Journal article
Living well while providing support: validation of LTCQ-Carer for assessing informal carers’ quality of life
- Abstract:
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Purpose Despite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus on how to evaluate the effectiveness of carer support. We aimed to develop and validate a new quality-of-life measure for carers (LTCQ-Carer) and to assess its potential for use within a clinical pathway.
Methods Psychometric properties of LTCQ-Carer were tested through cognitive interviews (qualitative phase) and a pilot survey (quantitative phase). Participants were family caregivers of people recently diagnosed with mild cognitive impairment (MCI) or dementia, recruited through one of 14 memory clinics in south-east England. They self-completed the new measure and comparative existing measures (EQ-5D, ASCOT-Carer). Ongoing feedback from memory clinic staff on potential use of LTCQ-Carer was collected.
Results Interview participants (n = 10) found all draft items of LTCQ-Carer relevant and prompted inclusion of a new item on ‘time to yourself’. Responses from survey participants (n = 107) indicated acceptability (low missing data), high internal reliability (Cronbach’s α = 0.95), and a general construct (single factor loadings 0.43–0.86 for all items). Observation of predicted associations with EQ-5D and ASCOT-Carer supported construct validity. Responsiveness requires further testing as evidence was inconclusive. Clinical staff feedback on potential use was positive.
Conclusion LTCQ-Carer is a valid new measure for assessing family caregivers’ quality of life across broad health and social care domains, expanding the range of high-quality tools for evaluating carer support. When used concurrently with patient assessment, it could highlight carer needs and prompt appropriate family support at the earliest point in the clinical pathway.
- Publication status:
- Published
- Peer review status:
- Peer reviewed
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- Files:
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(Preview, Version of record, pdf, 1.1MB, Terms of use)
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- Publisher copy:
- 10.1007/s11136-023-03485-z
Authors
- Publisher:
- Springer
- Journal:
- Quality of Life Research More from this journal
- Volume:
- 32
- Issue:
- 12
- Pages:
- 3507–3520
- Place of publication:
- Netherlands
- Publication date:
- 2023-08-02
- Acceptance date:
- 2023-07-08
- DOI:
- EISSN:
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1573-2649
- ISSN:
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0962-9343
- Pmid:
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37530960
- Language:
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English
- Keywords:
- Pubs id:
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1501350
- Local pid:
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pubs:1501350
- Deposit date:
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2023-10-30
Terms of use
- Copyright holder:
- Potter et al.
- Copyright date:
- 2023
- Rights statement:
- © The Author(s) 2023. Open Access. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.
- Licence:
- CC Attribution (CC BY)
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