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

Date Published: February 21, 2018

Publisher: Public Library of Science

Author(s): Dominika M. Pindus, Ricky Mullis, Lisa Lim, Ian Wellwood, A. Viona Rundell, Noor Azah Abd Aziz, Jonathan Mant, Gayle E. Woloschak.


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.

Systematic review and meta-ethnography.

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

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

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.

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.

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.

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.

PROSPERO 2015:CRD42015026602

Partial Text

Globally, stroke is the second leading cause of death and the third most important cause of disability burden.[1, 2] Stroke-related disability burden is on the rise with a 12% increase worldwide since 1990. This rise accounts for more than 100 million Disability Adjusted Life Years (DALYs) lost (> 2 million in the USA alone, 0.66 in the UK) and contributes to the large economic burden of stroke due to healthcare utilisation, informal care and the loss of productivity (for example, DALYs of younger stroke survivors (<75 years old) account for 70% of DALYs lost).[1, 3] The cost of stroke is high and estimated at $33 billion (including health care cost, medicines and missed days of work)[4] in the USA, £8.9 billion per annum in the UK[3] and $5 billion in Australia (including healthcare, informal care and the loss of productivity).[5] We identified 3,667 potentially relevant articles. After excluding duplicates, title and abstract screening, 86 full reports were read in full and assessed for eligibility. 51 papers representing 51 unique studies including 496 participants (168 stroke survivors and 328 informal caregivers) were included in the final synthesis (Fig 2). Stroke survivors and their caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. The marginalisation arises because of service passivity and misalignment of information provision with needs, which change with post-stroke recovery. The passivity of services was expressed as lack of continuity of care, including lack of (active) follow-up, limited (in scope and time) and delayed access to community services, as well as inadequate (too little and too general) information about stroke, recovery and healthcare services. We posit that this passivity also has a relational aspect where activating the support from healthcare professionals within the first year after stroke would increase patients’ ability to self-manage their chronic condition. This can be achieved by providing timely and targeted information about stroke, available resources, and by regular follow-ups to foster supporting long-term relationships with healthcare professionals. Active support from health care professionals would be expected to decrease over time as patients and caregivers become more self-reliant and better able to self-manage living with stroke. Primary care and community health care interventions which focus on improving active follow-up and information provision to patients and caregivers especially in the first year after stroke, could help improve patient self-management, increase stroke specific health literacy and thus mitigate the current perceptions of abandonment felt by many stroke survivors and their caregivers.   Source:


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