larger mixed-method study designed to understand the factors that contribute to the persistence of oral health disparities for African American families. This study was approved by the University of Southern California Institutional Review Board (HS-19-00995). 61 Participants Participants included eleven caregivers of children with autism, ages 4 to 14 years, who identified as Black/African American. As seen in Table 1, all interviewees were mothers, with one father also participating. The majority of children represented were boys, consistent with ASD prevalence. Participants were distributed across the age range of 4 to 14 years and from different regions of the United States. The majority of the parents completed at least some college, while income varied widely across participating families. Approximately half the children were reported by their parents to have mild to moderate ASD severity and the other half severe. Procedures This study is part of a larger study with 125 African American participants who completed an online survey about oral care knowledge, attitudes, and behaviors, eleven caregivers of children with autism between the ages of 4 to 14 years who identified as Black/African American participated in two qualitative interviews to describe their oral care experiences further. Survey participants who indicated that they were willing to be contacted regarding participation in the qualitative interview component were contacted. A purposeful sampling strategy was utilized to select the participants and attempts to capture the heterogeneity across the population were considered. For example, efforts were made to recruit participants with children across the age range (i.e., 4-7 years, 8-11 years, and 12-14 years), gender, and socioeconomic status (see Table 1). Parents who expressed interest were screened to ensure that variation remained amongst those selected to participate. Originally conceived with the interviews being conducted in person, due to COVID-19, an updated protocol amendment was 62 approved by the IRB for the interviews to be conducted utilizing Zoom, which has been found to be an effective method (Archibald et al., 2019). After completing an informed consent process, caregivers were interviewed twice for approximately 60-90 minutes each. All interviews were conducted by a doctoral student who is African-American and Latina and trained in qualitative research and interview techniques. Interviews were audio-recorded via Zoom and transcribed verbatim by a professional transcription service. A doctoral student and a qualitative methodology expert developed a semi- structured narrative interview guide based on the information obtained from a literature review to provide depth and richness to the understanding of the factors that inform oral health practices of African American families with children with autism. Through this interview, we gathered information related to the following topics: (1) background (parent/caregiver, child), (2) health services (i.e., health coverage, provider availability, quality of care), (3) physical environment (i.e., geography, food access) (4) biological factors (i.e., fear and anxiety, sensory sensitivities), (5) individual factors (i.e., health literacy, parenting style) and (6) social environment (i.e., social supports, stigma). We also collected basic demographic information from all participants. Data Analysis Thematic analysis utilizing a narrative approach was employed. The thematic narrative analysis focuses on identifying information that can aid in the exploration of the issue (Riessman, 2008). Data analysis was an immersive, ongoing, and iterative process (Creswell, 2014). Each transcription was read and reread to identify emergent themes and create initial codes. A preliminary list of codes was inductively developed from the data. Then, two research study team members independently analyzed the data set utilizing a qualitative data analysis 63 computer software (NVivo 12) for coding. The entire research team reviewed themes and codes for congruency. Discrepancies were resolved through discussion until consensus was reached. Results Three themes emerged from the data concerning the barriers that affect oral health experiences of African American families with children with autism: (a) difficulty in maintaining good oral health practices, (b) challenges with access to care and resources, and (c) poor patient-provider relationships. Difficulty of Maintaining Good Oral Health Practices Parents described factors, such as their own experiences, the sensory needs of their child with autism, and getting their child to brush their teeth regularly as reasons why it was challenging to maintain good oral health for their child. In addition to wanting to ensure that their child does not experience pain or have cavities, a participant described how having a child with autism amplified her awareness of needing to take different actions for her child. The parent said: I guess it's because I don't want them to end up like me. Like be so young with cavities and missing teeth. And I know my momma didn't take us [to the dentist] a lot. So, I want to take them a lot, especially my son, because he don’t talk. And if he was to have a cavity, I mean if he was to be in pain from a cavity, I wouldn’t know because he doesn’t talk. He’ll just cry. This parent situated her own experiences of having suboptimal dental care and reduced access to care as a child as directly related to the actions she takes with her child regarding keeping up with his dental care needs. However, she also relays the difficulty of getting care for her son with autism, as his limited communication abilities impede knowing when he is in pain. 64 Other parents supported this sentiment and acknowledged that it would be challenging to know what might be affecting their child with autism without regular dental visits, as their child’s nonverbal communication may not be adequate for pointing the caregiver to an area of concern or pain. In addition to communication, parents also described how sensory sensitivities impacted oral health practices both in the home and in the dental clinic. One caregiver shared that utilizing an electric toothbrush was challenging for their child due to their sensory needs, “Maybe it's too much - the sound, the vibration. Keeping the toothpaste on the brush, and it's splattering on different parts of his mouth, I think probably might not be fun for him”. Despite this recommendation from the dental professional to use an electric toothbrush instead of a manual toothbrush to aid in-home oral care practices, the sensory stimuli increased substantially, leading to decreased attempts at toothbrushing. The sensory demands of a dental clinic visit also can result in challenging behaviors and lead to barriers for the child, caregiver, and practitioner. One parent described the sensitivities their child experiences in the dental clinic, stating: In the beginning, I think, when it comes to the vacuum suction, she doesn't like that. So, the dentist lowers it [the suction power]. But if it's just a loud sound, like the drilling, she doesn't like it. When she was getting her cavities filled, I think the drilling kind of caused an issue for her, or the noise. And she started to get upset, had a tantrum, started getting aggressive. She started kicking. Her father and my dad actually went to help. The caregiver went on to describe how the behaviors demonstrated by their child in the clinic led to subsequent treatments requiring general anesthesia for completion, which caused the caregiver to be a little apprehensive about seeking care. Another parent shared how their child’s behaviors 65 in the clinic as a result of their sensory sensitivities led to a traumatic experience, causing them to refrain from further treatment for several years. They wanted to strap her in, which I didn't want them to do. I don't know. I think I wrapped the blanket around her once, and then when I left the room, they tried to strap her in. It just as so traumatic. It's like imagine being strapped in and it's already sensory overload and whatnot…So, maybe we didn't go for three or four years. Whether the child’s sensory needs result in difficulty brushing teeth or tolerating a dental treatment in a clinic, it is a significant obstacle to consider. Additionally, many parents shared that getting their child with autism to incorporate the recommended oral care practices into their daily routines usually required additional teaching and assistance. One parent explained their child’s oral care practices this way: What I try to do, because he tries to be independent, is I let him brush his teeth first. But then when I look at his teeth, and I don't like how he brushes them, I'm kinda OCD, I'll grab a toothbrush and start doing it over…Then he gets mad and bites down on the toothbrush, and it's kind of like I'm battling back and forth with it. It is hard sometimes…But I try to brush his teeth every day. Another participant described her children’s oral care practices and how the siblings support each other this way: Basically…when he sees [his siblings] in [the bathroom], he'll come in, and they'll sing, ‘Teeth, teeth, you have to brush your teeth.’ And then he’ll say, ‘No, no, no. I don't want to brush my teeth’. Then they'll say, ‘Please. Please. Brushing is good for you’. And he’ll say, ‘Yeah, yeah, yeah. I like that. Woo’. Then he'll let them brush them. But if I say it, he's like, ‘No’. 66 Another participant described the challenge with her son, “I try to get my autistic son to brush at least twice a day, but it's a struggle. You've got to hold him down and put him - lock him under your legs just to brush his teeth in the morning”. Another parent shared, When you have a child on the spectrum, it's overwhelming… I would say depending where you kid is on the spectrum, and how much support you need to give that kid, it may affect what things you have to do for your kid. Like for me, I'm not making any excuses, but my kid needs everything. He needs help in everything that he does. He's learning. He has challenges every day as far as skills. Other caregivers used the help of professionals to address behaviors or sensory needs of their child that made oral care activities difficult. The following participant spoke about how the occupational therapist [OT] adapted their session to include oral practices into the treatment plan when the parent was having trouble getting their child with autism to use the toothbrush, saying: …she [the OT] would cut his session down and work ten minutes of teaching him how to brush his teeth. That did help because it was like once he seen that she stepped in to help, then it made it a little bit easier for us to get his teeth brushed because she would keep a toothbrush specifically for my son. Right before his session was over, they would go across the hall, and she would take him in the back and show him how to brush his teeth. It kind of made the situation a little bit better. Another caregiver described how their behavioral therapists helped them to develop an in home oral care routine. So, obviously, initially it was like teaching him how to brush his teeth. So, home-based behavioral therapy helped with that. They helped with all that, and the flossing. And then 67 we also use a fluoride rinse. So, he does that in the morning when he wakes up, and then he does that at night. He flosses usually once a day. He probably should do more than that. But, yeah, I think the dentist wanted him to do more than that. Challenges with Access to Care and Resources The access to resources and supports theme illustrates how the social and structural environment, such as lack of finances, health care access, or resources, may serve as a barrier to oral health. One parent described the stress she feels when contemplating going to the dentist because of the potentially high cost of the treatment: I don't want to go. I need to go. That's honest. And I will go, but I don't want to go. I don't want to sit there and it's like, ‘Okay. Are you going to have to pull teeth?’ Just issues that I have. It's like, ‘Okay. Well, you're going to give me this laundry list of things or things that I can't afford.’… So, you know, that's just stressful for me, to deal with the reality of the expense - along with, ‘How do we get this done?’ This is not the only caregiver to voice concerns about the cost of dental services. It is not just the high cost of the services but the emotional stress they feel about the uncertainty of those costs and how they will afford them. Another parent equated the pressure she feels going to the dentist with the same feeling she experiences taking their car to the mechanic, saying: I'm always a little skeptical when we go to the dentist. What are they going to find? It's kind of like when you bring your car in to get a checkup. Okay, they're going to find a $1,200 issue, or a $300 issue? You know what I'm saying? Financial stresses, health care access, and the ability to obtain health-focused services, are major concerns for many communities. Several of the participants described another aspect of access related to the dental insurance status of the families and how that translated to 68 inequitable treatment. Most participants expressed some level of discontent with their dental insurance. One parent described the impact of having insurance on accessing services: Insurance definitely plays a role. Because when you don't have insurance, it's kind of like, I got to have money in order to go, or you just bear it until maybe you can't. And then do you just opt to have your tooth taken out? So, having insurance now, it plays a big role. As mentioned, dental insurance allows families to seek out oral care services and the option to be selective about treatment choices. However, these choices are not infinite, as one parent shared. Even with insurance, it can be challenging to find a dentist in their local community, “…it’s hard finding someone who accepts our insurance that's within a reasonable distance from our house”. Unfortunately, not all insurance is created equal, at least for the several parents who explained feelings of disparity in the quality of treatment they received based on the type of their insurance (e.g., public, private). As this participant describes, it is not only the lack of options but also the feeling that the quality is just passable when insurance coverage is state-sponsored: I truly believe that it depends on your medical insurance coverage. That definitely affects how you're treated as far as medical or health…But when they find out, for me and my family, we've had [state sponsored insurance] for a while. And you know, [state sponsored insurance] doesn't cover a lot of things. And it definitely makes a difference as far as what type of service you get… If you have like [state sponsored insurance], which is the standard or the government insurance, everything has so many limitations on what, you get the bare minimum, you know. Another participant echoed a similar experience of blatant unjust treatment, being segregated to different waiting rooms based on the type of insurance they possessed. They said: 69 They treat you differently based on whether you can pay or what your insurance is. Yes, you're treated differently. At this one dentist office, I forgot, that we went to when my kids were younger, they actually had a - he had us enter separately. And I don't know whether it was considered a bias, per se. But he had his office divided…the people that had [state sponsored insurance] went to this particular section, and then the ones that had the other insurance went to the other section. Participants also disclosed their perception of limited or lacking community resources. Several parents described their physical environment as under-resourced. One participant shared how finding resources in the community can be complex, often requiring a great deal of effort and research. When asked about community resources, they said: There's not enough of anything. You really have to dig for stuff and find your own resources. If there is a community event or something for kids, you really don't even know about it because there's really no advertising. I'm like hours on the internet always searching for things and sometimes you find one thing, you find something else, but definitely not in the community. There's definitely not enough information. You could have a great program up the corner and not know about it because it's not – it's word of mouth or not advertised right or whatnot Noted in this example is the acknowledgement that a program could be occurring in the neighborhood, but community members may never know about it because advertising is often relegated to word of mouth. Another parent shared a similar response, highlighting their disappointment with the advertising of programs intended for members of the community, which often go unutilized due to lack of awareness, stating: 70 My friend, who lives a block from me, didn't even know [a specific program] existed, so that's the kind of thing. It was our place right down the block from me and she didn't know it existed and it's like, ‘We pass these things all the time’, and if you're not aware – if they're not trying to get things out in the community – there's a program in the corner and I'm not even sure what they do, but I know that I see kids in there all the time. I'll see kids of other races and it's just like, ‘How do you even know about this? I'm the one who lives in the neighborhood’. I'm just like…nobody who lives around here knows about it, so there's definitely a lack of promotion of resources within the community. The following participant expressed her dissatisfaction with the lack of resources available to the community at large, and how that has negatively impacted her child’s progress, saying: I think the biggest thing for African Americans in the autism community is to find more resources to connect them with services for their kids rather than us having to look so hard to find them on our own. That's been our biggest experience and why I kind of get frustrated by the fact that I don't think he is as far along as he could have been only because we never got the right connections to people or the right resources to get it done. Even when good programs endure, knowledge of their existence does not always disperse in a way that would impact the entire community; as a result, those in need may not benefit. Poor Patient-Provider Relationships The patient-provider relationship is a crucial aspect of all health care encounters. In this theme, participants described negative experiences with health care professionals (i.e., dental practitioners, clinic staff) that contributed to the strain of their patient-provider relationships. First, caregivers expressed the desire for respectful exchanges with health professionals. As one parent stated, “…I think no matter what your income level is. No matter what your skin color is, 71 you still should be treated with the same level of respect that everyone else is”. Unfortunately, participants described several unsatisfactory interactions with dental practitioners and dental clinic staff, which left an indelible mark impacting future experiences, regardless of the provider’s intention. For example, the following participant shared how a dentist rebuffed her parental expertise when she attempted to share information about her child, stating: That dentist, he – even though I gave him the information [child’s autism diagnosis], he wasn’t quite receptive to it. He kind of like ignored it, and I kind of ended the session before he even went into her mouth… I guess it was more like the attitude towards it. It was more like, ‘I’ve been doing this for quite a while’. He kind of [gave] that impression like all kids were the same. And I’m like, ‘Yeah. This isn’t going to work out at all. Just because you have that mindset, this isn’t going to work for me. But you know what? Thank you’. The dentist’s cavalier response resulted in the parent ending the session before treatment could begin, and the family never returned to that clinic. Another participant detailed an experience where the dentist made assumptions about the parent’s knowledge of their child: Like I remember going to [an appointment] and I was telling the doctor this happened and that happened… And [the practitioner] is like, ‘Oh, you know all that?’ and I'm thinking to myself, why wouldn't I?... I was there every day. So, you know what I mean? [Practitioners] think, oh, [parents] don't know much. And then when I start advocating effectively, not yelling and screaming, but understanding what our rights are, because I have educated myself on that and taken advanced level advocacy training, I know how to advocate for my kid. 72 Sadly, this sentiment that some health care professionals can exhibit bias in their patient-provider interactions is not uncommon among other participants. For example, in the following description, a caregiver shared how she felt that health professionals had very low expectations of parents who identify as people of color regarding their level of involvement in their child’s health pursuits, she stated: I think sometimes when people of color go to dentists’ offices, or even doctors' offices, there is this certain very low expectation in terms of what - you know, maybe the quality of health care [from the health care provider], or the [expected] level of engagement that the parent has with the child. Provider mistrust is prevalent among many groups, including African Americans, and remains a significant barrier [Kennedy, Mathis, & Woods, 2007]. Several parents expressed understanding that working with their child with autism may present a unique set of experiences in the dental clinic, requiring flexibility and patience, which was not always provided by dental practitioners or their staff. One parent articulated how health professionals should treat children with autism, saying: Just have patience. Autism is a spectrum, which means every child has a different level of tolerance, level of ability. I think they just have to take their time. Then, explain everything. I think, for those [children with ASD] who are not as [verbal], I think a lot is shown in body language and facial expression. I think just embodying – treat them the way you want them to treat your child. Just have patience and explain everything. I think that's pretty much it. Another caregiver expressed their frustration that providers are not treating their child in the manner described above, succinctly stating, “I'm running out of patience with them if they're 73 running out of patience with [my child]”. As one parent explained, the rigid response from the dental team to the suggestion that the child continue to wear their headphones throughout the dental visit to minimize the sensory input, caused the parent to terminate their relationship: It was actually like the attitude of him and just the staff…she walked in with her headphones because she does like what she's comfortable with. And I explained that to him and the staff, and they were just like, ‘Okay, well, when the cleaning starts, she's going to have to take that off’. I'm like, ‘No. She's not taking it off. It's not near her mouth. So, I'm not understanding why she has to take it off’. It was just like they had their own way of doing things. It's like they had a routine, and they didn't want to defer from that. So, I'm like, Yeah. This isn't going to work out at all. Sometimes the patient – provider relationship can be impacted by something as simple as the lack of eye contact during a visit or a less than desirable encounter with the front office staff. A parent detailed an experience with a new practitioner this way, “…it just seemed like when they were looking at his chart on the computer…and it just wasn't as professional or as friendly as I think it should be”. Another caregiver shared how the entire team influences the overall patient – provider relationship, while describing a visit at a dental clinic where the dentist was both indifferent to the parent’s concerns and impatient with the child and the front office staff was unfriendly, she said: Because if you're like that [indifferent and impatient] or your receptionist is like that [unfriendly], then I'm going to not want to come, or I'm feeling like, ‘Well, how are you going to treat my kid’? I'm just not going to like it. You're providing a service, and I'm just not comfortable. 74 Discussion In this study, African American parents identified barriers to the oral health of their children with autism that include difficulty maintaining good health practices, lack of access to resources or financial burdens associated with the cost of care, and negative clinic experiences with health care professionals. The first finding of this study highlighted that most parents actively sought positive health behaviors through the implementation of in-home oral health practices (i.e., brushing, flossing), despite the challenges they may have presented. A common sentiment explicitly expressed by the parents was that they wanted better oral health experiences for their child. They were dedicated to complying with recommendations from their health care providers for best practices, despite the inconsistent oral care childhood experiences the parents described for themselves. Caregivers also shared some of the challenges and strategies they encountered trying to implement good oral care practices with their child with autism. As one parent shared, having a child with autism often means that mundane tasks are not always routine, and they can require significant support. Therefore, creating effective routines may require additional tools and resources, such as modeling or seeking professional assistance. For example, utilizing siblings as models of desired behavior was one of the strategies identified to make brushing and flossing easier. This parallels what other researchers found regarding parents’ attempts to facilitate toothbrushing through modeling or familial assistance (Teste et al., 2021; Lee & Chang, 2021). Similarly, occupational therapists were identified as professionals who have been helpful in training and implementing daily oral care practices. These are valuable considerations that may improve the ease with which these tasks can be accomplished. 75 The second finding of this study pertains to the lack of community resources, reduced health care access, and the financial burden associated with obtaining quality oral care as a barrier to oral health, aligning with the current research (Duker et al., 2017; Floríndez et al., 2019; Lee & Chang, 2021). Several participants shared that their communities were under- resourced and that even when programs existed, they remained unaware of them. There was a sense of disappointment that so much of the awareness of these programs resulted from word of mouth; they felt that better advertising strategies would make finding resources easier and more targeted to those in need. Some parents felt as though they were in their own pursuit of resources for their child and spent hours on the internet – researching. This is not consistent with literature that suggests that African American parents may have limited knowledge about risk factors or lower levels of health literacy – the capacity to obtain and understand health care information (Dodd et al., 2014; Hom et al., 2012). One of the major barriers to health care utilization is access to insurance. Caregivers also described the stress and fearfulness they felt because of the anticipation of the financial burden the cost of oral care may present. Furthermore, there was a general mistrust and belief that the services recommended to them by dental practitioners were not required but instead were an attempt to upsell (e.g., convince them to pay for services they do not need or pay for a more expensive service despite cheaper options) them. Dental insurance affords families the opportunity to seek out and be selective about oral care treatments and services. Consequently, a leading strategy for reducing oral health disparities has been to increase access to insurance and discount dental plans. As such, most parents had some form of dental insurance for their child, regardless of their own insurance coverage status, which is similar to previous research that states access to public health insurance has increased significantly, specifically for ethnic 76 minorities (Flores et al., 2008, Isong et al., 2012). Conversely, previous research indicated that this did not necessarily translate to increased dental service utilization for African Americans, but that did not hold true for this population (Guarnizo-Herreño & Wehby, 2012; Robison et al., 2020). A possible explanation in this study for finding high rates of insurance and high rates of dental services utilization in families of children with ASD is that parents of children with ASD may have more familiarity accessing health services and or advocating for their child. This, along with the parents’ desire to have better oral care experiences for their child, which was similar to the sentiment Latino caregivers expressed about prioritizing their child’s oral health, may be an important facilitating factor that could be expanded upon to reduce oral health disparities (Floríndez et al., 2019). The third finding spotlighted the significant impact patient-provider relationships have on oral health experiences. It is well-documented that African Americans have a tenuous history with the medical community and display evidence of mistrust for medical professionals (Como et al., 2019; Gamble, 1997; Tajeu et al., 2015). This mistrust can lead to an avoidance of services and the perception of a lower quality of care, ultimately leading to increased oral health needs (Fisher-Owens et al., 2013). African American caregivers report that they are frequently dissatisfied with their children's oral care and are more likely to say that their health practitioners do not spend enough time treating their child. This dissatisfaction may prevent them from seeking services (Flores & Lin, 2013). Several participants expressed how interactions with oral health professionals left a lasting negative impression. While none of the caregivers explicitly stated that they felt as though they were being discriminated against based on race or their child’s diagnosis of ASD, caregivers detailed encounters with dental health professionals where they felt disrespected, 77 confronted by implicit bias, and met with rigid treatment plans. This handling, regardless of intention, serves as a barrier to care. Although some caregivers reported they felt race concordance (i.e., patient and provider sharing the same race) might help with the ease of the patient-provider relationship, the prevailing thought was that the race of the oral health professionals did not matter as long as they provided competent care (Cuevas et al., 2016; Shen et al., 2018). Strengthening these relationships is crucial to reducing oral health disparities. Many approaches could be explored, including improving levels of professionalism displayed by all staff in dental clinics, increasing understanding of implicit and explicit bias, cultivating a communication style that is more widely received, acknowledging and embracing parental expertise, and promoting a more inclusive environment for children with ASD. Limitations This was a qualitative study with a small sample size. Attempts were made to capture the heterogeneity of the population by including participants who had different income levels and whose children were of different ages; this impacted the number of individuals representing each segment of the autism population and further limited the ability to generalize the findings. However, this does not take away from the rich descriptions provided by the participants, which are best for understanding the factors and contexts of this understudied group. Therefore, future studies could examine the oral care experiences by including more participants to compare the child’s age, ASD severity, parent income or education, and other characteristics that may influence care. Lastly, incorporating other methods for evaluating oral care experiences and prolonged engagement with participants, through a longitudinal design, could be helpful to see how these processes unfold over time. 78 Conclusion Due to the limited research that examines the intersection of ASD, African American culture, and oral health practices, this study provides a rich picture of the barriers African American families with children with autism face when obtaining oral care. Many of the families raised issues that other parents of children with autism also identified. African American caregivers have demonstrated that despite their own negative dental experiences, they understand the value of good oral care practices and are willing to pursue care for their child. They need their practitioners to demonstrate professionalism, patience, and flexibility, and to have resources to aid them to navigate the puzzles of obtaining insurance and financing health care. The ability of African American caregivers of children with autism to be resilient in the face of the many obstacles they encounter is a strength that should be supported and could contribute to the reduction of oral health disparities. The findings of this study can be used to inform the development of interventions and policies to improve oral health equity - the opportunity to attain the highest level of care notwithstanding social position. 79 Table 1 Interview Participant Characteristics Descriptive Characteristics N=11 interviewees (10 children) Interviewees Mother 10 (91%) Father 1 (9%) Child gender Female 2 (20%) Male 8 (80%) Child age range (years) 4.0-7.11 3 (30%) 8.0-11.11 3 (30%) 12.0-14.11 4 (40%) US Region West 2 (20%) Midwest 1 (10%) South 3 (30%) Northeast 4 (40%) SRS Severity Mild 3 (30%) Moderate 2 (20%) Severe 5 (50%) Education <High School Some HS/Completed HS 2 (20%) Some college/Associate’s degree 5 (50%) Bachelor’s degree 2 (20%) Graduate/Post Graduate degree 1 (10%) Family Income Less than $20,000 3 (30%) $20,000-34,999 1 (10%) $35,000-49,999 3 (30%) $50,000-74,999 1 (10%) $75,000-99,999 1 (10%) Over $100,000 1 (10%) 80 CHAPTER 5: Improving Oral Care for Children with Autism: Recommendations from African American Parents to Other Parents and Dental Professionals Introduction Oral health is a vital component of overall health and remains a priority focus area for Healthy People 2030 to improve oral health by increasing access to dental care services, specifically preventative services (US Department of Health and Human Services [US DHHS], 2021). Oral health is one of the most common unmet health needs for Black American children and those with special needs such as autism spectrum disorder (ASD; autism) (Baiju et al., 2017; Centers for Disease Control and Prevention [CDC], 2019, 2021a; Fisher-Owens et al., 2013; Flores et al., 2016; Floríndez et al., 2019; Floríndez et al. 2021; Isong et al., 2012; Lai et al., 2012; Murthy, 2016; National Institute of Dental and Craniofacial Research, 2018; US DHHS, 2021). Factors that impact oral health for African American children include familial, social, and structural constructs (Como et al., 2019). Children with autism also encounter numerous barriers to oral health, from the sensory demands of oral care (i.e., taste and texture of toothpaste or the tactile sensation of the toothbrush bristles) to the purported limited access to dental practitioners who are willing and able to treat them (Alumran et al., 2018; Como et al., 2021; Floríndez et al., 2022; Newacheck et al., 2002; Stein et al., 2012; Weil & Inglehart, 2012). Despite several exemplar public health strategies (i.e., community water fluoridation, dental sealants, and insurance), disparities for these groups persist. The purpose of this paper is to examine the intersection of oral health, autism, and African American culture to highlight key issues identified by African American parents and to share their proposed recommendations to other parents and dental health professionals to improve oral health for children. 81 Methods The recommendations identified in this paper are part of a larger mixed-method study designed to understand the factors that contribute to the persistence of oral health disparities for African American families. This study was approved by the University of Southern California Institutional Review Board (HS-19-00995). Eleven caregivers of children with autism between the ages of 4 to 14 years old participated in two 60-90 minute interviews. During the interviews, caregivers were asked to share what they would want other parents to know about dental care and what they would like a dentist to know about working with a child with special health care needs. The data was collated and classified into similar categories, and then codes were inductively developed from the data. Two research study team members independently reviewed the data and codes for agreement. Enhancing Oral Care: Recommendations from African American Caregivers Recommendations for Other Caregivers Caregivers of children with autism shared their recommendations for other parents, and these suggestions yielded three proposals: (1) Actively Pursue Care, (2) Partner with Dental Practitioners and the Team, and (3) Offer Grace. Actively Pursue Care Caregivers recommend that other parents appreciate how important oral health is to their child’s general well-being by finding a dentist that will serve their needs, and accessing community resources such as obtaining public or private dental coverage. Many families recognize that oral health is essential to overall health; even if they are not always able to articulate why, they still care about it as much as general health, “Dental health is very important. No matter how much you think not brushing won't harm, it definitely does. That one 82 day you miss does have an impact”. Several caregivers also prioritize their child’s oral health over their own and want to ensure that their child’s experience is different (better) than their own. However, in-home oral care practices and preventative dental services usage rates do not always reflect this attitude for many reasons. For example, some caregivers are not enforcing daily toothbrushing or taking their child to the dentist as frequently as recommended. Therefore, caregivers suggest that other parents actively pursue oral care for their child. While many families can easily find a dentist, some families have a more challenging time finding a dentist who meets their needs to ensure that dental care is being addressed by a professional, as recommended. As such, caregivers suggest finding a dentist that can adapt to the child. As this parent stated: …it's one of the most important things that they can give their child - good dental hygiene. And they need to find a dentist - if the parent had a child with special needs, or not, they need to find a dentist that is welcoming to that child, and understands some aspects of working with children with special needs. Furthermore, they encourage other caregivers to be diligent when seeking care for their autistic child, despite the challenges they may face because oral care is essential, saying: …autism is such a huge spectrum. And some kids may be pretty much fine with their teeth being brushed or no sensory issues. But I had a [challenging] experience…So, the only advice that I probably would give them is just make sure they get it done or figure out a way to get it done, you know, because to each his own. But, basically, I'm just telling them they should stay on top of it and try to get their kid regularly checked, their teeth checked, their hygiene is important. 83 In addition to finding a dentist, caregivers also acknowledge that an important component of pursuing care is being able to access the community resources that facilitate the care. Whether that be scheduling an appointment during hours that work for the parent, accessing transportation, or being able to fund the services rendered. Parents recommend getting dental coverage through whatever options are available, stating, Do it no matter what. If you have insurance, great. If your child is a child with special needs and they are a Regional Center client, you get Medi-Cal. You get the waiver. Whatever you need to do to get them in. I would highly recommend it. Many families understand that oral health is important and recognize that additional resources exist (i.e., reduced cost clinics, discount payment plans, public insurance), however, the ability to access all of the available resources remains a challenge for many. Partner with Dental Practitioners and the Team Most caregivers trust their child’s dentist and believe they generally provide high-quality care. However, care can still be improved for those who encounter challenges when seeking dental treatment. For example, many parents of children with autism feel like the symptomology associated with the diagnosis makes oral care activities challenging to complete. A significant number of caregivers report that they and their child experience dental fear and anxiety. Therefore, parents encourage other caregivers to partner with their child’s dental practitioners to improve their care. This may include disclosing their child’s diagnosis and advocating for their needs, sharing what has previously been successful with the dentist, such as dimming the lights or showing the tools to the child. Partnering with dental practitioners can make dental visits easier. For some families sharing the child’s diagnosis with the dental team can allow for conversations about what the 84 child might need, whether that be an altered environment or a modified treatment plan. These discussions also help set treatment expectations for all of the parties involved, the parent-child- practitioner. One caregiver described their recommendation this way: I would definitely insist on them going to a pediatric dentist. I don't know why people don't do that, but I would – my God. I think it would depend on the child and the level of functioning, also. I would just say, make sure you let them know – each staff member you encounter – make sure to let them know your child's on the spectrum and have them explain everything that they're doing to your child, whether or not your child understands it. Every single thing that they're doing. Ask them to have patience. Don't be afraid to advocate for your child. This is one-way families felt dental visits might be improved. Another way would be to use the child’s care team. For example, many families described how their child’s behavioral and occupational therapists served as a resource in implementing in-home oral care routines; they might also be a resource for preparing the child for a dental visit or even attending a dental visit with the child. In addition to advocating for their child’s needs at the dental clinic, partnering with practitioners can also include aiding in the preparation of a visit by speaking positively about the dentist in the child’s presence. Unfortunately, in many households, the dentist is feared by both the parents and the child. As such, it is crucial to purposefully combat the dental fear and anxiety that may be demonstrated through verbal and nonverbal communication due to an impending visit. Caregivers spotlighted how important it was to “…talk positive to their kids about the dentist visits before [they occur]”. They also urged parents to be mindful of their expressions stating, “Try to be strong. Work on your facial expressions because your kids will feed off of 85 that. And I would say that, overall, always just give your child reassurance that everything is okay”. Offer Grace The final recommendation for other caregivers was one that parents seemed hesitant to share but was expressed by several parents. Caregivers encourage their peers to offer grace (i.e., kindness, compassion, patience) to both themselves and their child. They note that being a parent is a challenging role which can be even more demanding with a child with special needs. Oral care activities, especially toothbrushing, are habitual occupations often perceived as mundane. However, for some children, performing routine dental activities can be challenging, leading to increased stress levels for the family as they try to accomplish tasks they know are crucial to health and well-being. For other parents, the lack of access to the needed resources presents barriers to wellness that can increase anxiety and be overwhelming. Caregivers felt that other parents needed to offer themselves grace because sometimes life is hard. I would just tell them you've got to take it day-by-day. You've got to find peace - you've just got to take it day-by-day and have faith. I've had my trying days, but I always keep my head up, and I keep going. If you don't have faith, you don't' have nothing. Caregivers also suggest that parents remember that dental visits can place many demands on the child sensorially, behaviorally, and physically. They encourage parents to respond with sensitivity and patience when a visit may not be going as desired, “Be patient…And when they [the child] get scared, not to be mad, just hold their hands. I mean we're all human”. Furthermore, they also remind caregivers that breaking routine can lead to increased stress for some children with autism and describe how they might address such an issue. They recommend their peers do the following: 86 Just breathe because it's going to be something new to them. No matter if you took them before, it's always going to be new because it's not something they do every day, and autistic kids always have schedules and have to do literally the same thing every day is what I've noticed…You just have to relax. This is something new to them. No matter if they go every six months or once a year, it's going to always be new to them if it's not in their daily routine. Just take a breath and breathe…, and if need be, just let the people know that he's autistic, and you're going to have to work a little harder with him so they won't be getting frustrated in the long run, and they can actually know how to go about dealing with the child. Recommendations for Dental Professionals Caregivers of children with autism also offered recommendations for dental professionals (e.g., dental practitioners, dental clinic staff), covering three topics: (1) Increase Awareness and Training, (2) Be Patient and Adaptable, and (3) Utilize Media to Facilitate Oral Health Education. Increase Awareness and Training As the prevalence rates of autism in the United States continue to increase (now 1 in 44 individuals; CDC, 2021b), it is more and more likely that dentists will encounter a patient with autism in their practice, so it is important that dental professionals are prepared. Most parents were unaware of the type of training dentists receive to work with children with special needs. However, they believe education and awareness are fundamental aspects of providing quality care. Caregivers recommend that dental professionals be knowledgeable about autism and how it may present in a dental clinic. 87 Parents wanted dental professionals to know that autism is indeed a spectrum, and they should be prepared to adapt. Every person is not the same. Every person is not going to react the same, be the same, be dealt with same. I really think that they should have a course for dealing with special needs people in general with any industry - dentist, school, all that. Everyone should be trained in it. Additionally, caregivers suggest dentists receive further education on the specifics of autism behavior to more appropriately interact with their child, from initial approach to reactions towards challenging behaviors; specifically recognizing that undesired behaviors are not always the result of poor conduct or negligent parenting, sharing: And I would say that [dentists] need to be a little educated as far as how to approach a special needs kid or a kid with autism. …a lot of people don't know, or some of them don't have or, I think, didn't have experience with autistic kids. You know, you've got to know how to approach them, and don't take it personally, whatever they do. If they kick, I'm sorry. You know, it kind of goes with the territory. When you go in their mouth, they may kick you. You know, they don't mean to but you've got to just know that it's not personal and it's not that kid that's doing that. They're doing that because their behavior is based on something else or their condition. So, I would just say you need to be educated a little bit more if you're going to treat autistic kids. …they may not react the same way. So, you cannot approach them the same way as you approach a kid that is not autistic. In addition to increasing awareness and education, some caregivers would like to see the development of a certification program that could be used to designate clinicians who have had additional training to work with those who have autism. As one caregiver stated, “I would love a 88 certification that says they've done some training to work with young children with autism. I think that might be enough for me”. Be Patient and Adaptable A key component of every health care interaction is the patient-provider relationship. Unfortunately, this relationship is strained for many African American families, including those with autism. For some families, this may result from the parents’ dental fear and anxiety, the feeling that race/ethnicity negatively influences how they are treated, or even the impression that treating their child with special needs is a burden. In this recommendation, caregivers encourage practitioners to demonstrate patience and adaptability when serving children with autism as one way of improving the patient-provider relationship. As a caregiver succinctly pointed out, there is a feeling that many dentists do not take the time needed to work with their child, and parents “ just want [dentists] to be patient, try to figure out…be patient but also know how to adapt to a situation”. Parents want dental practitioners to remember that working with a child with autism is not always the same as working with a child without autism. They may serve children with varying degrees of sensory sensitivities, cognitive ability, or focus and attention. As such, they encourage them to adapt to the needs of the child by getting on their level and approaching the situation with patience, stating: Kids with special needs, it's like if they do something, you just can't lash out at them because they may not understand what you're saying and what are the consequences because, within a split second, their mind is on something else. It's like when you do things, you have to do it at another level…Instead of them trying to get to our level to understand, we have to get down to their level to understand them to understand the situation to fix it. You just can't go rearing your head about the situation. You have to be 89 a little bit more understanding of how you approach the situation and go about the situation versus if he was not autistic. In addition, caregivers recognize that each interaction with a dental practitioner has the potential to have a lasting impact (i.e., positive or negative) on future encounters and suggest this as another reason why dental professionals need to be patient. First of all, they need to be patient. They need to be patient. They must love working with children. And they must be a people person or a kid person, you know? All those things are important for the kid's experience because they're going to make or break that experience. That's what I want them to know. Okay. If that is that child's first experience, you can make it or break it. You can make it where that kid would never ever wants to go back to the dentist. Or perhaps you could make it a wonderful experience where they'll be like, ‘Oh, I think I want to go back. Okay. It's not so bad’. You know, I was afraid because looking at the dental instruments, even for me now, like, okay. You're looking at those things. They look weird or they look odd. They look scary. And there's somebody poking at you with those instruments, going into your mouth. It's a whole other issue. Utilize Media to Facilitate Oral Health Education Caregivers were eager to learn more about oral health and how to improve their child’s health. They suggest that oral health education and promotion initiatives be enhanced. Some parents felt that the messaging about oral health was not as abundant as other health campaigns, and while this recommendation may extend beyond the scope of most individual dentists, it was identified by parents as a way they could be better served. Some caregivers shared concerns about advertisements that only seem to be focused on the smile, not on the actual health of the mouth, sharing: 90 [They need] more commercials. These advertisements telling you to get braces and telling you to do other stuff, but it's just like, okay, fix the foundation of the problem…They have so many ads telling you to fix your teeth, your smile, but they're not telling you how to take care of your [teeth]…But you've got to Google which toothpaste is the best. You don't see many toothpaste commercials anymore. Everything went downhill. In addition to expanding the scope of oral care information that is shared, some parents also expressed a desire for their child to be exposed to oral health education via media sources that they are already familiar with, saying: Now [dental care] is more available…They should probably put more cartoon-like material. Because my daughter, she likes Doc McStuffins [Disney]. So I think they should gear more cartoon-like dental campaigning to the kids, because they like cartoons and they watch it the most. Or maybe YouTube, because that's like the go-to for kids and stuff like that. And make it kid-friendly. Similarly, caregivers suggest creatively utilizing media, including all its entry points, to expand reach and impact, stating: Most of the people watch TV all day, on tablets all day, on TikTok all day, Snapchat, Facebook, all these ads. I feel like they should reach the public the way the public - what the public does all day which is people mostly on their laptops [doing work] or on phones, watching TV, with all this online school going on they can reach somebody. Just adding one or two advertisements, more money towards advertising commercials and things like that. 91 Some caregivers expressed that they already access general health and autism-specific information through social media networks and that being able to do that for oral health would be a welcomed approach, for example: Let me tell you…you could go and basically, find any type of Facebook group that you want. You've just got to go look for it. I would love if my dentists were on there, as well, because…you can go and look at what they're posting, and it helps. Supplemental Resources There are several supplemental resources that already exist that may also improve dental experiences (see Appendix F for examples). The American Academy of Pediatric Dentistry website offers a variety of information that caregivers may find helpful. For example, there is a parental education and resources section that has frequently asked questions, general information about oral health, and tips on improving oral health (American Academy of Pediatric Dentistry, n.d.). The National Maternal and Child Oral Health Resource Center also provide resources to caregivers, and others, to promote oral health, including resource guides, brochures in multiple languages, and manuals addressing topics such as dental sealants, healthy habits, and oral health during pregnancy (National Maternal and Child Oral Health Resource Center, n.d.). A dentist can provide families with these links and descriptions of information. In addition to the aforementioned resources, there are also tools available for families with children with autism. For example, Autism Speaks partnered with Colgate and Phillips- Sonicare to create dental tool kits for both caregivers and dental professionals with the goal of preparing for a dental visit (Autism Speaks, n.d.). In preparation for visits, occupational therapists or behavioral therapists may also support efforts by integrating the everyday dental 92 activities into treatment plans or preparing social stories/narratives and visual schedules for the families prior to the dental visit (Como et al., 2021). Creating a welcoming environment where the entire clinic staff demonstrates culturally responsive care or cultural humility (an approach to patient-provider relationships that attempts to redress power differences and commit to self-reflection) can also be vital to fostering positive dental experiences (Hammel, 2013). For example, utilizing strategies in the waiting room, such as creating a sensory environment that might reduce anxiety, limiting wait times, and using inclusive media (i.e., books, posters, stickers), can improve the comfort of families throughout the process. There are several resources aimed at strengthening cultural humility, including the Think Cultural Health initiative, created by the US DHHS, Office of Minority Health, which targets oral health professionals and provides them with the skills and knowledge necessary to develop culturally and linguistically appropriate care (US DHHS, “Think Cultural Health”, n.d.). In addition, caregivers recommended that dental professionals receive more training, therapists and parents could be integrated into these awareness programs, whether through formal or informal education methods, which may increase the oral health care professional’s capacity to demonstrate cultural humility. Conclusion Oral health is a critical component of our overall health, however, for African American children with autism, its pursuit remains challenging. There are several factors that impact oral health. Some of the critical issues identified include: gaps in knowledge about oral health (e.g., chronic conditions linked to poor oral care, fluoride, the impact of sugary foods and juices); the persistence of dental fear for parent and child; the strained patient-provider relationship; and the challenges families with children with autism experience when implementing oral care practices. 93 Caregivers offered recommendations to other parents and dental professionals to improve oral health, beginning with shining a spotlight on how significant good oral health is to well- being and how important it is to do everything possible to maintain good oral health practices. That said, caregivers also encouraged other parents to be patient with themselves and their child, acknowledging that it is not always easy for those with autism to complete mundane tasks. Beyond that, caregivers also suggested that parents recognize how their own dental fears may impact their child and encourage them to be a mindful example before visits. In addition, caregivers encouraged their peers to partner with the providers to improve their child’s oral health. This was coupled with the recommendation that dental professionals demonstrate patience to improve their ability to complete a treatment plan and strengthen the patient-provider relationship. Caregivers believed that a patient, well-informed dentist would be able to treat their child successfully, therefore, they recommended that dentists increase their awareness of autism and obtain as much education as possible. To improve their gaps in knowledge, caregivers suggested that oral health education and promotion programming be improved by seeking out people where they are (i.e., social media – Facebook, TikTok, YouTube). Creating tailored interventions for families of children with autism and dental professionals can help facilitate the recommendations suggested by these caregivers to improve oral health for Black American families. 94 CHAPTER 6: Conclusion Key Findings from Chapter 3 Caregivers in this dissertation demonstrated some basic knowledge of oral health, and they were able to answer approximately two-thirds of the knowledge questions correctly. Caregivers of children with autism responded significantly less correctly than those in the non- ASD group. Most of the respondents reported that they would like to increase their oral health knowledge and indicated that they would like to learn about more ways to improve their child’s oral health. More than half of the caregivers reported previously trying to find information to improve their child’s oral health from health professionals, the internet, and friends or family. The majority of the caregivers reported that they would be at least somewhat likely to participate in a free education program, with an online option being the preferred method of delivery. However, the majority of the caregivers indicated they would be somewhat likely to participate in a community oral health initiative (i.e., oral exams, dental cleanings) that occurred at their child’s school. Considering attitudes about oral health, most caregivers care about oral health as much as general health, trust their child’s current dentist, and believe they receive high-quality care. Half of the caregivers reported that they and their child were fearful of going to the dentist. Unfortunately, more than half of the caregivers believe that their race/ethnicity negatively influences how their child is treated. Nearly all of the participants agreed they would be willing to take time off from work to get their child to a dental visit, although, the majority of caregivers also agreed that they wished that their dentist had more flexibility in their appointment availability. The majority of the caregivers of children with autism report that their child’s diagnosis makes oral care activities difficult to complete and share more negative attitudes about 95 self-efficacy to prevent oral health issues. Despite this, caregivers of children with ASD agreed more strongly than the non-ASD group that access (e.g., finding a dentist, scheduling an appointment, accessing transportation) to dental services for their child was easier. In summary, for both groups, as oral health attitudes increased so too did oral health practices and knowledge. For the non-ASD group, as perceived access to oral health services increased, oral health attitudes and knowledge improved. For the ASD group, as oral health knowledge increased, oral care practices also increased; conversely, when access decreased, attitudes and knowledge about oral health increased. Key Findings from Chapter 4 Maintaining good oral health practices, access to care and resources, and poor patient- provider relationships were identified as barriers that affect the oral health experiences of Black American caregivers of children with autism. Parents described factors, such as their own experiences, the sensory needs of their child with autism, and getting their child to brush their teeth regularly as reasons why it was difficult to maintain good oral health. Additionally, caregivers shared how the behaviors demonstrated by their child in the clinic led to subsequent treatments requiring general anesthesia for completion, which caused them to be a little apprehensive about seeking care. Other parents shared how their child’s behaviors in the clinic as a result of their sensory sensitivities led to traumatic experiences, causing them to refrain from further treatment for several years. Many parents shared that getting their child with autism to incorporate the recommended oral care practices into their daily routines usually required additional teaching and assistance, often from siblings, occupational therapists, and behavioral therapist. 96 Social and structural environments, such as lack of finances, health care access, or resources may serve as a barrier to oral health. For example, families described the stress they felt due to the potentially high cost of the treatment and the emotional stress they felt about the uncertainty of those costs. Several of the participants described another aspect of access related to the dental insurance status of the families and how that translated to inequitable treatment. Most participants expressed some level of discontent with their dental insurance. Unfortunately, not all insurance was created equal, and several parents explained feelings of disparity in the quality of treatment they received, based on the type of their insurance (e.g., public, private). Caregivers also expressed their dissatisfaction with the lack of resources available to the community at large, and how that has negatively impacted their child’s progress. A key aspect of all health care encounters is the patient-provider relationship. Caregivers described several unsatisfactory interactions with dental practitioners and dental clinic staff (e.g., rebuffing parental expertise, failure to display eye contact), which left an indelible mark impacting future experiences, regardless of the provider’s intention. Several parents expressed understanding that working with their child with autism may present a unique set of experiences in the dental clinic, requiring flexibility and patience, which was not always provided by dental practitioners or their staff. Key Findings from Chapter 5 Caregivers of children with autism shared their recommendations for other parents (Actively Pursue Care, Partner with Dental Practitioners and the Team, Offer Grace) and for dental professionals (Increase Awareness and Training, Be Patient and Adaptable, Utilize Media to Facilitate Oral Health Education). Caregivers recommend that other parents appreciate how crucial oral health is to their child’s general well-being by finding a dentist that will serve their 97 needs, pursue oral care, and obtain public all resources available. While many families can easily find a dentist, some families have a more challenging time, but caregivers suggest finding a dentist that can adapt to the child. Most caregivers trust their child’s dentist and believe they generally provide high-quality care. However, parents encourage other caregivers to partner with their child’s dental practitioners by disclosing their child’s diagnosis, sharing what has previously been successful, and advocating for their child’s needs. Caregivers encourage their peers to offer grace (i.e., kindness, compassion, patience). They note that being a parent of a child with special needs may be challenging and even more so if there is a lack of access to needed resources. Caregivers also suggest that parents remember that dental visits can place many demands on the child, and they encourage parents to respond with sensitivity and patience. Recommendations for dental professionals from caregivers includes being knowledgeable about autism and how it may present in a dental clinic. Additionally, caregivers suggest oral health professionals receive further education on the specifics of autism behavior to more appropriately interact with their child, from their initial approach to their reactions towards challenging behaviors; specifically recognizing that undesired behaviors are not always the result of poor conduct or negligent parenting, One way to improve the patient-provider relationship, is for practitioners to demonstrate patience and adaptability. Parents want dental practitioners to remember that working with a child with autism is not always going to be the same as working with a child without autism; they may serve children with varying degrees of sensory sensitivities, cognitive ability, or focus and attention. 98 Caregivers also suggest that oral health education and promotion initiatives be improved. While this recommendation may extend beyond the scope of most individual dentists, it was identified by parents as a way they could be better served. Some caregivers shared concerns about advertisements that only seem to focus on the aesthetics of the mouth and not the actual health. Caregivers also expressed a desire for their child to be exposed to oral health education via media sources that they are already familiar with and creatively utilize media, including all its entry points, to expand reach and impact. In Summary The were some areas of concordance and discordance between the survey data and the interview data. Key areas of concordance were found surrounding the topics of oral health knowledge, the caregivers understanding that oral health is important, and the recognition that autism may make oral care more challenging; while areas of discordance between the data were primarily related to attitudes about dentists and the ability to access resources. Here are some the integrated key findings: (a) caregivers demonstrated some basic knowledge of oral health, yet they want to learn more to improve their knowledge and help their child; (b) most caregivers value oral health as much as general health yet many of them are still trying to overcome previous traumatic encounters and the dental fear and anxiety they and their child experience; (c) oral health practices are not easy implemented for some families with children with autism and the consequences of having a child that needs more help and then not receiving it –can lead to additional anxiety; (d) many families shared that they would like to work as a team to help their child incorporate the recommended oral care practices into their daily routines; (e) caregivers expressed their dissatisfaction with the lack of resources available to the community at large, and want more equity in the distribution of resources; and (f) several caregivers described 99 unsatisfactory interactions (e.g., rebuffing parental expertise) with dental practitioners and dental clinic staff, which can leave an indelible mark, impacting future experiences, regardless of the provider’s intentions – therefore they want to see improvements to this critical relationship. Limitations Limitations of the study include a relatively small sample size, limiting generalizability of the findings. However, this does not take away from the rich descriptions provided by the participants or the coverage of a broad range of health factors, the critical integration of culturally-based concepts into a questionnaire, and the attempts to capture the heterogeneity of the population. Survey data was not collected with identifying information from respondents, so there is no way to ensure that parents only completed one. However, thorough due diligence and detailed review were utilized to minimize multiple responses (i.e., IP address review). Future studies could incorporate other methods of evaluating oral care experiences, including prolonged engagement with participants through a longitudinal design, and examine the oral care experiences by including more participants to be able to compare characteristics that may influence care. Final Thoughts The interest of occupational scientists in the performance patterns individuals and groups use to engage in occupations, including habits and routines, uniquely positions us to redress the persistent health disparities that exist in minoritized communities by effectively exploring the varying levels of influence that keep individuals and groups from fully achieving quality oral health care. The core concepts of engagement in occupation (i.e., an influencer of well-being, as a means of remediation, as a mediator of health) and occupational justice (e.g., the ability to access and participate in occupations of necessity or choice) are strong underpinnings to 100 understand why health disparities should be eliminated—the ability to fully engage in occupations, whether fantastical or mundane, influence health and well-being. Black American families with children with and without autism face a number of barriers to oral health, which makes engagement in dental routines and habits challenging. This highlights a significant injustice. While some of these injustices occur at the societal level or above, some barriers are present at the individual, familial, and community levels. Through a transactional view of behavior change (i.e., occupations are integrated with relationships, contexts, and actions) and the data in this dissertation, it is evident that several levels of influence serve as barriers to care. Multiple domains of influence (i.e., health services, physical environment, biological factors, individual factors, and social environments) affect African American families' oral health knowledge, attitudes, and practices, impacting health behaviors and service utilization, ultimately determining outcomes. 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Social Work in Public Health, 26(7), 695-707. https://doi.org/10.1080/19371918.2010.5251 125 Appendix A: USC IRB Approval Letter Proposal #HS-19-00995 University of Southern California Institutional Review Board 1640 Marengo Street, Suite 700 Los Angeles, California 90033-9269 Telephone: (323) 442-0114 Fax: (323) 224-8389 Email: irb@usc.edu Date: Feb 10, 2020, 10:34am To: Dominique Como Research Assistant OCCUPATIONAL SCIENCE AND OCCUPATIONAL THERAPY (DIVISION 7) Hui Hong Project Specialist OCCUPATIONAL SCIENCE AND OCCUPATIONAL THERAPY (DIVISION 7) From: University of Southern California Institutional Review Board 1640 Marengo Street, Suite 700 Los Angeles, California 90033-9269 (323) 442-0114 TITLE OF PROPOSAL: A mixed methods study of the intersection of oral health, culture, and autism in African American families ( Intersection of oral health, culture, and autism in African American families) Action Date: 2/10/2020 Action Taken: Approve Committee: Institutional Review Board Chairman Note: The University of Southern California Institutional Review Board (IRB) designee reviewed your iStar application and attachments on 02/10/2020 Based on the information submitted for review, this study is determined to be exempt from 45 CFR 46 according to §46.104(d) as category (2). As research which is considered exempt according to §46.104(d), this project is not subject to requirements for continuing review. You are authorized to conduct this research as approved. If there are significant changes that increase the risk to subjects or if the funding has changed, you must submit an amendment to the IRB for review and approval. For other revisions to the application, use the “Send Message to IRB” link. The materials submitted and considered for review of this project included: 1. iStar application dated 01/23/2020 2. Semi-Structured Interview Guide, undated (uploaded 12/17/2019) 3. Oral Care KAP, dated 01/23/2020 4. Social Responsiveness Scale – 2, undated (uploaded 12/17/2019) INFORMATION SHEET AND RECRUITMENT: It is the responsibility of the principal investigator to follow the principles of the Belmont Report, which requires all potential participants to be informed of the research study, their rights as a participant, confidentiality of their data, etc. per USC IRB policy. Please utilize the Information Sheet For Exempt Research and Guidance for Recruitment materials available on the IRB website. The documents should include information specific to your study. These documents will not be reviewed by the IRB; however, it is the responsibility of the researcher to make sure the documents are consistent with the study procedures listed in the IRB application. NOTE: In the event that this study is audited by the IRB, you are required to provide the Information Sheet and recruitment documents used for this study. Attachments: Approved Documents: view Important The principal investigator for this study is responsible for obtaining all necessary approvals before commencing research. Please be sure that you have satisfied applicable requirements, for example conflicts of interest, bio safety, radiation safety, biorepositories, credentialing, data security, sponsor approval, clinicaltrials.gov or school approval. IRB approval does not convey approval to commence research in the event that other requirements have not been satisfied. This is an auto-generated email. Please do not respond directly to this message using the "reply" address. A response sent in this manner cannot be answered. If you have further questions, please contact your IRB Administrator or IRB/CCI office. The contents of this email are confidential and intended for the specified recipients only. If you have received this email in error, please notify istar@usc.edu and delete this message. 126 Appendix B: Social Responsiveness Scale, 2 nd Edition (Sample) [For Research Use Only: Material for the SRS-2, copyright 2012 by Western Psychological Services. Format adapted by D. Como of the University of Southern California, for specific, limited research use under license of the publisher, WPS, (rights@wpspublish.com). No additional reproduction, in whole or in part, by any medium or for any purpose, may be made without the prior written authorization of WPS. All Rights Reserved.] 127 Appendix C: Oral Health Questionnaire (Sample) 128 129 130 Appendix D: Semi Structured Interview Guide (This is not exhaustive of all questions that may be asked during the interviews.) Domains A. Background (parent/caregiver) a. Please tell me about yourself b. Where did you grow up? c. Who was integral to your development growing up? d. What was your experience with dental care growing up? Who was part of it? who taught you? e. Who makes up your family unit now? Who is part of your support system? f. What are some of your daily routines? What does a typical day look like for you? g. Which box do you usually check when answering questions about your ethnic identity? What about your child? h. Do you have a dentist for you/your family/your child? B. Background (child) a. Please tell me about (child’s name) b. How old is he/she? c. How old is/are his/her sibling(s)? (if applicable) d. Please tell me when and how (child’s name) came to be diagnosed with Autism? e. What services or interventions were recommended? What did you think of the services? f. Can you tell me about the first time you began brushing (child’s name) teeth? g. Please tell me about the first time (child’s name) went to the dentist? The last time (child’s name) went to the dentist? C. Health Services – (this domain is intended to draw out information from participants that address health services topics, such as Health Coverage, Provider Availability, Quality of Care, Culturally Responsive Care, etc.) a. Can you think of a time when you went to the dentist (for you/your family/your child) and the visit stood out in your mind for some reason? Please tell me about it. b. Tell me about your experience with attempting to find a dentist for (child’s name). D. Physical Environment – (this domain is will include interview questions that will cover topics such as Water Fluoridation, Geography (Rural/urban), Food Access, etc.) a. Tell me about your community. How would you describe the community in which you live? Do you feel like you could access the services that you need? b. What do you think of community water fluoridation? c. Tell me about mealtime? What type of foods do you eat? Where do you get your food? E. Biological Factors – (this domain is intended to draw out information from participants that address biological factors, such as Fear and Anxiety, ASD diagnosis, etc.) 131 a. Do you/your family/ child have any fear or anxiety about going to the dentist? If so, can you tell me more about it? b. Can you tell me about (child’s name) Autism related symptoms? (sensory sensitives, bruxism, sleeping, medications, food selectivity, communication, etc.). c. Can you tell me about (child’s name) experiences with dental practitioners? d. (If multiple children) What changes to your daily oral care routines have you made for your child with Autism? Have you started any new activities/routines? e. (If multiple children) Do you think (child’s name) has learned from siblings about routines? If so, can you tell me about that? F. Individual Factors – (this domain is intended to draw out information from participants that address topics such as Health Literacy, Culture, Parenting Style, Behaviors, Appearance/Aesthetics, etc.) a. You stated earlier that you usually check (blank ethnicity) when answering questions about your ethnic identity. Can you tell me about a time being/identifying as (blank ethnicity) has impacted your/your family/your child’s health experiences? Your/your family/your child’s oral health experiences? b. Tell me about your/your family/ child’s in-home oral care routines? c. Can you talk about how you decided to put (child’s name) oral care practices into the routine? How have things changed over time? d. Can you tell me where you get your oral health information from? e. Please tell me the most important thing about oral health to you? G. Social Environment – (this domain will include interview questions that will cover topics such as Support Systems, Stigma, SES, etc.) a. Tell me about your support system for (child’s name). Who, if anyone, helps you with (child’s name) dental care? b. Many families who have children with Autism indicate that they’ve encountered stigma in some way; at some point…have you ever felt stigmatized as a result of (child’s name) diagnosis? Have you ever felt stigma based on your ethnicity? Can you tell me about it? c. If you met another parent trying to take their child to the dentist, what would you want them to know? 132 Appendix E: Joint Display Theme Survey (example) Interviews (example) Concordance/ Discordance Recommendation from Caregivers Knowledge Oral health link to chronic conditions answered correctly by less than half of all caregivers. “But just because a child is like, ‘I don't want to go to the dentist’, if they don't go, it could be horrible consequences on their health and their life”. Concordance Good Oral Health is Important: Caregivers recommend that other parents appreciate how important oral health is to their child’s general well-being by incorporating in-home oral practices into their routines, find a dentist that will serve their needs, and get dental coverage. Attitudes Overall, most respondents indicated that they care about oral health as much as general health. “…it's one of the most important things that they can give their child - good dental hygiene...” Concordance Good Oral Health is Important: Caregivers recommend that other parents appreciate how important oral health is to their child’s general well-being by incorporating in-home oral practices into their routines, find a dentist that will serve their needs, and get dental coverage. Attitudes Dental fear and anxiety was reported by half of the caregivers (51.2%) and their child (50.4%). “I don't want to go. I need to go. That's honest. And I will go, but I don't want to go. I don't want to sit there and it's like, ‘Okay. Are you going to have to pull teeth?’ Just issues that I have. It's like, ‘Okay. Well, you're going to give me this laundry list of things or things that I can't afford.’… So, you know, that's just stressful for me, to deal with the reality of the expense - along with, ‘How do we get this done?’” Concordance Partner with Team: Caregivers encourage other parents to partner with their child’s practitioners to improve their care. Improve patient-provider Relations: A key component of every health care interaction is the patient-provider relationship. Caregivers encourage practitioners to demonstrate patience and adaptability when serving children with autism. Attitudes Most of the participants (80%) reported that they “I guess it's because I don't want them to end Concordance Good Oral Health is Important: Caregivers recommend that other parents appreciate how 133 prioritize their child’s dental health over their own. up like me. Like be so young with cavities and missing teeth. And I know my momma didn't take us [to the dentist] a lot. So, I want to take them a lot” important oral health is to their child’s general well-being by incorporating in-home oral practices into their routines, find a dentist that will serve their needs, and get dental coverage. Attitudes The ASD group was asked if they believe that their child’s ASD makes oral care activities difficult to complete, most parents/caregivers (86.2%) reported in the affirmative “Maybe it's too much - the sound, the vibration. Keeping the toothpaste on the brush, and it's splattering on different parts of his mouth, I think probably might not be fun for him”. Concordance Partner with Team: Caregivers encourage other parents to partner with their child’s practitioners to improve their care. Practices Child in-home oral care practices: • 59% of children brush 2x/day • for at least 120 seconds (26.4%), • 65.6% usually floss Caregiver in-home oral care practices • 62.4% of caregivers brush 2x/day • for 120 seconds or more (34.4%), 56% regularly floss “So, obviously, initially it was like teaching him how to brush his teeth. So, home- based behavioral therapy helped with that. They helped with all that, and the flossing. And then we also use a fluoride rinse. So, he does that in the morning when he wakes up, and then he does that at night. He flosses usually once a day. He probably should do more than that. But, yeah, I think the dentist wanted him to do more than that.” Concordance Good Oral Health is Important: Caregivers recommend that other parents appreciate how important oral health is to their child’s general well-being by incorporating in-home oral practices into their routines, find a dentist that will serve their needs, and get dental coverage. Partner with Team: Caregivers encourage other parents to partner with their child’s practitioners to improve their care. Access The majority of respondents agreed (i.e., somewhat, strongly) that they can access dental services “I think the biggest thing for African Americans in the autism community is to Discordance Good Oral Health is Important: Caregivers recommend that other parents appreciate how important oral health is to their child’s general well-being by incorporating in-home oral 134 with relative ease, including: • finding their child a dentist (70.4%), • scheduling a dental appointment (71.2%), • accessing transportation (personal or public) (91.2%). • has affordable dental care (74.4%), dentist has business hours that work with their schedule (73.6%). find more resources to connect them with services for their kids rather than us having to look so hard to find them on our own. That's been our biggest experience and why I kind of get frustrated by the fact that I don't think he is as far along as he could have been only because we never got the right connections to people or the right resources to get it done.” practices into their routines, find a dentist that will serve their needs, and get dental coverage. Partner with Team: Caregivers encourage other parents to partner with their child’s practitioners to improve their care. Education/Training/Awareness: Caregivers recommend that dental professionals (e.g., dental practitioners, dental clinic staff) be knowledgeable about autism and how it may present in a dental clinic. Access Caregivers of the ASD group more strongly agreed with statements regarding access to: • affordable dental care • getting dental insurance for their child finding a dentist “…it’s hard finding someone that accepts our insurance that's within a reasonable distance from our house”. Discordance Good Oral Health is Important: Caregivers recommend that other parents appreciate how important oral health is to their child’s general well-being by incorporating in-home oral practices into their routines, find a dentist that will serve their needs, and get dental coverage. Health Education/Health Promotion: Caregivers suggest that oral health education and health promotion initiatives should be improved. Attitudes Parents/caregivers (89.6%) reported that they trust their child’s dentist. Those who indicated they did not trust their child’s dentist were all from the non-ASD group (10.4%). “I'm always a little skeptical when we go to the dentist. What are they going to find? It's kind of like when you bring your car in to get a checkup. Okay, they're going to find a $1,200 issue, or a $300 issue? You know what I'm saying?” Discordance Partner with Team: Caregivers encourage other parents to partner with their child’s practitioners to improve their care. Improve patient-provider Relations: A key component of every health care interaction is the patient-provider relationship. Caregivers encourage practitioners to demonstrate patience and adaptability when serving children with autism. 135 Attitudes Most caregivers (86.4%) agreed that their child receives high quality care from their dentist. “I'm running out of patience with them if they're running out of patience with [my child]” Discordance Partner with Team: Caregivers encourage other parents to partner with their child’s practitioners to improve their care. Improve patient-provider Relations: A key component of every health care interaction is the patient-provider relationship. Caregivers encourage practitioners to demonstrate patience and adaptability when serving children with autism. Education/Training/Awareness: Caregivers recommend that dental professionals (e.g., dental practitioners, dental clinic staff) be knowledgeable about autism and how it may present in a dental clinic. 136 Appendix F: Supplemental Resources (Examples) 137

Abstract (if available)

Abstract Oral health is a vital component of overall health, impacting quality of life. Targeting oral health is critical to improving the overall health of underserved populations. Children from underserved minoritized populations, such as African Americans, or those with special health care needs, including children with autism spectrum disorder (ASD; autism), are at even greater risk for experiencing oral health disparities. This project aims to determine the factors that impact oral care for African American children with and without autism through a mixed-method convergent parallel design. Black/African American caregivers of children aged 4 to 14 years with a diagnosis of ASD (n=65) and those without ASD [(non-ASD); n=60] participated in a survey. Eleven Black/African American caregivers of children with autism participated in qualitative interviews. Participants were recruited from social media, Research Match, and lists of individuals who enrolled in another study and agreed to be contacted about future research opportunities.
Results from the survey indicated that caregivers demonstrated some basic knowledge of oral health. Caregivers of children with autism answered significantly less correctly. Most respondents reported that they would like to increase their oral health knowledge. Caregivers care about oral health as much as general health. Dental fear and anxiety affect more than half of the participants. During the interviews, Black American caregivers of children with autism shared that maintaining good oral health practices, access to care and resources, and poor patient-provider relationships were barriers that affect the oral health experiences. They also offered recommendations to other parents (i.e., actively pursue care, partner with dental practitioners, and offer grace) and suggested that dental professionals increase awareness and training, be patient and adaptable, and utilize media to facilitate oral health education.
This dissertation explored engagement and access to routine occupations for underserved and under-researched groups. While many barriers to care were identified, additional research exploring this topic is crucial to the goal of eliminating disparity and moving towards health equity. Occupational scientists have a perspective on occupation that can aid in the creation and implementation of distinct interventions which may positively impact oral health for Black American families with children with and without autism.

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Asset Metadata

Creator Como, Dominique H. (author)

Core Title The intersection of oral care experiences, culture, and autism for Black American families: a mixed-methods study

School School of Dentistry

Degree Doctor of Philosophy

Degree Program Occupational Science

Degree Conferral Date 2022-08

Publication Date 07/24/2024

Defense Date 06/08/2022

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

Tag autism,Black American,culture,mixed methods,OAI-PMH Harvest,oral health

Format application/pdf (imt)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Cermak, Sharon (committee chair), Jones, Brandi (committee member), Lawlor, Mary (committee member), Polido, Jose (committee member), Stein Duker, Leah (committee member)

Creator Email dcomo@usc.edu,dominiquecomo@gmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-oUC111374355

Unique identifier UC111374355

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Document Type Dissertation

Format application/pdf (imt)

Rights Como, Dominique H.

Type texts

Source 20220728-usctheses-batch-962 (batch), University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

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