Background: A Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia.
Methods: This study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis.
Results: Three themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change.
Conclusions: Family carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors' engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports.
Keywords: Dementia; End-of-life care; Long-term care; Palliative care; Patient oriented research.
Patient and public involvement (PPI) in research has been growing worldwide and ensures that research conducted is relevant to the needs of patients. Within the Family Carer Decisions Support study, we created a Strategic Guiding Council (SGC) to engage family carers of persons with advanced dementia as advisors to improve access to a palliative approach to care. The SGC includes family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Italy and the Czech Republic. The goal of the strategy was to engage with family advisors in research activities to improve access to a palliative approach and quality of care provided to people with dementia receiving end-of-life care. Including patients and family in research is extremely important, therefore our aim in this study was to explore family advisors’ motivations to engaging in the SGC. Family advisors reported encountering challenges with navigating the health system with end-of-life care and they chose to participate in the SGC to support other carers who are experiencing a similar situation. Being part of the SGC also provided the family advisors with an avenue to advocate on the importance of improving access to end-of-lifesupports and the opportunity to learn from other advisors, health professionals and researchers.
© 2024. The Author(s).