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 Shearsmith, Leanne and Megson, Molly and Roberts, Linda, NWORTH Clinical Trials Unit, Bangor (2018) Dementia Carers Instrument Development (DECIDE) Workstream 1 Phase 3 data. University of Leeds. [Dataset] https://doi.org/10.5518/432

Dataset description

This dataset contains survey data (quantitative) collected at two of three time points from informal carers of people with dementia who live in the community: at baseline (T1; n=570) and for a subset of carers six months later (T3; n=173). Test-retest data (T2) are not included in the dataset. Carers were defined as a person who provides care for a relative, friend or neighbour with dementia, who cannot cope without their support. This care may include practical household tasks, personal care, supervision, emotional support and social interaction. Carers were eligible to take part if aged ≥16 years, with capacity and English literate, and a primary carer for a partner, family member, friend or neighbour who had a diagnosis of dementia and who lives in the community. Seventy items were included that were generated from the qualitative interviews in DECIDE Phase 1. Data also included responses from the validated questionnaires EQ-5D-3L (Williams A. Euroqol - A new facility for the measurement of health-related quality-of-life. Health Policy. 1990;16(3):199-208.) and from the SWEMWBS (Tennant, R. et al. The Warwick-Edinburgh mental well-being scale (WEMWBS): development and UK validation. Health Qual Life Outcomes. 2007;5). Carers also completed sociodemographic questions.

Keywords:	dementia, carers, psychometric, evaluation, quantitative, questionnaire, development, quality of life, needs-led, community, informal carer, burden, sociodemographic, SWEMWBS, EQ-5D
Subjects:	L000 - Social studies > L500 - Social work > L510 - Health & welfare
Divisions:	Faculty of Medicine and Health > School of Medicine
Related resources:	Location Type http://decideproject.co.uk/ Website https://doi.org/10.1093/geront/gnx148 Publication https://doi.org/10.1093/geront/gnz136 Publication
Date deposited:	17 Sep 2018 11:36
URI:	https://archive.researchdata.leeds.ac.uk/id/eprint/420
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 Shearsmith, Leanne https://orcid.org/0000-0002-6575-0529 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 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: Questionnaire Legal and ethical issues: Ethical approval was awarded by the Health Research Authority South West - Exeter Research Ethics Committee (16/SW/0280). 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 13:09

Files

Documentation

Dataset description [205kB] Dataset description [205kB] Dataset description [205kB] Security: Anyone File name: dataset_description.pdf Content type: Documentation Mime-Type: application/pdf File size: 205kB

Workstream 1 Phase 3 Consent Form [65kB] Workstream 1 Phase 3 Consent Form [65kB] Workstream 1 Phase 3 Consent Form [65kB] Security: Anyone File name: DECIDE_Workstream_1_Phase_3_Consent_Form.pdf Content type: Documentation Mime-Type: application/pdf File size: 65kB

Workstream 1 Phase 3 Participant Information Sheet [347kB] Workstream 1 Phase 3 Participant Information Sheet [347kB] Workstream 1 Phase 3 Participant Information Sheet [347kB] Security: Anyone File name: DECIDE_Workstream_1_Phase_3_Participant_Information_Sheet.pdf Content type: Documentation Mime-Type: application/pdf File size: 347kB

Workstream 1 Phase 3 Timepoint 1 Questionnaire Cover Sheet [475kB] Workstream 1 Phase 3 Timepoint 1 Questionnaire Cover Sheet [475kB] Workstream 1 Phase 3 Timepoint 1 Questionnaire Cover Sheet [475kB] Security: Anyone File name: DECIDE_Workstream_1_Phase_3_Timepoint_1_Questionnaire_Cover_Sheet.pdf Content type: Documentation Mime-Type: application/pdf File size: 475kB

Workstream 1 Phase 3 Timepoint 3 Questionnaire Cover Sheet [1MB] Workstream 1 Phase 3 Timepoint 3 Questionnaire Cover Sheet [1MB] Workstream 1 Phase 3 Timepoint 3 Questionnaire Cover Sheet [1MB] Security: Anyone File name: DECIDE_Workstream_1_Phase_3_Timepoint_3_Questionnaire_Cover_Sheet.pdf Content type: Documentation Mime-Type: application/pdf File size: 1MB

Data

T1 data coding [18kB] T1 data coding [18kB] T1 data coding [18kB] Security: Anyone File name: T1_data_coding.xlsx Content type: Data Mime-Type: application/vnd.openxmlformats-officedocument.spreadsheetml.sheet File size: 18kB

T1 baseline data [120kB] T1 baseline data [120kB] T1 baseline data [120kB] Security: Anyone File name: T1_Data_n570.SAV Content type: Data File size: 120kB

T3 data coding [17kB] T3 data coding [17kB] T3 data coding [17kB] Security: Anyone File name: T3_data_coding.xlsx Content type: Data Mime-Type: application/vnd.openxmlformats-officedocument.spreadsheetml.sheet File size: 17kB

T3 sensitivity to change data [49kB] T3 sensitivity to change data [49kB] T3 sensitivity to change data [49kB] Security: Anyone File name: T3_Data_n173.sav Content type: Data File size: 49kB