End-of-life Cancer Care Among Adults with Intellectual and Developmental Disabilities

Vollständiger Abstract

Worum geht es in dieser Arbeit?

Introduction: Intellectual or developmental disabilities (IDD) refer to conditions that affect intellectual, adaptive, and social skills that arise during the developmental period. Previous research indicates that adults with IDD are more likely to be diagnosed with advanced cancer and have lower rates of survival compared to non-disabled people. However, there is limited research examining end-of-life (EOL) cancer care among this patient population, and even less research documenting the lived experience of adults with IDD with cancer. This study considers EOL cancer care among adults with IDD as well as those involved in their circle of care, with an ultimate aim of identifying their barriers to equitable cancer care. This presentation highlights how our research team is intentionally building and engaging an advisory board of adults with IDD and family members to meaningfully guide the project. Methods: Our 4-year mixed methods study examines EOL cancer care among this patient group using quantitative and qualitative approaches. We have developed advisory boards comprising 7 self-advocates, 4 family advocates, and 16 co-investigators to inform all steps of the study. Currently, we are in our qualitative phase of the project. Our advisory boards meet monthly to review and refine study materials, providing feedback on language, formatting, and procedural rules to enhance accessibility and inclusivity. In addition, structured dialogue sessions allow co-investigators, including clinicians and researchers, to engage directly with advocates to discuss equitable cancer care and EOL decision-making. Conclusions: The advisory board deepens understanding of flexibility, inclusivity, and fostering a respectful space for discussion. They also reflect how lived experiences bring forward perspectives that researchers alone cannot capture through traditional research approaches. Importantly, engaging adults with IDD and their family members as partners, and not just participants, should be the norm to shift towards a more inclusive, patient-centred research practice.