Background: Research has illuminated the challenges of recruiting and retaining adolescents and young adults (AYA) in research studies due to environmental, community, and personal factors. The Community Health Workers and Mobile Health for Emerging Adults Transitioning Sickle Cell Disease Care (COMETS) Study is a RCT comparing the effectiveness of two self-management support interventions, Community Health Workers (CHW) and Mobile Health (mHealth), versus enhanced usual care to improve health-related quality of life for transitioning AYA with sickle cell disease (SCD). The aim of this paper is to describe recruitment and retention strategies used in the COMETS study. Methods: Recruitment and retention strategies that were identified prioritized the complex relationships between AYA with SCD and their environments. AYA (17 and older) were approached for study participation across five SCD centers in NY, PA, OH, and CT. Study team members approached patients to complete surveys at 6-, 12-, and 18- months after study enrollment. Results: Of the 496 young adults approached, 405 were enrolled and 375 were randomized (median age=18 years, range=17–28). Enrolled subjects evenly identified as male (49%) and female (50%). Most participants identified as Black or African American (95%) and 8.2% of participants identified as Hispanic/Latino. Retention rates were: 82% at 6 months, 82% at 12 months and 77% at 18 months. Conclusions: Implementing recruitment and retention strategies that take into consideration participant environmental, community, and personal factors are imperative for success. Study teams should be prepared for ongoing refinement of strategies based on participant and collaborator feedback.

OBJECTIVE:To examine feasibility, acceptability, satisfaction, and preliminary efficacy of Diabetes Journey (DJ), a randomized controlled clinical trial for 12- to 17-year-old adolescents with type 1 diabetes (T1D). STUDY DESIGN:Adolescents (n = 162; Mage = 14.8 ± 1.6 years; 56.4% female) who exceeded the clinical cut-point on the Barriers to Diabetes Adherence (BDA) questionnaire were randomized to DJ (amusement park-themed web modules) or enhanced standard of care (ESC; T1D education toolkit). Data were collected across 9 months, including baseline, posttreatment, follow-up 1 (3 months posttreatment), and follow-up 2 (6 months posttreatment). Primary outcomes were acceptability, feasibility, satisfaction, and BDA Stress/Burnout and Time Pressure/Planning scores at follow-up 1. Secondary outcomes were glycosylated hemoglobin A1c and quality of life. RESULTS:The group × time interaction was significant for the BDA Stress/Burnout subscale. Compared with ESC, the DJ group demonstrated a modest but statistically significant reduction in Stress/Burnout (b = -0.36, P < .05, 95% CI -0.72 to -0.01) and improvements in T1D quality of life (b = 7.09, P = .03, 95% CI 0.59-13.59). No significant differences occurred between groups for time pressure/planning. Adolescents and caregivers in DJ reported greater satisfaction than those in ESC. CONCLUSIONS:Our preliminary findings suggest that DJ had high acceptability, feasibility, and satisfaction. Adolescents randomized to DJ showed signals of reduced stress and burnout and improved quality of life at later follow-up, although these findings should be interpreted cautiously given attrition and the optional nature of the final follow-up assessment. TRIAL REGISTRATION:www. CLINICALTRIALS:gov NCT04404556.

Objectives:Consensus Measures for Phenotypes and eXposures (PhenX) Toolkit (https://www.phenxtoolkit.org/) is a web-based catalog of recommended measurement protocols and associated bioinformatics tools to assist with study design and facilitate cross-study data integration and analyses. Before February 2023 (v.44), protocols specific to sickle cell disease did not address key psychosocial factors or social determinants of health that impact care and outcomes. This paper describes the protocol selection process and final recommendations to address this limitation. Methods:To identify protocols for the new collection, the PhenX Sickle Cell Disease Research and Scientific Panel provided a list of scope elements for consideration and assembled a panel with relevant expertise in psychology, behavioral science, hematology, and nursing to form a Psychosocial and Social Determinants of Health Working Group. A consensus process prioritized and identified the scope elements and protocols. The 19 scope elements and related protocols initially selected were shared with the scientific community for public comment, informing final selections. Results:The final 15 recommended protocols assess transition readiness, self-management, impact of early aging, stigma, trust in medical care and research, resilience, spirituality, and stress responses. Another 8 protocols were selected as supplemental information. Sickle cell-relevant social determinants of health protocols were also cross-listed from other PhenX Toolkit Collections. Conclusion:Recommended protocols enhance the existing Sickle Cell Disease Research Collections and the individual and structural Social Determinants of Health Collections in the PhenX Toolkit. Furthermore, the protocols will promote using validated measurement tools to investigate psychosocial factors and social determinants in sickle cell disease.

OBJECTIVE:The aim of this scoping review was to identify and describe the community-engaged research (CEnR) methods used in the development and evaluation of psychological interventions for pediatric sickle cell disease (SCD). METHODS:We conducted a systematic search of three databases in April 2024 (PubMed, Scopus, and PsycINFO). The review was registered with Open Science Framework (DOI: 10.17605/OSF.IO/956AV). All titles, abstracts, and full texts for papers that appeared to meet criteria were independently reviewed by two members of the research team. Inclusion criteria were pediatric or young adult age and use of CEnR for a psychological SCD intervention. Data were extracted from articles meeting these criteria. RESULTS:The search yielded 235 original articles, of which eight met the inclusion criteria. These articles showed that the involvement levels of community collaborators (patients, families, and community-based organizations) varied across research phases. Notable gaps in the literature were: (1) few studies reported utilizing CEnR methods, (2) variability in language/terms used to describe CEnR methods, (3) limited demographic data about community collaborators, and (4) a lack of description of CEnR frameworks guiding intervention development and evaluation. CONCLUSIONS:This scoping review found few studies describing the use of CEnR methods in a way that would facilitate reproducibility. Recommendations include using MeSH CEnR keywords, identifying CEnR methods and frameworks, and including specific information about community when possible (e.g., demographic information, meeting frequency, etc.).

Most adolescents with type 1 diabetes (T1D) encounter barriers to achieving optimal glycemia, including effective planning and monitoring their T1D and problem-solving, and following through with T1D treatment decisions. Thus, the overall aim of Diabetes Journey, a randomized controlled clinical trial, was to assess the feasibility, acceptability, and preliminary efficacy of a novel, amusement park-themed, web-based mobile health (mHealth) intervention tailored for adolescents who experienced barriers to T1D self-management. Secondary aims included examining post-intervention changes in T1D health-related quality of life, T1D self-management behaviors, and hemoglobin A1c (HbA1c). This article describes the study rationale, recruitment, design, and baseline characteristics of the adolescents (aged 12-17 years) who were randomized to one of two groups: Diabetes Journey or Enhanced Standard of Care. Diabetes Journey focused on reducing challenges related to stress, burnout, time pressure, and planning through the delivery of 5-8 intervention sessions using a problem-solving framework. Enhanced Standard of Care participants attended 4 education sessions focused on similar topics through the T1D Toolkit© website (educational content and brief videos about T1D). Adolescents (N = 195) were recruited with n = 162 randomized (Mage = 14.8 ± 1.6 years; 50 % female, 88 % White; HbA1c% = 8.2 ± 1.8; 86 % on insulin pumps). Diabetes Journey was impacted by COVID-19 and modifications to the study design were warranted. Future directions include examining the impact of Diabetes Journey on primary and secondary outcomes, while accounting for the impact of COVID-19.

IntroductionMental and behavioral health (MBH) access varies in pediatric specialty medicine and rural healthcare. This study aimed to characterize healthcare professionals' perceptions and experience with MBH services and readiness for change.MethodsThirty rural healthcare professionals completed validated questionnaires and semistructured interviews designed to meet study objectives. A convergent mixed methods design with a comparison method of interpretation was followed.ResultsThematic analysis yielded three major themes highlighting the prevalence of MBH concerns in practice, global perceptions of MBH care, and related barriers/facilitators to implementation. Current levels of MBH integration varied though overall readiness for change was high.DiscussionFindings highlight stakeholder perceptions about the role of MBH in pediatric specialty medicine. Key considerations for those who utilize or plan to adopt integrated MBH care at various levels are discussed, including readiness to change and other structural (e.g., organizational) or individual factors serving as facilitators and barriers to implementation.

Objectives:Infancy is a critical period for preventing obesity and health disparities. This study reports on the acceptability of a responsive parenting obesity prevention intervention (THRIVE) delivered via integrated behavioral health in a pediatric primary care setting. Intervention participants were invited to participate in a focus group on the acceptability of THRIVE and suggestions for refinement with particular attention to cultural responsiveness and diversity, equity, inclusion, and accessibility (DEIA). Methods:Eleven of 32 (34.4%) mothers participated in a 45-60 minute focus group (three groups, 3-5 participants each). Sessions utilized a semi-structured interview guide, were transcribed verbatim, and analyzed according to a thematic analytic approach. Results:Four themes emerged: (1) Lived Experience (e.g., lived experience as a mother, navigating systemic and healthcare-related barriers, and context that shaped personal experiences with THRIVE); (2) Therapeutic Processes and Cultural Responsiveness (e.g., an appreciation of families' strengths and values by the THRIVE interventionist that facilitated engagement with THRIVE); (3) Tailored Strategy Implementation (e.g., implementation of THRIVE skills and strategies by families and how strategies were adapted or tailored to meet families' needs); (4) Future Improvements to THRIVE (e.g., proposed strategies for increased attention to DEIA and reducing participant burden). Conclusions:Conducting qualitative research prior to Phase 2-3 trials is vital to ensuring the interventions developed, implemented, and tested are not only empirically-based, but also culturally-responsive, attentive to DEIA, acceptable and relevant. Mothers provided valuable insights surrounding participation in THRIVE, highlighting important DEIA elements of THRIVE and suggested ways to decrease burden and increase access.

Objective Culture and diversity-related training is critical to the development of competent pediatric psychologists. Evaluation of training efforts have been conducted at the program level, yet evaluation of trainee experiences in culture and diversity-related training remains unassessed. This trainee-led study was the first formal assessment of pediatric psychology trainee experiences of culture and diversity-related training and the impact of training on their own cultural humility.Methods Study overview and a survey link was distributed across 2 listservs associated with the American Psychological Association (Division 53, Division 54) and sent directly to directors of graduate, internship, and fellowship training programs with a request to share with trainees. Surveys assessing integration of cultural training and trainee cultural humility were completed. Trainees also provided qualitative feedback regarding their multicultural training and development.Results Pediatric psychology trainees (N = 90) reported inconsistent integration of culture and diversity topics into their training. Of the 34 training areas assessed, 10 were perceived as thoroughly integrated into formal training by at least half of the respondents. Trainees often sought independent cultural training outside of their programs, and no relationship was detected between perceived integration of cultural training and trainee cultural competence.Discussion Results indicate room for improvement regarding integration of cultural training and a need to better understand driving forces behind trainees independently seeking training outside of their formal training programs. Moreover, understanding the aspects of training that are most contributory to trainee development is needed given that no relationship between training and development emerged in the current study.

Background: Community health workers (CHWs) are vital links between communities and health systems, with CHW models facilitating positive health and life outcomes. However, little is known about CHWs’ experiences serving in these roles or their potential to support the transition to adulthood for adolescents and young adults (AYA). Methods: Semi-structured interviews were conducted with CHWs and their supervisors from five recruitment sites affiliated with Community Health Worker and Mobile Health for Emerging Adults Transitioning Sickle Cell Disease Care (COMETS) Trial. COMETS compared the effectiveness of a CHW intervention, mobile health application, or enhanced usual care on the health-related quality of life of AYA with SCD transitioning from pediatric to adult care. To understand CHW and CHW supervisor experiences during the COMETS trial, interviews were analyzed using an integrated inductive and deductive thematic analytic approach. Results: Three key themes emerged as interviewees described the unique aspects of the CHW role: (1) the supports for transition to adulthood that CHWs provided to patients, (2) the experiences of establishing trusting relationships with patients, and (3) the impact of the role on CHWs themselves. All interviewees reported unique contributions made by CHWs in supporting patients’ transition readiness, and CHWs expressed that participating in COMETS impacted them personally and professionally. Conclusion: This study highlights that the CHW role is unique both in how CHWs connect with AYA and how it impacts CHWs. Health systems should explore paths for sustainable funding and workforce development for CHWs and invest in infrastructure for CHW transition programs.

Psychosocial concerns are common among youth who sustained a burn injury. Detecting psychosocial distress early is essential to ensure appropriate treatment and referrals. Thus far, research has focused largely on the long-term outcomes of pediatric burn survivors. The current quality improvement initiative details the implementation and outcomes of brief, pragmatic screening to assess psychosocial concerns among pediatric burn survivors in an outpatient setting. A primary caregiver completed an age-appropriate psychosocial screener for youth aged 4-10 years (n = 69), while patients aged 11-17 years (n = 72) completed a self-report screener. Total scores were used to categorize patients as acute risk (i.e., emotional concerns requiring immediate attention), moderate risk (i.e., elevated symptoms, but no immediate safety concerns), or low risk (i.e., endorsing few to no symptoms). Patients with acute risk were evaluated by medical staff to determine the need for immediate psychiatric intervention or social services referrals. Patients with moderate risk met with the on-site psychology team during their clinic visit or were contacted by telephone within 1 week. Patients in the low-risk category warranted no additional follow-up post-screening. Most patients scored in the low-risk category (n = 120; 85%), while 11% (n = 16) and 4% (n = 5) endorsed symptoms consistent with moderate and acute risk, respectively. Results demonstrate the utility of implementing pediatric psychosocial screening in an outpatient burn clinic, the importance of detecting psychosocial concerns in this context, and usage of referrals to address concerns. Findings also shed light on key caveats of psychosocial screening, barriers to accessing psychosocial support, and the potential benefits of embedded psychological support during medical visits.

Purpose Examining the influence of policy change and socio-political factors is paramount for contextualizing and addressing sexual violence. The purpose of this paper is to provide findings from a secondary qualitative analysis of the impacts of national and local high-profile events on the dialogue and actions surrounding violence prevention and response on college campuses. Methods Data from mcBEE, a Centers for Disease Control and Prevention-funded project exploring the adoption and implementation of violence prevention programming on multiple college campuses in the United States were used for this analysis. Data include responses from 60-min telephone interviews with key informants (i.e., campus personnel in administrative roles or connected to violence prevention programming efforts) between 2017 and 2019. Results Interviews (n = 68) revealed that high-profile events (i.e., Title IX legislation, news coverage of sexual assault cases, and the #MeToo and It's On Us movements) increased dialogue about violence prevention and response on some campuses, while others experienced activism and advocacy surrounding sexual assault, including greater accountability and response from campus leadership. Some participants connected national political discourse (i.e., the 2016 presidential election, Brett Kavanaugh nomination to the U.S. Supreme Court) to increases in violence perpetration and decreased reporting and help-seeking behaviors after sexual assault. Conclusions Sociopolitical events and shifts in national dialogue surrounding violence affect perceptions and behaviors among students, faculty, staff, and overall college campus communities. Identifying potential impacts of national events can inform future prevention and response efforts and mobilize campus communities toward meaningful change.

Despite having the same underlying genetic etiology, individuals with the same syndromic form of intellectual developmental disability (IDD) show a large degree of interindividual differences in cognition and IQ. Research indicates that up to 80% of the variation in IQ scores among individuals with syndromic IDDs is attributable to nongenetic effects, including social-environmental factors. In this narrative review, we summarize evidence of the influence that factors related to economic stability (focused on due to its prevalence in existing literature) have on IQ in individuals with syndromic IDDs. We also highlight the pathways through which economic stability is hypothesized to impact cognitive development and drive individual differences in IQ among individuals with syndromic IDDs. We also identify broader social-environmental factors (e.g., social determinants of health) that warrant consideration in future research, but that have not yet been explored in syndromic IDDs. We conclude by making recommendations to address the urgent need for further research into other salient factors associated with heterogeneity in IQ. These recommendations ultimately may shape individual- and community-level interventions and may inform systems-level public policy efforts to promote the cognitive development of and improve the lived experiences of individuals with syndromic IDDs.

Psychologists have an ethical responsibility to advance health equity and can play a significant role in improving health care experiences for families racialized as Black, including those with sickle cell disease (SCD), a group of genetic blood disorders primarily affecting communities of color. Parents of children with SCD report experiences of stigma and discrimination due to racism in the health care system. The current commentary describes the application of antiracism and participatory strategies to the research design, implementation, and dissemination of a behavioral medicine clinical trial (Engage-HU; NCT03442114) of shared decision-making (SDM) for pediatric patients with SCD, including (a) the development of a research question to promote justice for racialized groups; (b) a focus on "redressing imbalances" through SDM and a multidisciplinary, inclusive research team led by a Black psychologist; (c) community participatory approaches through the integration of stakeholder feedback across the study; and (d) centering context by attending to structural realities in response to the COVID-19 and racism pandemics. With attention to the fact that most primary caregivers of children with SCD are Black women, an intersectionality lens was applied. Implications and considerations for psychologists working to advance health equity in medical settings are also discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Objective: A family-tailored education and problem-solving intervention, Supporting Treatment Adherence Regimens (STAR), was developed to address the adherence challenges common in youth with epilepsy and their families. Randomized clinical trial (RCT) results indicated a 21% adherence improvement in the STAR group compared with an education-only (EO) group 12-months post-intervention. The current study examined group differences (STAR vs. EO) in epilepsy-specific knowledge, barriers to medication adherence, problem-solving skills, caregiver emotional distress, and family functioning over time and whether these factors mediated group differences in adherence at 12-months post-intervention. Methods: Two-hundred children (ages 2-12) with epilepsy and their caregivers were included as RCT participants. Children with new-onset epilepsy and adherence < 95% were randomized to receive either the STAR (n = 27) or EO (n = 29) intervention. Caregivers completed questionnaires assessing outcomes of interest at baseline, midpoint of the intervention, post-intervention, and 3-, 6-, and 12-month followups. Regression-based analyses of covariance and longitudinal mixed effect linear models were conducted. Results: Results generally revealed no significant group differences across outcomes of interest at postintervention or over time. However, one significant model did emerge for social problem-solving skills (b = -1.74, p = 0.04), such that these scores were initially higher in the STAR group compared to the EO group, then decreased slightly in the STAR group over time while remaining stable in the EO group. None of these factors mediated group differences in adherence at 12-months post-intervention. Conclusion: Future research should examine other potential mechanisms of treatment change after adherence interventions, such as STAR. Nonsignificant findings can inform the development of future study designs and intervention efforts.