Using a life course health development framework to combat stigma-related health disparities for individuals with intellectual and/or developmental disability (I/DD).

In the U.S., 1 in 6 children has an intellectual and/or developmental disability (I/DD). This population experiences a multitude of negative health outcomes across the life course, relative to the general population. Stigma-the social devaluation of individuals with certain characteristics, identities, or statuses within interpersonal, educational, healthcare, and policy contexts-is a potentially preventable contributor to health disparities. To date, existing approaches for addressing and preventing stigma are limited to discrete and siloed interventions that often fail to address the lifelong, cumulative impacts of the specific types of stigma experienced by the I/DD population. In the current paper, we describe three elements of Life Course Health Development (LCHD)-a novel translational framework that draws on evidence from biology, sociology, epidemiology, and psychology-that healthcare providers can use to prevent stigma-related health disparities and improve outcomes for individuals with I//DDs. We discuss the utility of targeting prevention to sensitive periods; prioritizing interventions for the most damaging types of stigmas; and leveraging supports from multiple service systems and sectors. By incorporating evidence from life course science into efforts to address stigma-related health disparities, providers can more effectively and strategically prevent and combat stigma-related health disparities for the I/DD population in childhood and across the life course.

Engaging Families in Life Course Intervention Research: An Essential Step in Advancing Equity.

Life course intervention research requires a thorough understanding of complex factors that interact to affect health over time. Partnerships with families and communities are critical to understanding these interconnections and identifying effective interventions. Here, family and community engagement are presented, aligned with the 5 phases of the life course intervention research framework: planning, design, implementation, evaluation, and translation. During planning, the researcher considers their own starting position and what they need to learn from families and the community. The design phase produces a plan for family engagement that is layered, iterative, and includes qualitative methods that will inform life course modeling and the research process. The implementation phase includes administrative actions such as creating opportunities for contributions and providing compensation to family and community partners. The evaluation phase requires measurement of the quality of partnerships with families and community and includes making adjustments as indicated to improve these partnerships. This phase also calls for reflection on the impact these partnerships had on the intervention, including if they made a difference for those being served. During translation, the researcher works with all partners, including families and communities, about follow up steps toward project continuation, replication, or completion. The researcher also works collaboratively in determining how the study results are shared. A holistic approach to health over the life course that is designed and executed in partnership with families and their community can generate research findings with broad practical applicability and strong translational potential.

Research on Family Health and Children and Youth With Special Health Care Needs.

Families of children and youth with special health care needs (CYSHCN) can face challenges with regard to health and well-being. Health systems are designed to support CYSHCN but do not often consider the health and well-being of their family. Despite a growing body of literature, substantial gaps remain in our understanding of the impact of caregiving on family health and well-being and mechanisms of supporting families. In order to better understand and address these gaps, a national CYSHCN network developed a national research agenda to prioritize key areas of insufficient understanding of health and well-being for families of CYSHCN. Questions identified by the research agenda include: 1) How can family resiliency and adaptability be measured and improved? 2) How can we better assess family mental health needs and implement appropriate interventions? 3) What is the impact of family health on CYSHCN health outcomes? This paper describes a review of what is currently known regarding health for families of CYSHCN, gaps in the literature focused on the research agenda questions, and recommendations for future research. Based on the research agenda and current state of research for family health of CYSHCN, the authors recommend focusing on resiliency and adaptability as outcomes, using implementation science to address mental health concerns of family members and to further assess the impact of family health on health outcomes of CYSHCN. In addition, research should have a special focus on diverse populations of families and consider these questions in the context of different family structures.

Assessing and Addressing Social Determinants of Health Among Children and Youth With Special Health Care Needs.

Over several decades, a field of research has emerged to examine social and environmental factors that contribute to health inequities among children and youth with special healthcare needs (CYSHCN), with the goal of reducing inequities through identifying and mitigating these social determinants of health (SDH). The Children and Youth with Special Healthcare Needs National Research Network (CYSHCNet) national research agenda development process, described in a companion article, recognized SDH, as experienced by CYSHCN, and the effects on health inequity and child and family outcomes as a high priority area. Important gaps named included which strategies best identify and mitigate the effects of negative SDH and which outcomes are most meaningful to families receiving SDH-focused interventions. In this area, the highest priority questions were the following: 1) How can SDH be routinely addressed in the course of care for CYSHCN? 2) Which interventions most effectively integrate SDH to improve child and family outcomes? Here, we discuss the impact of SDH on CYSHCN, efforts to screen for and intervene upon SDH in this population, and gaps in the current research on SDH specific to CYSHCN. We make several recommendations for research studies that will move the field forward. This work should achieve a greater understanding of patterns and impacts of SDH experienced by CYSHCN. It will also contribute to optimizing identification of SDH and improving interventions to achieve equity in health outcomes identified by patients and families as important to them.

Improving Health Care Transitions for Children and Youth With Special Health Care Needs.

Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care. The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were "What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?" and "How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?". Based upon these priorities, we describe the current state of transition research and recommendations for future investigation. Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.

The Perceptions and Needs of Practitioners Working to Promote Smart Decarceration.

The social work Grand Challenge to Promote Smart Decarceration's aim is to address the high rates of incarceration in the United States. PURPOSE: Yet very little is known about criminal justice practitioners in the U.S. METHOD: In this exploratory study. Practitioners in correctional facilities (n = 38), responded to an online survey asking them about their perceptions of the services they provide and to identify their professional needs working within these settings. RESULTS: Findings include the need for people who are incarcerated to have access to treatment for substance use, behavioral/mental health, and trauma-related issues. In addition, they reported the need for service coordination with agencies based in their home communities. Furthermore, the participants reported that they need more training and support on these topics in order to provide effective services to their clients. DISCUSSION: Implications for practice, research, and policy are discussed, including strategies to address all levels of primary, secondary, and tertiary prevention.

Health care gap affects 20% of United States population: Transition from pediatric to adult health care.

Transition-aged youth and young adults, ages 12 to 26, represent almost 20% of the US population, and an estimated 25%-35% have one or more chronic conditions. The vast majority of youth with and without special health care needs do not receive the necessary and professionally recommended services to transition from pediatric to adult care. Without adequate support during this transition, youth and young adults face an increased risk of adverse outcomes. To accelerate adoption of recommended transition processes in both pediatric and adult systems of care, the authors offer a series of implementation, payment, and research options that are consistent with clinical guidelines from the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians.