Spencer, B., Hugh-Jones, S., Cottrell, D. orcid.org/0000-0001-8674-0955 et al. (1 more author) (2023) The INSCHOOL project: showcasing participatory qualitative methods derived from patient and public involvement and engagement (PPIE) work with young people with long-term health conditions. Research Involvement and Engagement, 9 (1). 91.
Abstract
Background Evidence suggests resources and services benefit from being developed in collaboration with the young people they aim to support. Despite this, patient and public involvement and engagement (PPIE) with young people is often tokenistic, limited in engagement and not developmentally tailored to young people. Our paper aims to build knowledge and practice for meaningfully engaging with young people in research design, analysis and as research participants. Methods We report the participatory processes from the INSCHOOL project, examining long-term health conditions and schooling among 11–18 year olds. Young people were consulted at the inception of the project through a hospital- based youth forum. This began a partnership where young people co-designed study documents, informed the recruitment process, developed creative approaches to data collection, participated in pilot interviews, co-analysed the qualitative data and co-presented results. Results PPIE advisors, participants and researchers all benefitted from consistent involvement of young people throughout the project. Long-term engagement allowed advisors and researchers to build rapport and facilitated openness in sharing perspectives. PPIE advisors valued being able to shape the initial aims and language of the research questions, and contribute to every subsequent stage of the project. Advisors co-designed flexible data collection methods for the qualitative project that provided participants with choices in how they took part (interviews, focus groups, written tasks). Further choice was offered through co-designed preparation activities where participants completed one of four creative activities prior to the interview. Participants were therefore able to have control over how they participated and how they described their school experiences. Through participatory analysis meetings advisors used their first-hand experiences to inform the creation of themes and the language used to describe these themes. PPIE in every stage of the process helped researchers to keep the results grounded in young people’s experience and challenge their assumptions as adults.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. The Creative Commons Public Domain Dedication waiver (http:// creativecommons. org/ publi cdoma in/ zero/1. 0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
Keywords: | Patient and public involvement and engagement; Participatory methods; Qualitative methods; Creative methods; Young people; Children |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Psychiatry and Behavioural Sciences (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 12 Jan 2024 16:46 |
Last Modified: | 12 Jan 2024 16:46 |
Published Version: | http://dx.doi.org/10.1186/s40900-023-00496-5 |
Status: | Published |
Publisher: | Springer Science and Business Media LLC |
Identification Number: | 10.1186/s40900-023-00496-5 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:204990 |