A meta-ethnographic synthesis of lived experience of spouse caregivers in chronic illness

Abstract

Social workers routinely work with chronically ill, providing support for long term care. Several qualitative studies describe the experiences of the person and carer in a chronic illness. There is a limited synthesis of these experiences to aid practice. The current review aims to present a synthesis of the experiences of the spouses of chronically ill persons reported in the literature. A comprehensive search of electronic databases was done, and the studies were selected using PRISMA guidelines. The selected studies were subjected to quality check using CASP guidelines and a score was assigned to each of those studies. Later, qualitative synthesis of the results of the selected studies was done using the principles of meta-ethnography. 2407 studies published between 1999–2019 were identified and 22 studies were included in the final synthesis. The number of participants in the studies reviewed was 309, with more representation of females. The reciprocal synthesis of these studies identified loss, change, caregiving and exhaustion, barriers in providing care, illness experience, coping, socio-cultural norms and support as common themes from the accounts of the participants. ‘Continuity of change’ was identified as the core concept in the lived experience of the spouses of chronically ill persons. ‘Illness, loss and Lived experience’ is proposed as a model of the lived experience of the spouses. Through this synthesis, the factors influencing the lived experience of spouse caregivers is understood, which can help social work professionals in the health sector in planning interventions for the spouses of chronically ill persons.