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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.

Shirin VellaniMarie-Lee YousVanessa Maradiaga RivasStephanie LuccheseJulia KruizingaTamara SussmanJulia AbelsonNoori Akhtar-DaneshGina BravoKevin BrazilRebecca GanannSharon Kaasalainen
Published in: Health expectations : an international journal of public participation in health care and health policy (2024)
PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.
Keyphrases
  • mental health
  • cognitive impairment
  • healthcare
  • emergency department
  • palliative care
  • quality improvement