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.
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 th...
| Publicado en: | Progress in Palliative Care Vol. 32; no. 6; pp. 438 - 446 |
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| Autores principales: | , , , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Taylor & Francis Ltd
Dec2024
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=180828001&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 180828001 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09699260 131V jtl: Progress in Palliative Care issn: 09699260 maglogo: N pubinfo: dt: Dec2024 vid: 32 iid: 6 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 180828001 179080849 180828001 180828001 10.1080/09699260.2024.2375823 180828001 ppf: 438 ppct: 8 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: 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. aug: au: Earle, Sarah Blackburn, Maddie Chambers, Lizzie Downing, Julia Flemming, Kate Hale, Jamie Marston, Hannah R. O'Dell, Lindsay Sinason, Valerie affil: Nottingham Trent University, UK sug: subj: Terminally Ill Patients In Adulthood Patient Attitudes Palliative Care Research, Medical Research Subjects Human Qualitative Studies Descriptive Statistics Data Analysis Software Male Female Adult Young Adult Multidisciplinary Care Team Purposive Sample Grounded Theory Research Ethics Adult: 19-44 years Male Female ab: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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