Ethics and patient and public involvement with children and young people

Title

Ethics and patient and public involvement with children and young people

Creator

Mitchell S J; Slowther A; Coad J; Akhtar S; Hyde E; Khan D; Dale J

Publisher

Archives of Disease in Childhood - Education and Practice

Date

2019

Subject

Humans; Adolescent; Child; Female; Male; Middle Aged; Adult; Guidelines as Topic; Patient Participation/px [Psychology]; United Kingdom; Research Personnel/px [Psychology]; Health Services Research/es [Ethics]; Health Services Research/st [Standards]; Patient Participation/sn [Statistics & Numerical Data]; Research Design/st [Standards]; Research Personnel/es [Ethics]; Research Personnel/st [Standards]

Description

Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work. Copyright © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2019. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

August 2020 List

Collection

Citation

Mitchell S J; Slowther A; Coad J; Akhtar S; Hyde E; Khan D; Dale J, “Ethics and patient and public involvement with children and young people,” Pediatric Palliative Care Library, accessed July 25, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17178.

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