It's bittersweet, it's uncomfortable, yes, but it's necessary. Methodological reflections on the experiences of young adults with life-shortening conditions on being involved in inclusive qualitative research

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Earle, S ORCID: https://orcid.org/0000-0003-2810-5659, Blackburn, M, Chambers, L, Downing, J, Flemming, K, Hale, J, Marston, HR, O’Dell, L and Sinason, V, 2024. It's bittersweet, it's uncomfortable, yes, but it's necessary. Methodological reflections on the experiences of young adults with life-shortening conditions on being involved in inclusive qualitative research. Progress in Palliative Care, 32 (6), pp. 438-445. ISSN 0969-9260

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Official URL: https://doi.org/10.1080/09699260.2024.2375823

Abstract

Research in palliative care is regarded as ethically challenging although there is increasing recognition that such research is important. Young adults with life-shortening conditions were not expected to reach adulthood but this population is growing and there is limited research that focuses on their lives or their experiences of engaging in research. The study explored the unintended consequences of pandemic control measures on the lives of young adults living with life-shortening conditions in the United Kingdom. This paper focuses on some of the methodological issues arising from this study, drawing on data that explores participants’ experiences of taking part. This is an interpretivist and inclusive qualitative study co-produced with three experts by experience using constructivist Grounded Theory method conducted during the first wave of the Coronavirus pandemic. In-depth interviews using a topic guide were transcribed verbatim and analysed iteratively until the point of data saturation. Twenty-six young adults aged 22–40 (17 female; 9 male), reporting a wide range of life-limiting and/or life-threatening conditions including rare and undiagnosed conditions and co-morbidities. Through analysis we identify four key themes focusing on participants’ experiences of taking part in the research: helping others and influencing change; reciprocity and support; therapeutic value; and (in)visibility and legacy. This paper offers methodological reflections on research in palliative care drawing on qualitative co-produced research involving young adults with life-shortening conditions. Our findings indicate that although participating in research can feel uncomfortable, this is outweighed by the perceived benefits of contributing to research.

Item Type:	Journal article
Publication Title:	Progress in Palliative Care
Creators:	Earle, S., Blackburn, M., Chambers, L., Downing, J., Flemming, K., Hale, J., Marston, H.R., O’Dell, L. and Sinason, V.
Publisher:	Informa UK Limited
Date:	November 2024
Volume:	32
Number:	6
ISSN:	0969-9260
Identifiers:	Number Type 10.1080/09699260.2024.2375823 DOI 2224829 Other
Rights:	© 2024 the author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.
Divisions:	Schools > School of Social Sciences
Record created by:	Laura Borcherds
Date Added:	25 Sep 2024 08:40
Last Modified:	14 Jan 2025 09:41
URI:	https://irep.ntu.ac.uk/id/eprint/52297