Can social support mediate stigma and perceived stress in people live with human immunodeficiency virus?

Stigma has heavily impacted People Living with HIV (PLWH). Limited studies report on how social support affects HIV-related stigma and perceived stress, especially in Myanmar. During first seven months of 2020, a random sample of 248 eligible PLWH were contacted from a private, closed Facebook group with more than 18,000 Myanmar people, where 90% of the members were PLWH. Variables collected included demographics data, perceived stress, social support, and HIV stigma. After controlling for the effects of demographic variables, the path from HIV stigma to perceived stress (direct effect ß = 0.40) and though the mediation of social support was significant (indirect effect ß = 0.014). However, the mediating effect of social support was non-significant between HIV stigma and perceived stress. This exploratory study shows that social support did not have the expected effect of decreasing perceived stress in PLWH in Myanmar. Interventions to reduce HIV stigma to decrease perceived stress should consider other strategies, e.g., spirituality-based practice, to reduce perceived stress in Myanmar PLWH.

Medical clowning influences the emotions of parents of children undergoing cancer treatment: A quasi-experimental study.

BACKGROUND: Medical clowning for children has been found to be effective at enhancing parents' psychological well-being during preoperative preparation, but has not been found during cancer treatment. This study aimed to examine whether and how medical clowning influenced the emotions of parents of children undergoing cancer treatment. METHODS: In this quasi-experimental study, 96 parents of children receiving inpatient cancer treatment were recruited, from June 2018 through April 2020. A demographic questionnaire measuring characteristics of parent and dyadic child, Brief Symptom Rating Scale measuring psychological distress of the parent, and Mood Assessment Scale measuring emotional status of parent and child were administered 1 day before a clowning service. The day after the clowning service, the Mood Assessment Scale again collected emotional status for parent and child. Descriptive analysis, bivariate analysis, and structural equation modeling to fit the actor-partner, cross-lagged model were used. FINDINGS: Parents experienced a low degree of psychological distress that called for emotional management. The indirect effect of medical clowning on parents' emotions through children's emotions was significant, as were the direct effect and total effect of medical clowning on parents' emotions. DISCUSSION: Parents experienced psychological distress during their child's inpatient cancer treatment. Medical clowning can directly improve children's emotions and through this pathway indirectly improve their parents' emotions. APPLICATION TO PRACTICE: There is need to monitor psychological distress and provide interventions for parents of children undergoing cancer treatment. Medical clowns should continue to serve parent-child dyads in pediatric oncology practice and become members of multidisciplinary health care teams.

Longitudinal trajectory of the association between quality of life and depression among people living with HIV in China: a mixed effects model.

ABSTRACTAlthough depression has been associated with low QOL, limited research has quantified the change of depression to improvement of QOL among naïve PLHIV using ART in Shanghai, China. This study examined the association between depression symptoms and QOL among Chinese PLWH in a six-month longitudinal study. Data were collected from 111 people living with HIV at baseline, 3rd month and 6th month after initiating ART, using the WHOQOL-HIV BREF and the Center for Epidemiologic Studies Depression Scale (CES-D), and analyzed using a mixed effects model. QOL is improved after initiating ART, while the symptoms of depression did not decrease significantly. The depression symptoms were strong and negatively associated with QOL and all domains of QOL, and the strength of this association decreased over time in the six months follow-up. ART had different impacts on depression symptoms and QOL. Besides, depression symptoms were strong and negatively associated with QOL among PLHIV over time. Mental health practitioners and nurses should consider the ART and time factors when designed interventions to improve QOL by targeting depression symptoms. Interventions designed to improve QOL and depression symptoms should be developed targeting both ART and self-management among PLHIV.

The effectiveness of a medical clowning program on improving emotional status among hospitalized children undergoing cancer treatment: A quasi-experimental study.

PURPOSE: To examine the effectiveness of one-time medical clowning on improving short-term positive emotions among hospitalized children undergoing cancer treatment, and to analyze whether age moderates this effect. DESIGN: In this quasi-experimental research study, we recruited a pooled sample of 96 children who were undergoing cancer treatment in pediatric oncology/hematology wards at three university-affiliated medical centers in Taiwan from June 2018 through April 2020. METHODS: Children's demographic characteristics, symptom distress, quality of life, and pretest emotional status were collected at T1. At T2, we collected only posttest emotional status. We adapted generalized estimating equation models to evaluate the effectiveness of medical clowning on enhancing positive emotions. FINDINGS: Changes in the probabilities of positive emotion were significantly different across groups (51.84% for the experimental group, 15.76% for the control group; Δ = 36.08, p = 0.001), and the change was more than two times larger for the experimental group (effect ratio = 3.28, p < 0.05) than for the control group. When evaluating the moderating effect of age on the intervention, none of the coefficients reached the significant (p < 0.05) levels, suggesting that age may not moderate the intervention effect. CONCLUSION: This study demonstrates the core value of medical clowning in child-friendly health care. Our findings clearly support the benefit of the one-time medical clowning program on enhancing short-term emotional well-being across age groups of children. Medical clowning programs should be strongly encouraged and supported in pediatric oncology wards. CLINICAL RELEVANCE: Medical clowning programs should be widely and continuously implemented in pediatric oncology wards as a routine clinical practice for enhancing emotional well-being among children receiving cancer treatment. Nurses need to be aware of medical clowning's equal effectiveness across age groups, not only or better for younger children.

Physical symptoms and sleep disturbances activate coping strategies among HIV-infected Asian Americans: a pathway analysis.

How to activate adaptive coping strategies has an important and practical meaning for the quality of life of people living with HIV (PLHIV); however, few studies have focused on the effects of sleep disturbances and HIV-related physical symptoms on coping strategies. The specific relationships among coping strategies, sleep disturbances and HIV-related physical symptoms were unknown. We performed a path analysis to examine the proposed model of relationships among sleep disturbances, physical symptoms, and coping strategies. A convenience sample of 69 HIV-positive Asian Americans in San Francisco, Los Angeles, and New York City were recruited and data were collected on demographics, sleep disturbances, HIV-related physical symptoms, and coping strategies. Sleep disturbances directly affect maladaptive coping (ß = 0.34), and physical symptoms directly affect adaptive coping (ß = 0.30) and maladaptive coping (ß = 0.24). Interventions designed to decrease sleep disturbances and physical symptoms should be developed to enhance adaptive coping and reduce maladaptive coping among Asian Americans with HIV.

Adaptation and validation of a culturally adapted HIV stigma scale in Myanmar.

BACKGROUND: HIV stigma is a common barrier to HIV prevention, testing, and treatment adherence, especially for low- and middle-income countries such as Myanmar. However, there was no validated Myanmar version of a stigma scale. Therefore, we adapted the English version of the 40-item Berger's HIV stigma scale and the 7-item Indian HIV stigma scale into a 47-item Myanmar HIV stigma scale and then evaluated the scale's psychometric properties. METHOD: From January 2020 to May 2020, using random sampling methods, 216 eligible Myanmar people living with HIV/AIDS (PLWHA) were contacted from a closed Facebook group that included more than 10,000 PLWHA. A sample of 156 Myanmar PLWHA completed the online self-reported survey. RESULTS: A six-factor structure for the scale was determined through exploratory factor analysis, explaining 68.23% of the total variance. After deleting 12 items, the 35-item HIV stigma scale achieved Cronbach 's α of 0.72 to 0.95. Construct validity of the scale was demonstrated by significant association with self-reported depression and social support levels (r = 0.60, and - 0.77, p < 0.01). In Rasch analysis, the scale achieved person reliability of 3.40 and 1.53 and a separation index of 0.92 and 0.70. The infit and outfit mean squares for each item ranged from 0.68 to 1.40. No differential item functioning across gender or educational level was found. CONCLUSIONS: The psychometric properties of the 35-item Myanmar version of the HIV stigma scale support it as a measure of stigma among PLWHA in Myanmar. This instrument could help healthcare providers to better understand how stigma operates in PLWHA and to develop tailored stigma-reduction interventions in Myanmar.

Adverse Childhood Experiences Are Associated with Unmet Healthcare Needs among Children with Autism Spectrum Disorder.

OBJECTIVE: To explore associations between level of adverse childhood experiences (ACEs) and unmet healthcare needs among children with autism spectrum disorder (ASD) using a population-based sample. STUDY DESIGN: Cross-sectional data from the 2011-2012 National Survey of Child Health were analyzed to estimate prevalence of unmet healthcare needs among children with ASD, aged 2-17 years (ASD = 1624; estimated population = 1 174 871). Multivariate Poisson and logistic regression models were used to estimate the relationship between reported ACEs and unmet healthcare needs among children with ASD. RESULTS: After we adjusted for all other variables, children with ASD who experienced 1-2 ACEs and 3+ ACEs were associated with 1.78 (P < .05) and 2.53 (P < .01) times the incidence rate of unmet healthcare needs in comparison with children without ACEs. Compared with children who experienced 0 ACEs, the adjusted odds of any unmet healthcare need were 2.34 (P < .01) and 2.66 (P < .01) for children with 1-2 ACEs and 3 + ACEs, respectively. CONCLUSION: Although limited to cross-sectional data, our study provides compelling evidence on the link between ACEs and unmet healthcare needs among children with ASD. It advances understanding of risk factors in the child and community context that contribute to health disparities and negatively impact healthcare access and use in this population.

The Development of a Brief Distress Reduction Intervention for Individuals Recently Diagnosed With HIV in China.

In China, where there are few mental health resources, the majority of HIV-related efforts have focused on medical treatment and transmission prevention rather than psychosocial support. Yet people living with HIV/AIDS (PLWHA) report high levels of psychological distress, especially upon first receiving their HIV diagnosis. We conducted mixed methods research of a qualitative study with (N = 31) individual interviews and 3 focus groups (n = 6 in each group) of HIV-affected participants, and a quantitative survey (N = 200) with individuals living with HIV in Shanghai and Beijing, China. Our qualitative data revealed themes of forms of distress experienced and types of psychosocial support that our participants wished they could have accessed upon diagnosis as well as suggestions for intervention structure that would be most feasible and acceptable. Our quantitative surveys provided further evidence of the high degree of psychosocial distress among recently diagnosed PLWHA. Our findings informed the development of the Psychology Toolbox intervention, a brief CBT skills-based intervention comprising cognitive restructuring, behavioral activation, and paced breathing, designed to be integrated into primary care for recently diagnosed PLWHA. This study describes the intervention development process and contents of each session. Future research should evaluate the intervention for efficacy as well as examine best strategies for eventual implementation and dissemination.

Unable to be a Human Being in Front of Other People: A Qualitative Study of Self-Isolation Among People Living with HIV/AIDS in China.

In China, acute stigma accompanying an HIV diagnosis can lead to self-isolation. In a cultural setting where family relationships are highly valued and contribute critically to well-being, such self-isolation can thwart HIV self-management and engagement in medical care, and so heighten risk for health disparities. To understand this phenomenon, we conducted individual in-depth interviews with 34 persons living with HIV/AIDS (PLwHA) in Shanghai and Beijing. Inductive content analysis revealed a range of forms of self-isolation motivation, beliefs, and behaviors influenced by: 1) internalized stigma and desire to avoid discrimination; 2) HIV-related factors such as HIV knowledge and disease progression; and 3) familial factors such as a sense of responsibility and family members' reactions. Based on a proposed framework centering on dialectical family influences (whereby PLwHA are pushed away from, yet pulled toward the family fold), implications for provision of multidisciplinary care in medical settings are considered, including culturally appropriate strategies to decrease health disparities.

A Mixed-Methods Study Supporting a Model of Chinese Parental HIV Disclosure.

Parents who are HIV-positive confront difficult decisions regarding whether, when, and how to disclose their HIV status to their children. In China, a setting of acute HIV stigma where family harmony is culturally valued, limited research has been conducted on parental disclosure. We aimed to develop a model of parental disclosure that accounts for the cultural context in China based on a mixed-methods study. In our individual, in-depth interviews (N = 24) as well as survey data (N = 84) collected from parents living with HIV in Shanghai and Beijing, we found the primary barriers to disclosure were stigma, fear of exposing the mode by which they acquired HIV, psychologically burdening the child, rejection by the child, and negative social consequences for the family. Parents concurrently cited many motivations for disclosure, such as disease progression, ensuring safety of the child, gaining assistance, and fulfilling their parental responsibility. Most parents had not actively disclosed their HIV status (68 %); many parents reported some form of partial disclosure (e.g., sharing they have a blood disease but not labeling it HIV), unplanned disclosure, or unintentional disclosure to their children by other people. Findings informed the development of a Chinese Parental HIV Disclosure Model, with primary components accounting for distal cultural factors, decision-making (balancing approach and avoid motivations), the disclosure event, and outcomes resulting from the disclosure. This model highlights the cultural context of the Chinese parental disclosure process, and may be useful in guiding future observational research and intervention work.

Disparities in adversity among children with autism spectrum disorder: a population-based study.

AIM: People with autism spectrum disorders (ASDs) experience disparities in health. An important but overlooked risk factor for health disparities in the ASD population is adverse childhood experiences (ACEs). The purpose of this study was to identify the prevalence of ACEs among families of children with and without ASD, using a population-based sample. METHOD: Data from the 2011 to 2012 National Survey of Child Health were analyzed to estimate prevalence of ACEs among families of children with and without ASD, age 3 to 17 years (ASD=1611; estimated population=1 165 34). The child's ASD status was obtained from parent report; ACEs were assessed with the modified Adverse Childhood Experiences Scale. Bivariate and multinomial logistic regression analyses were utilized to investigate the relationship between ACEs and childhood ASD status. RESULTS: ASD status among children was significantly and independently associated with higher probability of reporting one to three ACEs (adjusted relative risk ratio [aRRR] 1.53; 95% CI: 1.16-2.0; p<0.010) and four or more ACEs (aRRR 1.99; 95% CI: 1.35-2.91; p<0.010). INTERPRETATION: Children with ASD may experience a greater number of family and neighborhood adversities, potentially compromising their chances for optimal physical and behavioral health outcomes. Assessment and reduction of ACEs among families of young people with ASD could potentially contribute to the reduction of population health disparities.

"Please Don't Make Me Ask for Help": Implicit Social Support and Mental Health in Chinese Individuals Living with HIV.

China faces a growing HIV epidemic; psychosocial needs of HIV-positive individuals remain largely unaddressed. Research is needed to consider the gap between need for mental healthcare and lack of sufficiently trained professionals, in a culturally acceptable manner. This study assessed explicit and implicit forms of social support and mental health symptoms in 120 HIV-positive Chinese. Explicit social support refers to interactions involving active disclosure and discussion of problems and request for assistance, whereas implicit social support refers to the emotional comfort one obtains from social networks without disclosing problems. We hypothesized and found using multiple linear regression, that after controlling for demographics, only implicit, but not explicit social support positively predicted mental health. Future research is warranted on the effects of utilizing implicit social support to bolster mental health, which has the potential to circumvent the issues of both high stigma and low professional resources in this population.

Victimization and restricted participation among young people with disabilities in the US child welfare system.

AIM: The aim of this study was to assess the role of disability and victimization in young people's participation in developmentally salient activities by analyzing a nationally representative group of young people from the child welfare system (CWS). METHOD: Data were obtained from interviews with young people and their parents, recorded by the second National Survey of Child and Adolescent Well-Being (NSCAW II). The sample group consisted of 405 females and 270 males, ranging in age from 11 to 17 years (mean age 13y 6mo), and residing with families throughout the USA. The relationships among disability status, victimization, and participation were explored using weighted logistic regression analysis. RESULTS: Controlling for demographical and family-related factors, the probability of young people with disabilities (YWD), involved with the CWS, reporting two or more victimizations was 120% higher (p<0.01) than that of young people without disabilities. YWD in the CWS were almost twice as likely as young people without disabilities to report participation in only one or no developmentally salient activities. Controlling for all other variables, the odds of restricted participation were 6.8-fold higher (p<0.05) for victimized YWD in the CWS. INTERPRETATION: Young people with disabilities who report victimization are significantly less likely than their typically developing peers to participate in developmentally salient activities. Without coordinated efforts to prevent victimization of YWD in the CWS, there will be significant barriers to their participation, well-being, and independent living outcomes.

Factor analyses of a social support scale using two methods.

PURPOSE: Evaluation and comparison of the factor structure of the Medical Outcomes Study Social Support Survey (MOS-SSS) using both confirmatory factor analysis (CFA) and exploratory factor analysis (EFA) with two samples of people living with HIV/AIDS in China. METHODS: Secondary analyses were conducted with data from two comparable samples of 320 people living with HIV/AIDS from the same hospital using the same inclusion criteria. The first sample of 120 was collected in 2006, and the second sample of 200 was collected in 2012. For each sample, CFA was first performed on the original four-factor structure to check model fit, followed by EFA to explore other factor structures and a subsequent CFA for model fit statistics to be compared to the original four-factor CFA. RESULTS: In both samples, CFA on the originally hypothesized four-factor structure yielded an acceptable model fit. The EFA yielded a two-factor solution in both samples, with different items included in each factor for the two samples. Comparison of CFA on the a priori four-factor structure and the new two-factor structure in both samples indicated that both factor structures were of acceptable model fit, with the four-factor model performing slightly better than the two-factor model. CONCLUSION: Factor structure of the MOS-SSS is method-dependent, with CFA supporting a four-factor structure, while EFA yielded a two-factor structure in two separate samples. We need to be careful in selecting the analytic method when applying the MOS-SSS to various samples and choose the factor structure that best fits the theoretical model.

Revising the American dream: how Asian immigrants adjust after an HIV diagnosis.

AIM: We explored how acculturation and self-actualization affect depression in the HIV-positive Asians and Pacific Islanders immigrant population. BACKGROUND: Asians and Pacific Islanders are among the fastest growing minority groups in the USA. Asians and Pacific Islanders are the only racial/ethnic group to show a significant increase in HIV diagnosis rate. DESIGN: A mixed-methods study was conducted. METHODS: Thirty in-depth interviews were conducted with HIV-positive Asians and Pacific Islanders in San Francisco and New York. Additionally, cross-sectional audio computer-assisted self-interviews were conducted with a sample of 50 HIV-positive Asians and Pacific Islanders. Content analysis was used to analyse the in-depth interviews. Also, descriptive, bivariate statistics and multivariable regression analysis was used to estimate the associations among depression, acculturation and self-actualization. The study took place from January-June 2013. DISCUSSION: Major themes were extracted from the interview data, including self-actualization, acculturation and depression. The participants were then divided into three acculturation levels correlating to their varying levels of self-actualization. For those with low acculturation, there was a large discrepancy in the Center for Epidemiologic Studies Depression Scale scores between those who had totally lost their self-actualization and those who believed they could still achieve their 'American dreams'. Among those who were less acculturated, there was a significant difference in depression scores between those who felt they had totally lost their ability to self-actualize and those who still believed they could 'make their dreams come true.' CONCLUSION: Acculturation levels influence depression and self-actualization in the HIV-positive Asians and Pacific Islanders population. Lower acculturated Asian Americans achieved a lower degree of self-actualization and suffered from depression. Future interventions should focus on enhancing acculturation and reducing depression to achieve self-actualization.

Psychometric testing of the Chinese version of the Medical Outcomes Study Social Support Survey among people living with HIV/AIDS in China.

PURPOSE: The aim of this study was to assess the psychometric properties of the Chinese (Mandarin) version of the Medical Outcomes Study Social Support Survey (MOS-SSS-CM) among people living with HIV/AIDS (PLWHA) in Mainland China. METHODS: A cross-sectional study was conducted with a convenience sample of 200 Chinese PLWHA. They completed the MOS-SSS-CM along with the Chinese version of the Beck Depression Inventory Revised (BDI-II) scale, the Zung Self-Rating Anxiety Scale (SAS), the Perceived Stress Scale (PSS-10), and the World Health Organization Quality of Life Brief (WHOQOL-BREF) scale. RESULTS: Internal consistency (Cronbach's α) was 0.97 for the overall MOS-SSS-CM and 0.82-0.91 for the five subscales originally proposed. However, 11 of the 19 items demonstrated unsatisfactory item discriminant validity. An exploratory factor analysis yielded a two-factor solution with tangible and social-emotional dimensions, which demonstrated satisfactory reliability and better discrimination between different subscales than did the original five-factor model. The concurrent validity of the two-factor scale was further confirmed by its significant negative correlations with the BDI-II (r=-0.41, p<0.01); the SAS (r=-0.27, p<0.01); and the PSS-10 (r=-0.30, p<0.01), and significant positive correlation with the WHOQOL-BREF scale (r=0.61, p<0.01). CONCLUSION: We found a two-factor solution for the MOS-SSS-CM, which demonstrated good reliability and validity when applied to Chinese PLWHA. This was consistent with results from a study of Taiwanese caregivers. Further validation in other populations and disease states is warranted.

Curvilinear relationship between depression and unprotected sexual behaviors among men who have sex with men.

INTRODUCTION: The relationship between depressive symptomatology and risky sexual behaviors has been controversial in literature. AIM: The current study aims to reexamine the relationship between depression and sexual behaviors among men who have sex with men (MSM) using different sets of analytical assumption. METHODS: Six hundred twenty MSM were recruited in a lesbian, gay, bisexual, and transgender community center in Taiwan to participate in a cross-sectional survey. An additional variable of squared depressive symptomatology was used to detect nonlinearity between depressive symptomatology and logit-transformed unprotected anal intercourse (UAI) and unprotected oral sex (UOS). Multivariable logistic regression was applied to further estimate the relationship among the three variables. MAIN OUTCOME MEASURES: Depressive symptomatology was measured by the Beck Depression Inventory (BDI), UAI, and UOS. RESULTS: Depressive symptomatology had a nonlinear relationship with unprotected anal and oral sex. While linear BDI scores of MSM were not associated with unprotected sexual behaviors in the logistic model, their scores were significantly associated with unprotected sexual behaviors in the model that included both the linear (UAI, odds ratio [OR] = 1.087; P < 0.01; UOS, OR = 1.099, P < 0.01) and quadratic BDI scores (UAI, OR = 0.998, P < 0.01; UOS, OR = 0.997, P < 0.01). The relationship between BDI scores and the probability of unprotected sexual behaviors corresponded to an inverted U-shaped curve, as opposed to a straight line. CONCLUSIONS: Our findings suggest that depressive symptomatology has a significant curvilinear relationship with unprotected sexual behaviors. MSM with moderate levels of depression may be at elevated risk of engaging in unprotected sexual behaviors in comparison to their peers who exhibit either significantly higher or lower depression scores.

Acculturation and perceived stress in HIV+ immigrants: depression symptomatology in Asian and Pacific Islanders.

Asians and Pacific Islanders (API) are among the fastest growing minority groups within the USA, and this growth has been accompanied by an increase in HIV incidence. Between 2000 and 2010, the API HIV infection rate increased from 4.5% to 8.7%; however, there is a paucity of HIV-related research for this group, and even less is known about the prevalence and correlates of antiretroviral therapy adherence behavior, quality of life, impact of stress, and efficacious self-management among HIV+ API Americans. This paper examines how acculturation and perceived stress affect depression symptomatology and treatment seeking in the HIV+ API population. A series of cross-sectional audio computer-assisted self-interviews were conducted with a convenience sample of 50 HIV+ API (29 in San Francisco and 21 in New York City). The relationship between acculturation and perceived stress was analyzed, and the results indicate that for those HIV+ API who reported low or moderate acculturation (as compared to those who reported high acculturation), stress was significantly mediated by depression symptomology. Interventions to address acculturation and reduce perceived stress among API generally and Asians specifically are therefore needed.

Impact of Adverse Childhood Experiences and Mental Health on School Success in Autistic Children: Findings from the 2016-2021 National Survey of Children's Health.

PURPOSE: School is an important developmental setting for children. Adverse childhood experiences (ACEs) are linked to overall lower educational attainment and are more prevalent in children with Autism Spectrum Disorder (ASD) than in their neurotypical peers. The aim of this study is to test the association between ACEs and school outcomes among autistic children and whether mental health conditions explain this association. METHODS: We combined 2016-2021 data from the National Surveys of Children's Health for children, ages 6-17, identified by parents as having ASD (N = 4,997), to examine the relationship between ACEs and school outcomes (grade progression, school attendance, and engagement). We analyzed depression and anxiety variables to investigate the extent to which mental health can explain the relationships between ACEs and school outcomes. RESULTS: ACEs were significantly associated with school outcomes. With increased ACEs, autistic children experienced a significant decrease in the odds of school attendance, grade progression and school engagement (p < .05). Furthermore, although depression and anxiety symptoms were significantly associated with school outcomes, they cannot explain away the enduring, strong relationship between ACEs and level of grade progression, engagement, and school success index. CONCLUSION: Our findings suggest ACEs predict school success among autistic children, with mental health conditions appearing to mediate the relationship between ACEs and key factors in school success. Efforts should be made to proactively identify and address the impact of ACEs and associated mental health conditions among autistic students.

BEhavioral Health Stratified Treatment (B.E.S.T.) to optimize transition to adulthood for youth with intellectual and/or developmental disabilities.

Youth with intellectual and/or developmental disabilities (IDD) often struggle with depression and anxiety, which adversely impacts transition to adulthood. Integrated behavioral health care coordination, wherein care coordinators and behavioral health specialists collaborate to provide systematic, cost-effective, patient-centered care, is a promising strategy to improve access to behavioral health services and address factors that impact transition to adulthood, including depression/anxiety symptoms. Current care coordination models (e.g., Title V Maternal and Child Health Bureau [MCHB]) do not include behavioral health services. The CHECK (Coordinated HealthCarE for Complex Kids) mental health model, hereby refined and renamed BEhavioral Health Stratified Treatment (B.E.S.T.), is a behavioral health intervention delivery program designed for integration into care coordination programs. This study aims to determine whether an integrated behavioral health care coordination strategy (i.e., MCHB care coordination plus B.E.S.T.) would be more acceptable and lead to better youth health and transition outcomes, relative to standard care coordination (i.e., MCHB care coordination alone). Results would guide future investment in improving outcomes for youth with IDD. This study is a two-arm randomized clinical trial of 780 transition-aged youth with IDD (13-20 years) to evaluate the comparable efficacy of MCHB Care Coordination alone vs. MCHB Care Coordination plus B.E.S.T. on the following outcomes: 1) decreased symptoms and episodes of depression and anxiety over time; 2) improved health behaviors, adaptive functioning and health related quality of life; 3) increased health care transition (HCT) readiness; and 4) improved engagement and satisfaction with care coordination among stakeholders.