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

Abstract

ObjectiveTo 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.DesignSystematic review and meta-ethnography.Data sourcesMedline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).Eligibility criteriaPrimary qualitative studies focused on adult community-dwelling stroke survivors’ and/or informal caregivers’ experiences of primary care and/or community healthcare services.Data synthesisA 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.Results51 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.LimitationsPotential 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.ConclusionsStroke 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 numberPROSPERO 2015:CRD42015026602

Health professionals’ perspectives on the discharge process and continuity of care for stroke survivors discharged home in regional Australia: A qualitative, descriptive study

“…Disruptions in the continuity of care, such as delays in service provision, missed medications, missed appointments, and inadequate support after discharge, have been reported in some previous studies (Ghazzawi et al, 2016;Koh, Barr, & George, 2014;Naylor & Keating, 2008;Pindus et al, 2018), but factors that contribute to these disruptions are not well understood. The impact of discontinuity on service delivery can result in delayed recovery and readmission to hospital (Naylor & Keating, 2008); carers might feel unsupported and that it is necessary for them to take responsibility to compensate for inadequacies in the health system (Hvalvik & Reierson, 2015).…”

“…Health professionals involved in preparing patients for discharge have been described as well-intentioned and committed to planning for this transition. However, they can encounter organizational barriers, such as pressure to discharge patients, difficulty accessing services (Pindus et al, 2018), and incomplete discharge documentation, and carer stress that prevents the success of these plans (Kable, Chenoweth, Pond, & Hullick, 2015).…”

“…They adopt responsibility for managing and coordinating care after the stroke patient is discharged, and frequently feel inadequately prepared to undertake this role (Aziz, Pindus, Mullis, Walter, & Mant, 2016). They need to be included in planning and training for discharge (Pindus et al, 2018), and require resources to initiate services, manage finances, adapt to changes in their relationship with the stroke survivor, and develop coping strategies to adapt to this sudden change in their lives (Luker et al, 2017). In addition, carers need information about stroke associations, support groups, home services, and available community facilities (Pindus et al, 2018).…”

“…The impact of discontinuity on service delivery can result in delayed recovery and readmission to hospital (Naylor & Keating, 2008); carers might feel unsupported and that it is necessary for them to take responsibility to compensate for inadequacies in the health system (Hvalvik & Reierson, 2015). Previous studies about discontinuity in transitional care have been focused on older people (Cheen et al, 2017;Grealish et al, 2017;Hvalvik & Reierson, 2015) and people with dementia (Kable et al, 2015) or diminished cognition (Groene et al, 2012), carers of stroke survivors (King et al, 2010;Luker et al, 2017;Pindus et al, 2018), and general hospital admissions (Ziaeian, Araujo, Van Ness, & Horwitz, 2012). These studies have been conducted in Australia, Singapore, Norway, the USA, and Spain (participating in the HANDOVER project) (Groene et al, 2012), and results might be relevant to other similar health-care systems.…”

Family caregivers: Important but often poorly understood

“…Many stereotypes, misconceptions and monocultural viewpoints persist in the understanding of family caregivers (Deek et al., ). Data also demonstrate that caregiving can be an isolating and marginalizing experience (Pindus et al., ). The increasing importance of family caregivers to healthcare outcomes requires us to intensify our focus on this pivotal role in policy, practice, education and research.…”