Diverse perspectives on supporting the health and wellness of people with intellectual and developmental disabilities.

Abstract

Background: Persons with intellectual and/or developmental disabilities (IDD) are a growing population, frequently living with complex health conditions and unmet healthcare needs. Traditional clinical practice and research methods and measures may require adaptation to reflect their preferences.

Objective: The perspectives of people with IDD, caregivers/partners, and clinicians were obtained to provide insight into factors contributing to the health and wellness of people with IDD. These, in turn, suggest opportunities for improvements in clinical training and care, and considerations for enhancing research methods and measures.

Methods: An exploratory design, participatory methods, abductive qualitative approach and thematic analysis were employed. Interview data were obtained in twelve focus groups with people with IDD (n = 25), caregivers/partners (n = 21), and clinicians (n = 27). Particular attention was paid to supporting attendees in focus group participation, with adaptations and accommodations made for communication preferences, and graphic illustrations were provided.

Results: Themes emerging across attendee categories that reflect factors contributing to health and wellness for people with IDD include: (1) making healthy choices; (2) participating in everyday activities; (3) benefitting from natural supports (e.g., family, friends, peers); and (4) accessing skilled professional supports (e.g., healthcare provision and payment).

Conclusions: Study findings underscore factors related to supporting health and wellness for people with IDD and suggest the importance of autonomy, accessibility, healthy relationships, self-advocacy, and tailored clinical care. People with IDD can be actively engaged throughout the research enterprise to ensure the relevance, acceptability, and accessibility of research methods and measures; promote inclusiveness; and address health disparities.