ArticlePalliative medicine2021
An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research.
Article in Palliative medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 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.
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Who cites it
12 citing papers in PubMed, 12 citations in OpenAlex.
- A Youth-Led Evaluation of Adolescent Involvement in a Project on Development of Guidelines for Adolescent Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Exploring Responsible Research and Innovation (RRI) in youth mental health: reflections from researchers and young people.Research involvement and engagement · 2026Article
- How are agency and autonomy understood in children's palliative and end-of-life care?: A narrative review.Palliative care and social practice · 2026Review
- 'Co-Production Is Caring': Young People's Reflections on Responsible and Dialogic Co-Production in Youth Mental Health.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Progressing participatory research with young people in India: how a youth advisory board supported a large mental health project in Bengaluru.Research involvement and engagement · 2025Article
- The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Exploring Experiences and Designing Guidance for Involving and Engaging Children and Young People in James Lind Alliance Priority Setting Partnerships.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Engaging Children and Young People in Pediatric Palliative Care Research: A Scoping Review Protocol of Patient and Public Involvement Practices.HRB open research · 2025Article
- Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement.Palliative medicine · 2024Article
- 'It's Powerful' The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- A qualitative study exploring the benefits of involving young people in mental health research.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric Clinical Research: Lessons Learned.Therapeutic innovation & regulatory science · 2022Review
Corrections and comments
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Authors and funding
6 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundThe active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care.
aimTo evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study.
designAnonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo. SETTING /
participantsYoung people aged 12-22 years who were members of existing advisory groups at a children's hospital, hospice and the clinical research network in the West Midlands, UK.
resultsFeedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area.(2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued.
conclusionsYoung people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important.
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What OpenQuestion holds
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.