Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement-Reference-Cited by-同舟云学术

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

Published:2024-08-10 Issue: Volume: Page:
ISSN:0269-2163
Container-title:Palliative Medicine
language:en
Short-container-title:Palliat Med

Author:

Barrett Laura¹^ORCID,Hackett Julia¹^ORCID,Taylor Jo²^ORCID,Papworth Andrew³^ORCID,Walker Gabriella⁴,Fraser Lorna⁵^ORCID

Affiliation:

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

2. Department of Health Science, University of York, York, UK

3. School for Business and Society, University of York, York, UK

4. Paediatric Palliative Care Research Group Family Advisory Board, York, UK

5. Cicely Saunders Institute and Department of Women’s and Children’s Health, King’s College London, London, UK

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 palliative care research centre. Findings: The review of PPI logs for 15 studies highlighted the crucial role of funding in enabling PPI throughout the research. Eight parents completed the survey, 4 parents were interviewed and 12 researchers participated in a focus group. Three themes were developed: Clarity of processes and purpose; balanced relationships created a safe space; and mutual respect and value for PPI. These themes highlight what is working well within the Centre’s approach to PPI and the opportunities to improve. Conclusions: 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.

Publisher

SAGE Publications

Link

https://journals.sagepub.com/doi/pdf/10.1177/02692163241266374

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