Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

ABSTRACT:

Background

Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries.

Research design and objective

An interpretive description study was conducted to explore the perspectives of international r

SUBMITTER: Vellani S 

PROVIDER: S-EPMC10748824 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature