People with cognitive disabilities (including developmental disabilities and dementia) face significant inequities in accessing palliative care information and services. Accessible communication plays a critical role in enabling meaningful participation in care, yet few national palliative care resources are evaluated with direct input from people with lived experience. A qualitative descriptive study engaged eight individuals with lived experience of cognitive disabilities as cognitive accessibility experts. These individuals reviewed three palliative care resources (in English or French) and participated in semi structured virtual interviews. Data were analyzed to identify accessibility challenges, strengths of resources, and actionable recommendations. The analysis revealed challenges such as dense vocabulary, abstract phrasing, and inconsistent sequencing. At the same time, cognitive accessibility experts by experience identified strengths, including plain-language sections, clear segmentation, simple visual layouts, and useful questions to ask healthcare providers. In particular, their comments praised the organization, straightforwardness, and readability. Based on these insights, cognitive accessibility experts by experience recommended simplifying language, improving clarity and structure, adding concrete examples, and incorporating more direct communication prompts. Health Canada has already begun revising the resources in response to these recommendations, demonstrating real-world impact. Cognitive accessibility depends on how the information is designed, not on the person reading it. Involving people with cognitive disabilities as research partners strengthens both the ethical foundation and practical utility of palliative care communication. Co-designed, cognitively accessible resources are essential to support autonomy, shared decision-making, and equitable palliative care access for all.
Er-raji et al. (Sat,) studied this question.