An Updated Equitable Model of Readiness for Transition to Adult Care: Content Validation in Young People With Sickle Cell Disease.

Importance: Despite elevated health risks during young adulthood, many adolescents and young adults with serious health care needs face barriers during the transfer to an adult specialty practitioner, and health disparities may occur during the transition. Objective: To validate the content of an updated Social-Ecological Model of Adolescent and Young Adult Readiness for Transition to Promote Health Equity (SMART-E) in a group of adolescents and young adults with sickle cell disease (SCD) and their supports. Design, Setting, and Participants: Health equity framework components were reviewed. Systems of power (eg, institutional and practitioner bias) and environments or networks (eg, peer or school support) were added as SMART-E preexisting factors, and health literacy was included within readiness factors. Adolescents and young adults aged 16 to 29 years with SCD, caregivers, and practitioners participated in this convergent, mixed-methods study within Children's Hospital of Philadelphia between January and August 2022. Main Outcomes and Measures: Content validity was assessed through nominations of top 3 most important transition barriers prior to interviews and focus groups, ratings on importance of SMART-E factors (0-4 scale; ratings >2 support validity) after interviews and focus groups, nominations of 3 most important factors for transition and for health equity, and qualitative content analysis of interview transcripts. Results: The study enrolled 10 pediatric adolescents and young adults (mean [SD] age, 18.6 [2.9] years; 4 female and 6 male), 10 transferred adolescents and young adults (mean [SD] age, 22.9 [2.1] years; 8 female and 2 male), 9 caregivers (mean [SD] age, 49.8 [8.7] years; 5 female and 4 male), and 9 practitioners (mean [SD] age, 45.6 [10.5] years; 8 female and 1 male). Quantitative ratings supported the content validity of SMART-E and met established criteria for validity. Systems of power was the most endorsed transition barrier (14 of 38 participants) reported prior to interviews and focus groups. After the interview, participants endorsed all SMART-E factors as important for transition, with new factors systems of power and environments and networks rated at a mean (SD) 2.8 (1.23) and 3.1 (0.90), respectively, on a 0 to 4 scale of importance. The most important factors for transition and equity varied by participant group, with all factors being endorsed, supporting the comprehensiveness of SMART-E. Qualitative data corroborated quantitative findings, further supporting validity, and minor modifications were made to definitions. Conclusions and Relevance: SMART-E obtained initial content validation with inclusion of health equity factors for adolescents and young adults with SCD, caregivers, and practitioners. The model should be evaluated in other populations of adolescents and young adults with chronic disease.

Partnering with Families and Communities to Improve Child Health and Health Equity.

Pediatricians and other pediatric health providers collaborate with families and communities, including schools, health departments, and other partners to advance pediatric health challenges and health equity. This article will discuss best practices and guiding principles to support engagement and effective partnership with families and communities. Models for engaging families and communities while promoting health equity will also be discussed. Case studies and examples will be shared, as well as how they may be applied by pediatric health providers to promote child health.

Diversity, Equity, and Inclusion within Pediatric Adherence Science.

Given the long-standing history of systemic racism in psychological science, diversity, equity, and inclusion (DEI) efforts are increasingly vital to the advancement and improvement of the field. This commentary extends the seminal work of the article Upending Racism in Psychological Science: Strategies to Change How Our Science is Conducted, Reported, Reviewed, and Disseminated (Buchanan et al., Am Psychol, https://doi.org/10.31234/osf.io/6nk4x , 2020) by providing tangible applications and recommendations to improve DEI integration into pediatric adherence science. Real-world adherence examples are discussed regarding the challenges faced in systematically integrating DEI principles, potential solutions to overcoming barriers, and the implications of these efforts on scientific advancement in an effort to address and dismantle research practices that perpetuate inequity and White supremacy. Specifically, we provide discourse and practical guidance related to the conduct, reporting, reviewing, and dissemination of pediatric adherence science to promote dialog and produce actionable change toward the promotion of health equity and social justice.

Commentary: Reflections on the COVID-19 Pandemic and Health Disparities in Pediatric Psychology.

The COVID-19 (2019 novel coronavirus) pandemic has had a significant economic, social, emotional, and public health impact in the United States. A disturbing trend is that Black, Indigenous, and/or People of Color (BIPOC) are disproportionately contracting coronavirus, as well as dying from COVID-19. Objective/Methods The pandemic has the potential to entrench and magnify existing health disparities and families marginalized across multiple demographic intersections such as race/ethnicity, class, immigration status, are especially vulnerable. These inequities have been further underscored by the recent murders of Black Americans by police and a resulting spotlight on racial injustice in the United States. Results Efforts to lessen the spread of the virus, have resulted in changes in pediatric primary and subspecialty service delivery which may affect access for BIPOC communities. BIPOC trainees including those with debt or caregiving responsibilities may be faced with new barriers resulting in delays in completion of their training. Further, clinical, community-based, and translational research has been disrupted by heightened safety precautions and social distancing which may affect BIPOC representation in research downstream. Conclusion In our roles as clinicians, supervisors, trainees, and researchers in primary and subspecialty care as well as in academia, pediatric psychologists have an ethical responsibility to address the disproportionate burden of this pandemic on vulnerable communities and to allocate our time and resources to ensuring health equity now and in the aftermath of COVID-19.

Eating dinner away from home: Perspectives of middle-to high-income parents.

This study sought to understand barriers and facilitators for preparing and eating dinner at home in families who report eating dinner away from home ≥3 times per week. Cross-sectional, mixed methods (focus groups, questionnaires) study. Twenty-seven parents with a child 3-10 years-old who reported eating dinner away from home ≥3 times per week from a pediatric medical center in the Midwest participated. The key concepts analytic framework guided focus group analysis. Descriptive statistics were used to characterize parent demographics, anthropometrics, attitudes and confidence toward cooking, perceptions of dinner costs and portions, and parent and child dinners. Parents reported confidence in cooking a home prepared meal, but that eating away from home was reinforcing because it provided quality family time and diminished barriers such as picky eating and perceived costs. Home cooking was also hindered by early school lunch and after-school sports as children were not hungry or home at the typical dinner hour and parents did not want to cook after 8pm. Parents estimated preparing and eating a meal at home took significantly more time than driving and eating out (80.7 min vs. 30.3 min, p < 0.001). Parents significantly (F (3, 104) = 8.80, p < 0.001) overestimated the cost of home-prepared meals compared to take-out and frozen meals. Portion size was also overestimated for a protein serving. Findings are limited to predominantly married, female parents whom are highly educated and working. To reduce eating out, interventions should address family factors (e.g., time management, quality time) and child behavior (e.g., picky eating). Innovative interventions that include experiential cooking opportunities that incorporate time management, address picky eating and enthusiasm for cooking with education on decreasing costs may be particularly beneficial for middle-to high-income families.

Psychometric Properties of the Psychosocial Assessment Tool-General in Adolescents and Young Adults With Sickle Cell Disease.

OBJECTIVES: Adolescents and young adults (AYAs) with sickle cell disease (SCD) experience psychosocial factors that increase their risk for poor disease management and health outcomes. Routine assessment of psychosocial factors that perpetuate health disparities is recommended. The Psychosocial Assessment Tool 2.0_General (PAT2.0_GEN) AYA is a psychosocial screener with potential clinical utility in AYAs with SCD. This article is a preliminary examination of the internal consistency and predictive validity of this measure in a sample of 45 AYAs with SCD. METHODS: Participants completed the PAT2.0_GEN AYA, Pediatric Quality of Life Inventory, and a demographics form; psychosocial referral data were also collected. RESULTS: Internal consistency for the PAT2.0_GEN AYA was acceptable except for the Family Beliefs (0.67) and Structure and Resources subscales (0.37). PAT2.0_GEN AYA scores were associated with an increased likelihood of referral for intervention within 4 months. CONCLUSIONS: The PAT2.0_GEN AYA holds promise as a screener to identify psychosocial risk factors that may compromise health outcomes in AYAs with SCD.

A biopsychosocial model for the management of patients with sickle-cell disease transitioning to adult medical care.

The lifespan of patients with sickle-cell disease (SCD) continues to increase, and most affected individuals in high-resource countries now live into adulthood. This necessitates a successful transition from pediatric to adult health care. Care for transitioning patients with SCD often falls to primary care providers who may not be fully aware of the many challenges and issues faced by patients and the current management strategies for SCD. In this review, we aim to close the knowledge gap between primary care providers and specialists who treat transitioning patients with SCD. We describe the challenges and issues encountered by these patients, and we propose a biopsychosocial multidisciplinary approach to the management of the identified issues. Examples of this approach, such as transition-focused integrated care models and quality improvement collaboratives, with the potential to improve health outcomes in adulthood are also described.

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.

The community leaders institute: an innovative program to train community leaders in health research.

An emerging best practice of addressing health and improving health disparities in communities is ensuring that academic health centers (AHCs) are engaged with area schools, primary care practices, and community advocates as equal partners in research, services, and programs. The literature documents the importance of ensuring that academic-community collaboration is based on equity, trust, and respect and that there is capacity (time and resources) and a shared culture (language, skills, and applied knowledge) for accomplishing mutual goals in academic-community research partnerships. It is also essential that an academic-community collaboration result in tangible and measurable goals and outcomes for both the target community and the AHC. Currently, the models for implementing best practices in community health partnerships, especially training programs, are limited.This article summarizes the goals and outcomes for the Community Leaders Institute (CLI), a six-week innovative leadership development training program designed to enhance academic-community research, integrate the interests of community leaders and AHC researchers, and build research capacity and competencies within the community. On the basis of two years of outcome data, the CLI is achieving its intended goals of engaging faculty as trainer-scholars while promoting academic-community partnerships that align with community and AHC priorities. The training and collaborative research paradigm used by the CLI has served to accelerate AHC-community engagement and integration efforts, as CLI graduates are now serving on AHC steering, bioethics, and other committees.

Parent perspectives on pain management, coping, and family functioning in pediatric sickle cell disease.

Pediatric sickle cell disease is a chronic illness for which recurrent pain is a ubiquitous experience. This study used quantitative and qualitative methods to examine relationships between patient and family coping and health care utilization in children with sickle cell disease and to assess parents' recommendations for ensuring patient and family-centered care. Participants were 53 parents of children aged 7 to 13 with sickle cell disease across three large urban children's hospitals. Data showed that positive patient coping was related to positive family functioning and lower health utilization. In addition, parents report the need for comprehensive health care approaches that meet the physical and psychologic needs of patients and families.