Attitudes on Palliative Care for Adults with Developmental Disabilities.

Area of Science:

• Palliative Care
• Intellectual and Developmental Disabilities
• Healthcare Provider Attitudes

Background:

• Intellectual and Developmental Disabilities (IDD) affect individuals before age 18, with many now living into adulthood in community settings.
• Deinstitutionalization has shifted care for adults with IDD to community environments, highlighting a need to understand their end-of-life care requirements.
• Existing literature lacks examination of Canadian healthcare providers' attitudes towards end-of-life care for adults with IDD.

Purpose of the Study:

• To explore the attitudes of Canadian Pediatric Palliative Care (PPC) practitioners regarding the care of adults with IDD.
• To identify specific components of care that require improvement for this patient population.
• To understand the challenges and barriers faced by PPC practitioners in this context.

Main Methods:

• Thematic and content analysis of an anonymized survey distributed to Canadian PPC practitioners.
• Survey included open-ended and Likert-scale questions, with data analyzed using NVivo11 software.
• Snowball sampling ensured participation from all Canadian PPC centers, with 70% of practitioners responding.

Main Results:

• Major themes identified include communication and decision-making difficulties, a lack of appropriate resources and services, and knowledge/skill gaps among adult palliative care and generalist providers.
• Respondents noted gaps in understanding complex medical conditions, patient trajectories, and management strategies for adults with IDD.
• While PPC practitioners are willing to consult, the frequency of such consults varies significantly across Canada.

Conclusions:

• Canadian PPC practitioners perceive substantial issues and barriers affecting the optimal palliative care for adults with IDD.
• Addressing communication, resource allocation, and specialized training is crucial for improving end-of-life care for adults with IDD.
• Further research and interdisciplinary collaboration are needed to enhance care delivery for this vulnerable population.