Towards inclusive palliative care: participatory development of best practice recommendations for people with intellectual disabilities in Eastern Switzerland

Abstract Background People with intellectual disabilities face significant inequalities in accessing palliative and end-of-life care. Despite growing care needs driven by increased life expectancy and a higher prevalence of chronic and life-limiting conditions, this population remains systematically underserved. In Switzerland, no cross-institutional framework tailored to this group exists. This study aimed to co-develop best practice recommendations for palliative and end-of-life care for people with intellectual disabilities in Eastern Switzerland. Methods The project was guided by the Joanna Briggs Institute (JBI) Model of Evidence-Based Healthcare, supported by an advisory board, and informed by a narrative literature review. Quantitative data were collected via a questionnaire across residential care facilities for people with intellectual disabilities in Eastern Switzerland. Qualitative data were gathered through interviews and workshops with people with intellectual disabilities, interviews with family caregivers, and focus groups with professionals. Data were analysed descriptively and using the Framework Method; mixed methods integration followed a convergent design, using joint display tables. Recommendations were piloted in one residential care facility using the JBI Getting Research into Practice tool. Results Based on integrated findings and advisory board input, 21 best practice recommendations were developed across four domains. In education, recommendations address palliative and end-of-life care integration into undergraduate curricula; continuing education for professionals, leaders, and family caregivers; access to needs-assessment tools and evidence-based resources; and inclusive learning formats for people with intellectual disabilities. In communication, recommendations focus on fostering staff preparedness, enabling open conversations about death and dying, and ensuring systematic documentation of end-of-life wishes. In collaboration, recommendations call for knowledge of regional palliative care networks, clear referral pathways, documented interprofessional exchange formats, and active involvement of family caregivers and legal representatives. In the system domain, recommendations address network integration, designated palliative care leads, institutional palliative care culture, and policy recognition. Conclusions The 21 best practice recommendations, grounded in evidence and co-developed with people with intellectual disabilities, family caregivers, and professionals, provide a practical framework for improving palliative and end-of-life care. Future research should prioritise examining how such recommendations can be effectively implemented across diverse care settings, while retaining the participatory approach that proved central to this project.