Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement.

ABSTRACT:

Background

Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are important.

Aim

To evaluate a paediatric palliative care research centre's PPI activity to determine what went well, or less well; and how future activities can be improved.

Design

Two stage evaluation: first a review of PPI study logs; second a qualitative exploration using a survey, structured interviews and a focus group. Data were analysed thematically.

Settings/participants

Parents of children with life-limiting conditions, bereaved parents and researchers, all engaged in PPI activity within a paediatric palliativ

SUBMITTER: Barrett L 

PROVIDER: S-EPMC11487900 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature