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

Laura Barrett1, Julia Hackett1, Jo Taylor2

  • 1Paediatric Palliative Care Research Group, Department of Health Science, University of York, York, UK.

Palliative Medicine
|August 11, 2024
PubMed

Insights

Effective patient and public involvement (PPI) in paediatric palliative care research requires clear processes, balanced relationships, and mutual respect. Adequate resources and explicit agreements are crucial for successful and impactful PPI initiatives.

Area of Science:

  • Healthcare Research
  • Palliative Care
  • Patient and Public Involvement

Background:

  • Patient and Public Involvement (PPI) is integral to healthcare research.
  • Paediatric palliative care research presents unique ethical and practical challenges for PPI.
  • Regular evaluation of PPI activities is essential for improvement.

Purpose of the Study:

  • To evaluate the PPI activities within a paediatric palliative care research centre.
  • To identify successes and areas for improvement in PPI implementation.
  • To inform future strategies for effective PPI in this field.

Main Methods:

  • A two-stage evaluation approach was employed.
  • Stage one involved reviewing PPI study logs from 15 studies.
  • Stage two used qualitative methods: surveys, interviews, and a focus group with parents and researchers, followed by thematic analysis.

Main Results:

  • Funding was identified as critical for enabling PPI.
  • Key themes emerged: clarity of processes and purpose, the creation of safe spaces through balanced relationships, and the importance of mutual respect and value.
  • The evaluation highlighted both strengths and opportunities for enhancing the Centre's PPI approach.

Conclusions:

  • Meaningful PPI in paediatric palliative care necessitates sufficient time and resources.
  • Explicitly agreeing on roles, processes, and expectations is vital.
  • Building trusting relationships fosters authenticity and vulnerability, benefiting both research and participants. A 'route map' for impactful PPI was developed.
Abstract

Keywords:
Patient and public involvementchildevaluationpalliative careparentsqualitative research

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