Cargando…

An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research

BACKGROUND: The 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 emotion...

Descripción completa

Detalles Bibliográficos
Autores principales: Mitchell, Sarah J, Slowther, Anne-Marie, Coad, Jane, Khan, Dena, Samani, Mohini, Dale, Jeremy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8022075/
https://www.ncbi.nlm.nih.gov/pubmed/33726608
http://dx.doi.org/10.1177/0269216321999301
_version_ 1783674870107734016
author Mitchell, Sarah J
Slowther, Anne-Marie
Coad, Jane
Khan, Dena
Samani, Mohini
Dale, Jeremy
author_facet Mitchell, Sarah J
Slowther, Anne-Marie
Coad, Jane
Khan, Dena
Samani, Mohini
Dale, Jeremy
author_sort Mitchell, Sarah J
collection PubMed
description BACKGROUND: The 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. AIM: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. DESIGN: Anonymous 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 / PARTICIPANTS: Young 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. RESULTS: Feedback 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. CONCLUSIONS: Young 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.
format Online
Article
Text
id pubmed-8022075
institution National Center for Biotechnology Information
language English
publishDate 2021
publisher SAGE Publications
record_format MEDLINE/PubMed
spelling pubmed-80220752021-04-16 An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research Mitchell, Sarah J Slowther, Anne-Marie Coad, Jane Khan, Dena Samani, Mohini Dale, Jeremy Palliat Med Short Reports BACKGROUND: The 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. AIM: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. DESIGN: Anonymous 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 / PARTICIPANTS: Young 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. RESULTS: Feedback 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. CONCLUSIONS: Young 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. SAGE Publications 2021-03-17 2021-04 /pmc/articles/PMC8022075/ /pubmed/33726608 http://dx.doi.org/10.1177/0269216321999301 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/ This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Short Reports
Mitchell, Sarah J
Slowther, Anne-Marie
Coad, Jane
Khan, Dena
Samani, Mohini
Dale, Jeremy
An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research
title An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research
title_full An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research
title_fullStr An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research
title_full_unstemmed An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research
title_short An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research
title_sort evaluation of the experiences of young people in patient and public involvement for palliative care research
topic Short Reports
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8022075/
https://www.ncbi.nlm.nih.gov/pubmed/33726608
http://dx.doi.org/10.1177/0269216321999301
work_keys_str_mv AT mitchellsarahj anevaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT slowtherannemarie anevaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT coadjane anevaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT khandena anevaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT samanimohini anevaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT dalejeremy anevaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT mitchellsarahj evaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT slowtherannemarie evaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT coadjane evaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT khandena evaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT samanimohini evaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch
AT dalejeremy evaluationoftheexperiencesofyoungpeopleinpatientandpublicinvolvementforpalliativecareresearch