Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement.
Laura BarrettJulia HackettJohanna TaylorAndrew PapworthGabriella WalkerLorna Katherine FraserPublished in: Palliative medicine (2024)
To undertake meaningful PPI in paediatric palliative care research, adequate time and resources are required. Roles, processes and expectations must be explicitly agreed. Establishing relationships ensures trust and enables authenticity and vulnerability. In addition to improving research, PPI has personal benefits for researchers and parents. The evaluation led to the development of a 'route map' for establishing an impactful PPI group for paediatric palliative care research.