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Informal carers’ experiences of caring for someone with Multiple Sclerosis: A photovoice investigation

Topcu, Gogem; Buchanan, Heather; Aubeeluck, Aimee; �lsever, Hatice

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Authors

GOGEM TOPCU GOGEM.TOPCU@NOTTINGHAM.AC.UK
Programme Manager (Neuroms)

Aimee Aubeeluck

Hatice �lsever



Abstract

Objectives: This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context. Design: Real-time qualitative design using the photovoice method. Methods: Twelve MS carers (aged 30–73years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narratives for each photograph based on their experiences of caregiving. In total, 126 photographs and their corresponding narratives were analysed using content analysis. Results: Seven inter-related themes were identified. MS caregiving-related challenges, sense of loss (e.g., loss of activities), emotional impact (e.g., feeling lonely), urge to escape, and sense of anxiety over the unpredictability of MS carer role were discussed in relation to the negative experiences that compromised their QoL. The themes precious moments (e.g., time spent with loved ones or hobbies) and helpful support (e.g., family and pets) encompassed participants’ positive experiences that enhanced their QoL. Conclusions: Findings demonstrated the multi-faceted and complex nature of MS caregiver’s QoL and highlighted that although the experiences of MS carers were mostly negative, there were also some positive aspects to caregiving, that helped enhance carers’ QoL by ameliorating these negative experiences. These findings can be used to inform support programmes and enhance service provision for MS carers.

Citation

Topcu, G., Buchanan, H., Aubeeluck, A., & Ülsever, H. (2021). Informal carers’ experiences of caring for someone with Multiple Sclerosis: A photovoice investigation. British Journal of Health Psychology, 26(2), 360-384. https://doi.org/10.1111/bjhp.12482

Journal Article Type Article
Acceptance Date Oct 5, 2020
Online Publication Date Oct 31, 2020
Publication Date 2021-05
Deposit Date Oct 7, 2020
Publicly Available Date Nov 1, 2021
Journal British Journal of Health Psychology
Print ISSN 1359-107X
Electronic ISSN 2044-8287
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 26
Issue 2
Pages 360-384
DOI https://doi.org/10.1111/bjhp.12482
Keywords Applied Psychology; General Medicine
Public URL https://nottingham-repository.worktribe.com/output/4944542
Publisher URL https://bpspsychub.onlinelibrary.wiley.com/doi/10.1111/bjhp.12482

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