Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.

<h4>Background</h4>Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed 'treatment burden' and has been associated with unfavourable outcomes. The aim of this systematic review is to examine th...

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Autores principales:	Katie Gallacher, Deborah Morrison, Bhautesh Jani, Sara Macdonald, Carl R May, Victor M Montori, Patricia J Erwin, G David Batty, David T Eton, Peter Langhorne, Frances S Mair
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2013
Materias:	Medicine R
Acceso en línea:	https://doaj.org/article/b6c874f99dfd44bc9facbdf76d2eacea
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spelling	oai:doaj.org-article:b6c874f99dfd44bc9facbdf76d2eacea2021-11-18T05:42:33ZUncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.1549-12771549-167610.1371/journal.pmed.1001473https://doaj.org/article/b6c874f99dfd44bc9facbdf76d2eacea2013-01-01T00:00:00Zhttps://www.ncbi.nlm.nih.gov/pmc/articles/pmid/23824703/?tool=EBIhttps://doaj.org/toc/1549-1277https://doaj.org/toc/1549-1676<h4>Background</h4>Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed 'treatment burden' and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.<h4>Methods and findings</h4>The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.<h4>Conclusions</h4>Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.Katie GallacherDeborah MorrisonBhautesh JaniSara MacdonaldCarl R MayVictor M MontoriPatricia J ErwinG David BattyDavid T EtonPeter LanghorneFrances S MairPublic Library of Science (PLoS)articleMedicineRENPLoS Medicine, Vol 10, Iss 6, p e1001473 (2013)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R
spellingShingle	Medicine R Katie Gallacher Deborah Morrison Bhautesh Jani Sara Macdonald Carl R May Victor M Montori Patricia J Erwin G David Batty David T Eton Peter Langhorne Frances S Mair Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.
description	<h4>Background</h4>Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed 'treatment burden' and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.<h4>Methods and findings</h4>The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.<h4>Conclusions</h4>Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.
format	article
author	Katie Gallacher Deborah Morrison Bhautesh Jani Sara Macdonald Carl R May Victor M Montori Patricia J Erwin G David Batty David T Eton Peter Langhorne Frances S Mair
author_facet	Katie Gallacher Deborah Morrison Bhautesh Jani Sara Macdonald Carl R May Victor M Montori Patricia J Erwin G David Batty David T Eton Peter Langhorne Frances S Mair
author_sort	Katie Gallacher
title	Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.
title_short	Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.
title_full	Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.
title_fullStr	Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.
title_full_unstemmed	Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.
title_sort	uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.
publisher	Public Library of Science (PLoS)
publishDate	2013
url	https://doaj.org/article/b6c874f99dfd44bc9facbdf76d2eacea
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Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.

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