Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services - A systematic review and meta-ethnography

Journal article


Pindus, Dominika M., Mullis, Ricky, Lim, Lisa, Wellwood, Ian, Rundell, A. Viona, Aziz, Noor Azah Abd and Mant, Jonathan. (2018). Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services - A systematic review and meta-ethnography. PLoS ONE. 13(2), p. Article e0192533. https://doi.org/10.1371/journal.pone.0192533
AuthorsPindus, Dominika M., Mullis, Ricky, Lim, Lisa, Wellwood, Ian, Rundell, A. Viona, Aziz, Noor Azah Abd and Mant, Jonathan
Abstract

Objective
To describe and explain stroke survivors and informal caregivers’ experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services.

Design
Systematic review and meta-ethnography.

Data sources
Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).

Eligibility criteria
Primary qualitative studies focused on adult community-dwelling stroke survivors’ and/or informal caregivers’ experiences of primary care and/or community healthcare services.

Data synthesis
A set of common second order constructs (original authors’ interpretations of participants’ experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods’ criteria.

Results
51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke.

Limitations
Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems.

Conclusions
Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services.

Systematic review registration number
PROSPERO 2015:CRD42015026602

Year2018
JournalPLoS ONE
Journal citation13 (2), p. Article e0192533
PublisherPublic Library of Science
ISSN1932-6203
Digital Object Identifier (DOI)https://doi.org/10.1371/journal.pone.0192533
PubMed ID29466383
Scopus EID2-s2.0-85042383263
PubMed Central IDPMC5821463
Open accessPublished as ‘gold’ (paid) open access
Research or scholarlyScholarly
Page range1-23
FunderNational Institute for Health Research (NIHR)
Publisher's version
License
File Access Level
Open
Output statusPublished
Publication dates
Online21 Feb 2018
Publication process dates
Accepted25 Jan 2018
Deposited25 Aug 2022
Grant IDPTC-RP-PG-0213-20001
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https://acuresearchbank.acu.edu.au/item/8y2x1/stroke-survivors-and-informal-caregivers-experiences-of-primary-care-and-community-healthcare-services-a-systematic-review-and-meta-ethnography

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