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, Batty, GD, Eton, DT, Langhorne, P and Mair, FS (2013). Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research. [Dataset]. PLOS Medicine. https://doi.org/10.1371/journal.pmed.1001473.s005

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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.

Keywords

Stroke, Health services research, Communication in health care, Health services administration and management, Patients, Mental health and psychiatry, Qualitative studies, Systematic reviews

Item Type	Dataset
Description of data capture	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.
Capture method	Aggregation
Date	25 May 2013
Language(s) of written materials	English
Creator(s)	Gallacher, K, Morrison, D, Jani, B, Macdonald, S, May, CR , Montori, VM, Erwin, PJ, Batty, GD, Eton, DT, Langhorne, P and Mair, FS
LSHTM Faculty/Department	Faculty of Public Health and Policy > Dept of Health Services Research and Policy
Participating Institutions	Study consortium
Date Deposited	18 Mar 2019 16:51
Last Modified	08 Oct 2024 10:52
Publisher	PLOS Medicine