Barrett, Laura Margaret Alice orcid.org/0000-0002-0163-764X, Hackett, Julia orcid.org/0000-0003-1720-6665, Taylor, Jo orcid.org/0000-0001-5898-0900 et al. (3 more authors) (2024) Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement. Palliative Medicine. ISSN 0269-2163
Abstract
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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Keywords: | PALLIATIVE CARE,CHILDREN,patient and public involvement (PPI),EVALUATION |
Dates: |
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Institution: | The University of York |
Academic Units: | The University of York > Faculty of Sciences (York) > Health Sciences (York) The University of York > Faculty of Social Sciences (York) > The York Management School |
Depositing User: | Pure (York) |
Date Deposited: | 19 Sep 2024 14:40 |
Last Modified: | 07 Mar 2025 00:10 |
Published Version: | https://doi.org/10.1177/02692163241266374 |
Status: | Published online |
Refereed: | Yes |
Identification Number: | 10.1177/02692163241266374 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:217414 |
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Description: barrett-et-al-2024-evaluating-parent-and-public-involvement-activities-within-a-paediatric-palliative-care-research
Licence: CC-BY-NC 2.5