Research Data Leeds Repository

Citation

Wright, Penny and Oyebode, Jan and Clare, Linda and Brayne, Carol and Al-Janabi, Hareth and Hoare, Zoe and Kind, Paul and Tennant, Alan and Pini, Simon and Megson, Molly and Ingleson, Emma (2018) Dementia Carers Instrument Development (DECIDE) - Qualitative interview data. University of Leeds. [Dataset] https://doi.org/10.5518/375

Dataset description

This dataset contains qualitative interview transcripts, obtained from 41 of 42 semi-structured interviews with a purposively diverse sample of primary carers aged ≥16 years, supporting a partner or family member who had a diagnosis of dementia and living in the community. Participants included 28 females, and 14 males (aged 31-83). The sample included 22 carers who were husband or wife of the person with dementia, and 20 who were daughters, sons, daughter-in-laws or granddaughters. Specific diagnoses of the person with dementia included Alzheimer's disease, vascular dementia, or other. Open questions were used to explore carers’ experiences, thoughts, and feelings related to challenging and rewarding experiences and events. Socratic questioning was employed, through asking carers to reflect on why particular experiences of care made them feel or think as they did. In this way, we aimed to uncover underlying needs that were impacted upon by the carer experience and generate nuanced contextualized accounts of how caring impacted on carers’ lives.

Additional information:	The consent terms for the interviews allowed retention for a restricted period of time, which has now elapsed. The interview transcripts are no longer available.
Keywords:	dementia, carers, interview, qualitative, transcripts, impact of caring, quality of life, needs-led, community, informal carer,sociodemographic, socratic questioning
Divisions:	Faculty of Medicine and Health > School of Medicine
Related resources:	Location Type https://web.archive.org/web/20230605105057/http://decideproject.co.uk/ Website https://doi.org/10.1093/geront/gnx148 Publication https://eprints.whiterose.ac.uk/122779/ Publication https://doi.org/10.1007/s40271-018-0334-4 Publication https://eprints.whiterose.ac.uk/136240/ Publication https://doi.org/10.1093/geront/gnz136 Publication https://eprints.whiterose.ac.uk/150691/ Publication https://radar.researchdata.leeds.ac.uk/6/ Dataset
Date deposited:	12 Sep 2018 13:35
URI:	https://archive.researchdata.leeds.ac.uk/id/eprint/417
Additional details Additional details Creators or authors: Creators ORCID Other ID Email Primary affiliation Primary affiliation ID Primary affiliation ID type Secondary affiliation Secondary affiliation ID Secondary affiliation ID type Wright, Penny https://orcid.org/0000-0001-6129-4143 University of Leeds https://ror.org/024mrxd33 ror Oyebode, Jan https://orcid.org/0000-0002-0263-8740 University of Bradford https://ror.org/00vs8d940 ror Clare, Linda https://orcid.org/0000-0003-3989-5318 University of Exeter https://ror.org/03yghzc09 ror Brayne, Carol https://orcid.org/0000-0001-5307-663X University of Cambridge https://ror.org/013meh722 ror Al-Janabi, Hareth https://orcid.org/0000-0002-3691-8310 University of Birmingham https://ror.org/03angcq70 ror Hoare, Zoe https://orcid.org/0000-0003-1803-5482 Bangor University https://ror.org/006jb1a24 ror Kind, Paul https://orcid.org/0000-0003-2377-1652 University of Leeds https://ror.org/024mrxd33 ror Tennant, Alan https://orcid.org/0000-0002-0728-2130 University of Leeds https://ror.org/024mrxd33 ror Pini, Simon https://orcid.org/0000-0001-8455-3240 University of Leeds https://ror.org/024mrxd33 ror Megson, Molly https://orcid.org/0000-0003-3291-5961 University of Leeds https://ror.org/024mrxd33 ror Ingleson, Emma https://orcid.org/0000-0001-6603-026X University of Leeds https://ror.org/024mrxd33 ror Type of data: Dataset Contributors: Contribution Name ORCID Other ID Email Primary affiliation Primary affiliation ID Primary affiliation ID type Secondary affiliation Secondary affiliation ID Secondary affiliation ID type Data curator Shearsmith, Leanne https://orcid.org/0000-0002-6575-0529 University of Leeds https://ror.org/024mrxd33 ror Research funders: Medical Research Council, National Institute for Health Research Grant numbers: MR/M025179/1 Publication date: 2018 Geographic coverage: United Kingdom Data collection method: Interviews Legal and ethical issues: Approved by NHS Health Research Authority South Central - Oxford B Research Ethics Committee:05 November 2015; 15/SC/0673 Resource language: English Metadata language: English Research project title: DECIDE Publisher: University of Leeds Contact email: e.p.wright@leeds.ac.uk Last Modified: 27 Jan 2025 15:50

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