Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research

Objective: The lack of adequate conceptualisation and operationalisation of quality of life (QoL) limits the ability to have a consistent body of evidence to improve QoL research and practice in informal caregiving for people with multiple sclerosis (MS). Thus, we conducted a meta-synthesis of...

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Main Authors: Topcu, Gogem, Buchanan, Heather, Aubeeluck, Aime, Garip, Gülcan
Format: Article
Published: Taylor and Francis online 2016
Subjects:
Online Access:https://eprints.nottingham.ac.uk/41699/
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author Topcu, Gogem
Buchanan, Heather
Aubeeluck, Aime
Garip, Gülcan
author_facet Topcu, Gogem
Buchanan, Heather
Aubeeluck, Aime
Garip, Gülcan
author_sort Topcu, Gogem
building Nottingham Research Data Repository
collection Online Access
description Objective: The lack of adequate conceptualisation and operationalisation of quality of life (QoL) limits the ability to have a consistent body of evidence to improve QoL research and practice in informal caregiving for people with multiple sclerosis (MS). Thus, we conducted a meta-synthesis of qualitative research to improve the conceptual understanding of the experiences of MS carers and to identify factors that affect carers' QoL. Design: Systematic searches of five electronic databases yielded 17 qualitative studies which were synthesised using the principles of meta-ethnography. Results: The synthesis resulted in nine inter-linking themes: Changes and losses; challenges revolving around MS; caregiving demands; burden of care; future concerns; external stressors; experiences of support; strategies used in managing the caregiving role; and motivating factors. Our findings suggest that MS carers can have both positive and negative experiences which may bring challenges and rewards to the carers. Conclusion: We present a proposed QoL model for MS caregiving which can be used to inform the development of interventions for MS carers to improve their QoL. However, further empirical research is needed to examine the utility of this model and to explore the concept of QoL in MS carers in more detail.
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spelling nottingham-416992020-05-04T17:37:36Z https://eprints.nottingham.ac.uk/41699/ Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research Topcu, Gogem Buchanan, Heather Aubeeluck, Aime Garip, Gülcan Objective: The lack of adequate conceptualisation and operationalisation of quality of life (QoL) limits the ability to have a consistent body of evidence to improve QoL research and practice in informal caregiving for people with multiple sclerosis (MS). Thus, we conducted a meta-synthesis of qualitative research to improve the conceptual understanding of the experiences of MS carers and to identify factors that affect carers' QoL. Design: Systematic searches of five electronic databases yielded 17 qualitative studies which were synthesised using the principles of meta-ethnography. Results: The synthesis resulted in nine inter-linking themes: Changes and losses; challenges revolving around MS; caregiving demands; burden of care; future concerns; external stressors; experiences of support; strategies used in managing the caregiving role; and motivating factors. Our findings suggest that MS carers can have both positive and negative experiences which may bring challenges and rewards to the carers. Conclusion: We present a proposed QoL model for MS caregiving which can be used to inform the development of interventions for MS carers to improve their QoL. However, further empirical research is needed to examine the utility of this model and to explore the concept of QoL in MS carers in more detail. Taylor and Francis online 2016-02-09 Article PeerReviewed Topcu, Gogem, Buchanan, Heather, Aubeeluck, Aime and Garip, Gülcan (2016) Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research. Psychology & Health, 31 (6). pp. 693-710. ISSN 0887-0446 Informal carers Meta-ethnography Meta-synthesis Multiple sclerosis Quality of life https://doi.org/10.1080/08870446.2016.1139112 doi:10.1080/08870446.2016.1139112 doi:10.1080/08870446.2016.1139112
spellingShingle Informal carers
Meta-ethnography
Meta-synthesis
Multiple sclerosis
Quality of life
Topcu, Gogem
Buchanan, Heather
Aubeeluck, Aime
Garip, Gülcan
Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research
title Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research
title_full Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research
title_fullStr Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research
title_full_unstemmed Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research
title_short Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research
title_sort caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research
topic Informal carers
Meta-ethnography
Meta-synthesis
Multiple sclerosis
Quality of life
url https://eprints.nottingham.ac.uk/41699/
https://eprints.nottingham.ac.uk/41699/
https://eprints.nottingham.ac.uk/41699/