UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

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

Gallacher, K; Morrison, D; Jani, B; Macdonald, S; May, CR; Montori, VM; Erwin, PJ; ... Mair, FS; + view all (2013) Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research. PLoS Medicine , 10 (6) , Article e1001473. 10.1371/journal.pmed.1001473. Green open access

[thumbnail of journal.pmed.1001473.pdf] PDF
journal.pmed.1001473.pdf

Download (542kB)

Abstract

Background: 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. Methods and Findings: 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. Conclusions: 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.

Type: Article
Title: Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1371/journal.pmed.1001473
Publisher version: http://dx.doi.org/10.1371/journal.pmed.1001473
Language: English
Additional information: This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by-nc/3.0/), which permits use, distribution, and reproduction in any medium, provided that that reuse is restricted to non-commercial purposes, i.e. research or educational use, and the original work is properly cited.
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Epidemiology and Public Health
URI: https://discovery.ucl.ac.uk/id/eprint/1399648
Downloads since deposit
153Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item