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

Gallacher, K. et al. (2013) Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research. PLoS Medicine, 10(6), e1001473. (doi:10.1371/journal.pmed.1001473)

[img]
Preview
Text
81532.pdf - Published Version
Available under License Creative Commons Attribution.

609kB

Abstract

<b>Background</b> 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.<p></p> <b>Methods and findings</b> 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.<p></p> <b>Conclusions</b> 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.

Item Type:Articles
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Batty, Dr G and Jani, Dr Bhautesh and Gallacher, Dr Katie and Morrison, Dr Deborah and Mair, Professor Frances and Langhorne, Professor Peter and Macdonald, Dr Sara
Authors: Gallacher, K., Morrison, D., Jani, B., Macdonald, S., May, C.R., Montori, V.M., Erwin, P.J., Batty, G.D., Eton, D.T., Langhorne, P., and Mair, F.S.
College/School:College of Medical Veterinary and Life Sciences > Institute of Health and Wellbeing > General Practice and Primary Care
College of Medical Veterinary and Life Sciences > Institute of Cardiovascular and Medical Sciences
College of Medical Veterinary and Life Sciences > Institute of Health and Wellbeing > Public Health
Journal Name:PLoS Medicine
Publisher:Public Library of Science
ISSN:1549-1277
ISSN (Online):1549-1676
Copyright Holders:Copyright © 2013 The Authors
First Published:First published in PLoS Medicine 10(6):e1001473
Publisher Policy:Reproduced under a Creative Commons License

University Staff: Request a correction | Enlighten Editors: Update this record