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

Dominika M. Pindus, Ricky Mullis, Lisa Lim, Ian Wellwood, A. Viona Rundell, Noorazah Abd Aziz, Jonathan Mant

Research output: Contribution to journalReview article

15 Citations (Scopus)

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.

Original languageEnglish
Article numbere0192533
JournalPLoS One
Volume13
Issue number2
DOIs
Publication statusPublished - 1 Feb 2018

Fingerprint

Cultural Anthropology
Community Health Services
anthropology
Fluidity
Social Welfare
systematic review
health care workers
stroke
health services
Caregivers
Survivors
Primary Health Care
Stroke
Health
Wood
Continuity of Patient Care
Delivery of Health Care
Independent Living
Health Literacy
literacy

ASJC Scopus subject areas

  • Biochemistry, Genetics and Molecular Biology(all)
  • Agricultural and Biological Sciences(all)

Cite this

Stroke survivors’ and informal caregivers’ experiences of primary care and community healthcare services – A systematic review and meta-ethnography. / Pindus, Dominika M.; Mullis, Ricky; Lim, Lisa; Wellwood, Ian; Rundell, A. Viona; Abd Aziz, Noorazah; Mant, Jonathan.

In: PLoS One, Vol. 13, No. 2, e0192533, 01.02.2018.

Research output: Contribution to journalReview article

Pindus, Dominika M. ; Mullis, Ricky ; Lim, Lisa ; Wellwood, Ian ; Rundell, A. Viona ; Abd Aziz, Noorazah ; Mant, Jonathan. / Stroke survivors’ and informal caregivers’ experiences of primary care and community healthcare services – A systematic review and meta-ethnography. In: PLoS One. 2018 ; Vol. 13, No. 2.
@article{93e638e1ca8349c992349536dcc841a8,
title = "Stroke survivors’ and informal caregivers’ experiences of primary care and community healthcare services – A systematic review and meta-ethnography",
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.",
author = "Pindus, {Dominika M.} and Ricky Mullis and Lisa Lim and Ian Wellwood and Rundell, {A. Viona} and {Abd Aziz}, Noorazah and Jonathan Mant",
year = "2018",
month = "2",
day = "1",
doi = "10.1371/journal.pone.0192533",
language = "English",
volume = "13",
journal = "PLoS One",
issn = "1932-6203",
publisher = "Public Library of Science",
number = "2",

}

TY - JOUR

T1 - Stroke survivors’ and informal caregivers’ experiences of primary care and community healthcare services – A systematic review and meta-ethnography

AU - Pindus, Dominika M.

AU - Mullis, Ricky

AU - Lim, Lisa

AU - Wellwood, Ian

AU - Rundell, A. Viona

AU - Abd Aziz, Noorazah

AU - Mant, Jonathan

PY - 2018/2/1

Y1 - 2018/2/1

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85042383263&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85042383263&partnerID=8YFLogxK

U2 - 10.1371/journal.pone.0192533

DO - 10.1371/journal.pone.0192533

M3 - Review article

C2 - 29466383

AN - SCOPUS:85042383263

VL - 13

JO - PLoS One

JF - PLoS One

SN - 1932-6203

IS - 2

M1 - e0192533

ER -