228 - Disability Perspectives on Clinical Research Participation Using Positive Health as an Outcome

Publication Number: 3220.228

Melissa M. Murphy, University of Colorado School of Medicine, Aurora, CO, United States; Judy L. Aschner, Hackensack Meridian Health, Nutley, NJ, United States; Paige S. Ryals, Emory University School of Medicine, Atlanta, GA, United States; A. Joselyn Barahona, Emory University School of Medicine, Atlanta, GA, United States; Jennifer Lyman, Cerebral Palsy Foundation, Ponte Vedra Beach, FL, United States; Ashley Harris Whaley, Cerebral Palsy Foundation, New York, NY, United States; Rachel Byrne, Cerebral Palsy Foundation, New York, NY, United States; Nathalie L. Maitre, Emory University and Children's Healthcare of Atlanta, Atlanta, GA, United States

Background: "Positive health" is an important research outcome. When conceptualized as a continuum from presence to "absence of disease", it can exclude those with child-onset impairments associated with disability.

Objective: We sought to capture perceptions of research inclusion in the disability community, queried individual perceptions of positive health among people with lived experience of child-onset disability, and derived a stakeholder-driven action plan for research with positive health as an outcome.

Design/Methods: Part I of this mixed methods study surveyed participants nationally (N=436; Table 1). The survey was distributed via Survey Monkey through a broad-reaching social media campaign conducted between 10-11/2022 by the stakeholder organization. Part II consisted of focus group discussions from 7/2024-12/2024 with adults with a disability (n=4) or caregivers of a child with a disability (n=8) serving on a disability stakeholder advisory board to inform the environmental influences on child health outcomes study (ECHO). Transcripts were analyzed in MAXQDA by 3 coders using an inductive thematic analysis approach and 2 agreement cycles. Themes related to positive health and research participation were returned and refined by stakeholders.

Results: Nationally, only 25% of survey respondents had participated in research NOT targeting disability; 24% had been excluded because of their disability. Research inclusion, especially related to positive health, was rated as extremely important (76-78/100). Qualitatively, SAB-derived themes aligned with principles of autonomy, capacity, beneficence, and justice leading to 4 recommended researcher actions (Figure 1): 1-Reframe a-positive health definition to recognize a-child-onset disability precludes the "absence of disease"; b-impairments amplify reciprocity of caregiver & child/adult wellbeing; c-expectations of resilience can lead to burden undermining positive health; d-biological and environmentally-imposed limitations lower baseline capacity (Figure 2); 2-Learn about disability & impact of ableism by listening to disability community perspectives; 3-Connect people with disabilities to each other through research networks & build research-community partnerships; 4-Empower the community by increasing capacity to participate in & inform research.

Conclusion(s): Individuals with disabilities want to be included in research on positive health. To achieve this, a research action plan with an ethically familiar framework provides a roadmap to study and improve positive health in the disability community.

Characteristics of survey and focus group participants
PAS ECHO Pos Health Table 1.pdf

Roadmap for researcher actions


Reframing positive health