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 Roberts, Linda, NWORTH Clinical Trials Unit, Bangor (2018) Dementia Carers Instrument Development (DECIDE) - data introduction. University of Leeds. [Dataset] https://doi.org/10.5518/433

Dataset description

The number of people living in the United Kingdom (UK) with dementia is rising. Having a caring role can have a huge impact on well-being, quality of life, and finances, yet without  support from informal carers, people with dementia would be dependent upon health and social care services, and government costs would be increased greatly. In 2015 the University of Leeds was awarded funding by the Medical Research Council and the National Institute for Health Research to carry out a three year project to develop a new questionnaire for measuring the quality of lives of individuals caring for someone with dementia. The study, called DECIDE (Dementia Carers Instrument Development) was led by the University of Leeds, alongside researchers from universities across the England and Wales. The measure, SIDECAR (Scales  measuring the Impact of DEmentia on CARers) will be brief and easy to complete making it useful in individual carer assessment as well as being used to inform service planning and potentially in service valuation. The project was undertaken in two stages. Stage one: A carer interview study to investigate the fundamental human needs of carers and using this information to develop potential items for SIDECAR (qualitative data). Stage two: Asking carers from across England and Wales to complete the items generated from stage one on three occasions along with other questionnaires and sociodemeographic information (quantitative data). These data were used to develop and evaluate the psychometric properties of SIDECAR. The data used to develop the questionnaire will be available to researchers until September 2023 . The quantitative and qualitative data are available through "Related resources" below. The quantitative data is openly available through DOI http://doi.org/10.5518/432. The qualitative data is available through DOI http://doi.org/10.5518/375 which will provide a summary and a link to request access.

Additional information:	The questionnaire “SIDECAR” is available through the Fast Licensing Platform at the University of Leeds: https://licensing.leeds.ac.uk
Keywords:	dementia, carers, interview, qualitative, transcripts, impact of caring, quality of life, needs-led, community, informal carer, sociodemographic, socratic questioning, quantitative, questionnaire
Subjects:	L000 - Social studies > L500 - Social work > L510 - Health & welfare
Divisions:	Faculty of Medicine and Health > School of Medicine > Leeds Institute of Health Sciences (LIHS)
Related resources:	Location Type http://decideproject.co.uk/ Website https://doi.org/10.1093/geront/gnx136 Publication https://doi.org/10.1093/geront/gnz148 Publication https://doi.org/10.5518/375 Dataset https://doi.org/10.5518/432 Dataset https://licensing.leeds.ac.uk/product/sidecar-scales-measuring-the-impact-of-dementia-on-carers Other
Date deposited:	17 Sep 2018 11:53
URI:	https://archive.researchdata.leeds.ac.uk/id/eprint/421
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 Roberts, Linda University of Leeds https://ror.org/024mrxd33 ror Corporate creators: NWORTH Clinical Trials Unit, Bangor 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 Project member 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 and questionnaire 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 Publisher: University of Leeds Copyright holders: SIDECAR “© Copyright Universities of Bangor, Birmingham, Bradford, Cambridge, Exeter & Leeds” Contact email: e.p.wright@leeds.ac.uk Last Modified: 31 Jul 2024 12:18

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