Involvement of Racially and Ethnically Minoritized Youths in Behavioral Type 1 Diabetes Interventions: A Systematic Review.

OBJECTIVE: Psychosocial interventions targeting glycemic health in youth with type 1 diabetes (T1D) have been promising. Nonetheless, disparities in T1D treatment and outcomes are pervasive among racially/ethnically minoritized (REM) youth and a systematic review examining the inclusion of REM youth in psychosocial interventions is lacking. Therefore, the present systematic review examined the literature to determine the inclusion of REM youth with T1D in psychosocial interventions. METHODS: A systematic literature review was conducted per PRISMA guidelines for psychosocial intervention studies of youth (<19 years) with T1D between 2011 and 2022 using PubMed, PsycINFO, CINAHL, and MedLine. Tables of contents for JPP, CPPP, and Diabetes Care were also reviewed. The date last searched was April 26, 2022. Studies were examined for risk of bias using the QualSyst rating system. RESULTS: Twenty-four studies met inclusion criteria with a total of 3,117 participants. Studies utilized various psychological interventions (e.g., CBT, MI, behavioral modalities). Seventeen studies reported participants' race/ethnicity and eleven studies included >20% REM youth. CONCLUSIONS: One study examined the impact of interventions on REM youth or whether the intervention reduces existing racial/ethnic disparities. Implications for future research and practice are discussed.

Psychosocial Impact of the COVID-19 Pandemic in Racially/Ethnically Diverse Youth With Diabetes.

OBJECTIVE: This study examined caregiver perceived impact of the Coronavirus Disease 2019 (COVID-19) pandemic on a diverse sample of U.S. youth with diabetes and their families. METHODS: Caregivers of youth with diabetes completed an electronic survey in English or Spanish at two sites. Participants provided demographic and disease characteristics and completed the COVID-19 Exposure and Family Impact Scales (CEFIS). Glycemic health was assessed via Hemoglobin A1c (HbA1c) from medical chart review. Analysis of variance and analyses of covariance were utilized to examine racial/ethnic differences in glycemic health and in COVID-19 Exposure, Impact, and Distress scales. Hierarchical linear regression was conducted to predict HbA1c. Thematic analysis was conducted on open-ended responses regarding the effects of COVID-19 on youth and families' overall and diabetes-related well-being. RESULTS: Caregivers (n = 114) of youth with diabetes (M = 12.6 ± 3.5 years) completed study measures. Mean HbA1c for Non-Hispanic White youth was lowest and significantly different from Hispanic and Non-Hispanic Black youth. Exposure to COVID-19 stressors differed by race/ethnicity (p < .05) with Hispanic caregivers reporting greatest exposure. CEFIS scales did not predict HbA1c after controlling for demographic/disease variables. Caregivers described child/family changes during COVID (e.g., more time together, health-related hypervigilance), as well as differences in diabetes management during COVID-19. CONCLUSIONS: Findings indicate differences in COVID-19 exposure but did not demonstrate other racial/ethnic disparities in COVID-19 impact or distress. Household income was the most important predictor of glycemic health. Addressing structural inequalities experienced by youth with diabetes and their families is critical. Recommendations to support families with diabetes are made.

Featured Article: Comparison of Diabetes Management Trajectories in Hispanic versus White Non-Hispanic Youth with Type 1 Diabetes across Early Adolescence.

OBJECTIVE: Ethnic minority youth with type 1 diabetes (T1D) often have poorer glycemic control and lower rates of adherence compared to White Non-Hispanic (WNH) youth. Variables such as family conflict, autonomy support, and youth regimen responsibility have been shown to change over adolescence and impact diabetes management. However, these factors have been investigated in predominantly White samples. Few studies have examined potential differences in these variables and their trajectories for Hispanic youth over early adolescence. METHODS: Youth with T1D (178 WNH and 33 Hispanic youth participants), as well as their maternal caregivers (174 WNH and 32 Hispanic maternal caregivers), completed measures of diabetes-specific autonomy support, diabetes-related family conflict, regimen responsibility, and blood glucose monitoring frequency at 4 timepoints over a 3-year period. RESULTS: At baseline, Hispanic youth had significantly poorer glycemic control, more family conflict, and fewer blood glucose checks on average compared to WNH youth. Similar to WNH youth, Hispanic youth have increasing independence for regimen tasks and decreasing parent autonomy support during this developmental period. However, while Hispanic youth had worsening diabetes management during early adolescence (as did WNH youth), Hispanic parents reported a more gradual change in youth's diabetes management over early adolescence. CONCLUSIONS: This study presents an important contribution to the existing literature on youth with T1D. Findings suggest potential strengths and targets for Hispanic youth navigating diabetes management during the adolescent period. It is important to continue to investigate the trajectories of ethnic minority youth with diabetes.

Topical Review: Provider-Patient Interactions: An Important Consideration for Racial/Ethnic Health Disparities in Youth.

OBJECTIVE: To summarize literature on the role of provider-patient interactions (PPI) in racial/ethnic health disparities and consider the relevance of PPI for understanding health disparities in pediatric psychology. METHODS: Topical review of literature focusing on health disparities and PPI in adult and pediatric populations. RESULTS: For adults, evidence is clear that racial/ethnic minorities experience poorer quality PPI, which may be associated with poorer health outcomes. In pediatric populations, the emerging literature indicates similar associations, and potential promising targets for intervention including information exchange, shared decision-making and patient-centered communication. PPI research in pediatric populations poses a number of methodological challenges including culturally and developmentally sensitive measurement of triadic (caregiver, patient, provider) interactions. CONCLUSIONS: Health disparities in PPI exist for racial/ethnic minority youth and may contribute to poorer health outcomes. Pediatric psychologists can make valuable contributions, given their expertise and role within medical settings. Research, clinical, and policy recommendations are discussed.

Applicability of the SMART Model of Transition Readiness for Sickle-Cell Disease.

OBJECTIVES: This study aimed to examine the applicability of the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) model for adolescents and young adults (AYA) with sickle-cell disease (SCD). METHODS: 14 AYA with SCD (14-24 years old) and 10 clinical experts (6-20 years of experience) completed semi-structured interviews. AYA completed brief questionnaires. Interviews were coded for themes, which were reviewed to determine their fit within the SMART model. RESULTS: Overall, most themes were consistent with the model (e.g., sociodemographics/culture, neurocognition/IQ, etc.). Factors related to race/culture, pain management, health-care navigation skills, societal stigma, and lack of awareness about SCD were salient for AYA with SCD. CONCLUSIONS: Findings suggest the SMART model may be appropriate in SCD with the consideration of disease-related stigma. This study is a step toward developing a disease-specific model of transition readiness for SCD. Future directions include the development of a measure of transition readiness for this population.

Satisfaction with the Health Care Provider and Regimen Adherence in Minority Youth with Type 1 Diabetes.

To assess whether satisfaction with the health-care provider is related to regimen adherence among primarily minority youth with type 1 diabetes. Youth with type 1 diabetes (n = 169; M age = 13.88; 52 % female; 70 % Hispanic) and their parents completed questionnaires that assessed their own satisfaction with the health-care provider and youths' adherence to diabetes self-care behaviors. Higher youth and parent patient-provider relationship satisfaction was associated with higher regimen adherence. Gender affected the relationship between satisfaction and regimen adherence, such that for girls, greater satisfaction was associated with better adherence; this was not the case for boys. Patient satisfaction with the health care provider is important for regimen adherence among primarily minority youth with type 1 diabetes, particularly for girls. Future research might focus on improving youths' relationships with their health care providers as a potential pathway to improve regimen adherence.

Prevalence of and disparities in barriers to care experienced by youth with type 1 diabetes.

OBJECTIVE: To describe the prevalence of access and process barriers to health care and to examine their relationship to sociodemographic and disease factors in a large and diverse cohort of US youth with type 1 diabetes. STUDY DESIGN: A cross-sectional analysis of 780 youth who participated in the SEARCH for Diabetes in Youth Study and were diagnosed with type 1 diabetes in 2002-2005. Experience of barriers to care was collected from parent report on questionnaires. Analyses included multivariate regression models to predict the presence of specific barriers to care. RESULTS: Overall, 81.7% of participants reported at least one barrier; the 3 most common were costs (47.5%), communication (43.0%), and getting needed information (48.4%). Problems with access to care, not having a regular provider, and receiving contextual care (care that takes into account personal and family context) were associated with poorer glycated hemoglobin levels. Adjusted multivariate models indicated that barriers related to access (regular provider, cost) were most likely for youth with low family income and those without public health insurance. Barriers associated with the processes of quality care (contextual care, communication) were more likely for Hispanic youth and those whose parents had less education. CONCLUSIONS: This study indicates that a large proportion of youth with type 1 diabetes experience substantial barriers to care. Barriers to access and those associated with processes of quality care differed by sociodemographic characteristics. Future investigators should expand knowledge of the systemic processes that lead to disparate outcomes for some youth with diabetes and assess potential solutions.

Shared decision-making among caregivers and health care providers of youth with type 1 diabetes.

The present study aimed to examine perceptions of shared decision-making (SDM) in caregivers of youth with type 1 diabetes (T1D). Interview, survey data, and HbA1c assays were gathered from caregivers of 439 youth with T1D aged 3-18 years. Caregiver-report indicated high perceived SDM during medical visits. Multivariable linear regression indicated that greater SDM is associated with lower HbA1c, older child age, and having a pediatric endocrinologist provider. Multiple logistic regression found that caregivers who did not perceive having made any healthcare decisions in the past year were more likely to identify a non-pediatric endocrinologist provider and to report less optimal diabetes self-care. Findings suggest that youth whose caregivers report greater SDM may show benefits in terms of self-care and glycemic control. Future research should examine the role of youth in SDM and how best to identify youth and families with low SDM in order to improve care.

Understanding the experiences of youth living with sickle cell disease: a photovoice pilot.

A Photovoice pilot was conducted with youth living with sickle cell disease (SCD), in order to further understand their lived experience and examine the acceptability, feasibility, and utility of this method in this population. SCD is an inherited genetic condition whose primary symptom is severe pain. Youth were able to reflect on their experiences with SCD using Photovoice and the adapted SHOWeD method. Parents and youth found Photovoice to be valuable for children and adolescents with SCD. Emerging themes included the impact of SCD, the importance of everyday activities and interests, and the importance of family and support.

Prescribed regimen intensity in diverse youth with type 1 diabetes: role of family and provider perceptions.

Recent literature suggests that disparities in prescribed treatments may exist for youth with type 1 diabetes. There is limited research to date examining factors associated with prescribed regimen intensity in this population. In this study, we examined racial/ethnic differences in regimen intensity and predictors of regimen intensity in youth with type 1 diabetes. We expected that minority youth would have less intensive regimens and that caregiver and physician perceptions would be associated with regimen intensity. This cross-sectional study included 178 families of 10- to 17-yr-old youth at three endocrinology clinics. Caregivers reported perceived costs and benefits of intensive regimens. Physicians described the prescribed treatment and their perceptions of family/child competence and self-management. Analyses included analysis of covariance and hierarchical multiple linear regression. Findings indicate a disparity in regimen intensity for minority youth. Caregiver perceptions of costs associated with intensive regimens and physician perceptions of family competence are associated with prescribed regimen intensity. Interventions targeting disparities in prescribed regimen intensity should be considered. Further research is needed to understand the role of family perceptions of treatments and physician clinical decision making in addressing health disparities in type 1 diabetes.

Transition to adult services among behaviorally infected adolescents with HIV--a qualitative study.

OBJECTIVES: The present study aimed to describe the experiences of youth with behaviorally acquired HIV who transitioned to adult care, to identify difficulties encountered, and to explore areas for improvement. METHODS: Semi-structured interviews were conducted with 10 young adults ranging from 24 to 29 years old. Themes were derived from coding participant interviews. RESULTS: Participants experienced adolescent care providers as an important source of support, felt anxiety about transition, provided recommendations for improving the process, and described significant changes associated with adult HIV care. CONCLUSIONS: Findings support the development of a clear and structured transition process to address patients' fears and worries through early communication, planning, and coordination for adult healthcare, highlighting the need for future research in this area.

Parents' Perceptions of and Responses to School-Based Body Mass Index Screening Programs-A Systematic Review.

BACKGROUND: Evidence for the effectiveness of state-mandated body mass index (BMI) screening programs in the United States has been inconclusive, and potential unintended consequences of the programs have been debated. The present review aims to understand parents' perceptions of and responses to school-based BMI screening, and to highlight racial/ethnic differences. METHODS: We systematically identified studies published January 2003-May 2019 examining parent and/or youth perceptions of and/or responses to US school-based BMI screening. RESULTS: A total of 16 studies were included in the review. Studies suggested that while parents largely found BMI screening helpful, they held concerns regarding stigma, lack of privacy, and unhealthy behaviors and attitudes resulting from school-based screening. Furthermore, parents did not frequently follow-up with health care providers, although they reported some healthy behavior changes. CONCLUSIONS: Our review highlights existing parent perceptions of school-based BMI screening including the potential for healthy behavior change and important concerns regarding weight-stigma and disturbed eating attitudes/behaviors. Additionally, racial/ethnic differences in screening preferences and experiences were found. Limitations of existing literature included a need to understand youths' experiences and a lack of standardized, reliable outcomes research. Implications for future research and the role of parents, schools, and providers are discussed.

Confirmatory factor analysis of the Child Feeding Questionnaire among low-income African American families of preschool children.

This study examined the factor structure for three of the Child Feeding Questionnaire (CFQ) subscales, a widely used measure of parental feeding practices, among 296 low-income parents of African American preschool children. Confirmatory factor analysis showed an overall poor fit among CFQ subscales; Restriction, Pressure to Eat, and Concern about Child Weight, (chi(2), (df=87=300.249, CFI=1.00, NNFI=1.07, RMSEA=.091). Additionally, Cronbach's Alpha coefficients for 2 of the three subscales were below acceptable recommendations (Restriction=0.69; Pressure to Eat=0.58). These results suggest further psychometric clarification is needed to understand commonly reported feeding practice constructs among low-income African American mothers of preschool aged children.

Assessing disparities in barriers to attending pediatric diabetes camp.

OBJECTIVES: While the benefits of diabetes camp programs are well established, minority youth are underrepresented in camp attendance. No research to date has explored barriers to camp attendance or potential disparities in those barriers. Further, little is known about sources families prioritize in seeking diabetes information and support. METHODS: This was a prospective survey of families of children with type 1 diabetes (T1D) using convenience sampling during normally-scheduled clinic visits. Thirty-nine children and their caregivers completed the survey. Results were analyzed for prevalence and mean number of reported barriers, benefits, and diabetes information networks. RESULTS: Age range was 5-15 years and mean duration of diabetes was 2.9 years (0.4-9y). The most prevalent barriers were location, cost, and concern about sending children to overnight camp. Caregivers had high level of knowledge of camp benefits. Participants reported engaging with the diabetes community through interactions with their diabetes team, Facebook groups, and the JDRF. CONCLUSION: Increasing awareness, transportation assistance, and scholarship funding all may increase accessibility of diabetes camps. Diabetes clinic and online or social media groups are both acceptable means of disseminating information about diabetes camp. Further research is indicated to verify if these results are applicable to the larger diabetes community.

Racial Ethnic Disparities in Youth With Type 1 Diabetes Participating in Diabetes Summer Camps.

OBJECTIVE: Diabetes camps are beneficial for campers and include benefits such as increases in diabetes knowledge, glycemic control, and psychological functioning. Racial/ethnic minority youth are likely to have poorer disease management and glycemic control. We hypothesized that minority youth with type 1 diabetes have reduced participation in diabetes summer camps. RESEARCH DESIGN AND METHODS: We analyzed deidentified data from 5,256 campers with type 1 diabetes who participated in a network of 48 American Diabetes Association-affiliated summer camps in 2018, and we compared participation rates by racial/ethnic category to the most recent SEARCH for Diabetes in Youth study prevalence rates. RESULTS: Camper demographics were significantly different than in the general population of children with type 1 diabetes (P < 0.001). Minority youth were more likely to attend day camp, be first-time campers, and request financial aid, and they were less likely to be on insulin pump therapy or use continuous glucose monitors. CONCLUSIONS: Racial/ethnic minority youth with diabetes are underrepresented in diabetes camps nationwide.

Diabetes Camp Counselors: An Exploration of Counselor Characteristics and Quality of Life Outcomes.

Purpose The purpose of this study is to investigate the effect of volunteering at a diabetes camp on emerging adults with and without type 1 diabetes mellitus (T1DM). Methods Thirty counselors with and 22 without T1DM (19.07 ± 2.71 years old) volunteered at a 1-week T1DM camp in the northeastern United States. Counselors with T1DM had a range of self-reported A1C scores (5.8% or 39.9 mmol/mol to 14.0% or 129.5 mmol/mol). Self-report measures of quality of life, hope, and well-being were completed pre- and postcamp at 4 time points: 1 month before camp, arrival at camp, final day of camp, and 2 months postcamp. Open-ended questions regarding counselor experiences were analyzed to understand camp effect. Results There were significant differences between counselors' levels of trait hope in comparison to published norms. There were few clear differences in psychosocial outcomes pre- and postcamp; however, some increases in well-being were revealed in anticipation of camp. Major reasons for volunteering included assisting others and reciprocating or continuing a perceived positive experience as a camper. Conclusion No changes in psychosocial outcomes pre- to postcamp were observed. However, measures used in this study may be poorly defined for a counselor population. Further research on the characteristics of emerging adults who choose to be camp counselors is needed. By understanding the demographics of this population, health professionals can help target individuals to become camp counselors as well as enhance the camp experience to fit their developmental needs.

¡Hazlo bien! A participatory needs assessment and recommendations for health promotion in growing Latino communities.

PURPOSE: To investigate the health needs of a rapidly growing Latino community and understand priorities for developing culturally sensitive health promotion strategies. APPROACH: A participatory research approach was selected to understand health challenges and opportunities for health engagement in the community. SETTING: Norwood, Ohio, a small community in southwest Ohio. PARTICIPANTS: Latino adults living, working, or accessing services in Norwood. METHOD: Trained community researchers collected survey data from 198 participants at multiple community "points of contact" and door-to-door in more isolated neighborhoods. Survey data were aggregated using descriptive statistics. Two focus groups were conducted with 25 community members, transcribed, and analyzed using principles of thematic analysis. Participants' health concerns, health behaviors, and access to/experiences with health care were assessed. RESULTS: Findings indicated significant health concerns, including overweight (43.2%) and obesity (28.6%), mental health challenges (anxiety 15.7%; depression 15.0%), and oral health concerns (23.0%). In addition, community members described barriers to accessing health care and strategies for preventing health problems and promoting positive health. Participants also discussed perceived discrimination and the need to address isolation within their community. CONCLUSION: Methods and findings from the ¡Hazlo Bien! participatory needs assessment are likely to be useful to those designing health promotion programs in quickly growing Latino communities where there are limited health services and few existing social support networks.

Strategies for Recruitment and Retention of Families from Low-Income, Ethnic Minority Backgrounds in a Longitudinal Study of Caregiver Feeding and Child Weight.

BACKGROUND: Children from low-SES and ethnic minority backgrounds are at heightened risk for overweight, yet are underrepresented in the pediatric obesity literature. METHODS: The current paper describes strategies employed to minimize barriers to recruitment and retention of African-American families receiving WIC services in a longitudinal study examining caregiver feeding and child weight. RESULTS: Seventy-six families enrolled in the study over 3.5 years, and 50% of the families completed the study. IMPLICATIONS FOR PRACTICE: Despite effortful planning, unanticipated barriers likely contributed to lengthy recruitment and a modest retention rate. Future research should incorporate lessons learned to modify and develop effective strategies for increasing engagement of low-SES and ethnic minority families in research.