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. [Online]. PLOS Medicine. Available from: https://doi.org/10.1371/journal.pmed.1001473.s005

Gallacher, K, Morrison, D, Jani, B, Macdonald, S, May, CR, Montori, VM, Erwin, PJ, Batty, GD, Eton, DT, Langhorne, P and Mair, FS. Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research [Internet]. PLOS Medicine; 2013. Available from: https://doi.org/10.1371/journal.pmed.1001473.s005

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. [Data Collection]. PLOS Medicine. https://doi.org/10.1371/journal.pmed.1001473.s005

Methods

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.
Data capture method	Aggregation
Date (Date published in a 3rd party system)	25 May 2013
Language(s) of written materials	English

People & Groups

Data Creators	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