ArticlePalliative medicine2024
Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement.
Article in Palliative medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
3 citing papers in PubMed.
- Evaluation Tools for Patient and Public Involvement (PPI) in Health Research: A Scoping Review.The patient · 2026Article
- Engaging Children and Young People in Pediatric Palliative Care Research: A Scoping Review Protocol of Patient and Public Involvement Practices.HRB open research · 2025Article
- Patient and public involvement in clinical trials to improve outcomes for adults with multimorbidity in primary care and community settings: A systematic review protocol.Journal of multimorbidity and comorbidityArticle
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient 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.
aimTo 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.
designTwo 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/
participantsParents of children with life-limiting conditions, bereaved parents and researchers, all engaged in PPI activity within a paediatric palliative care research centre.
findingsThe 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.
conclusionsTo 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.