Primary caregivers' experiences of caring for schizophrenia in the community : a grounded theory study

Abstract

This study was designed to describe the lived experiences of primary care givers of persons with schizophrenia in the community, and to construct a mechanism to explain caregiver burden. A grounded theory design based on the philosophical foundations of symbolic interactionism was employed. Saturation of data was achieved after a convenience sample of seven primary caregivers, accessed through a local association offering support to relatives of the mentally ill, were interviewed. Consonant with the grounded theory design, the literature was not extensively reviewed prior to data collection and analysis, to ensure that any resulting theoretical constructions evolved from the data and were not influenced by the literature. Semi-structured interviews were audio-taped, transcribed and analysed using the more structured approach recommended by Strauss and Corbin (1998). Open, axial and selective coding of the data resulted in the formulation of a set of theoretical relationships proposing how primary caregivers of persons with schizophrenia respond to caregiver burden. This theory is presented in narrative form and also by means of a visual model. The main analytic message of this study is that primary caregivers respond to caregiver burden by becoming engaged in an educational, lifelong process which involves different stages, and movement through stages is affected by a series of prevailing conditions. A more extensive literature review conducted after the theoretical propositions were formulated identified that although previous research has focused primarily on describing and measuring caregiver burden, the vision of the care giving experience as an educational, lifelong process had already been perceived. Locally and internationally, future research conducted among primary caregivers of persons with schizophrenia involving samples of care givers who are not affiliated with an advocacy or support group is needed. Moreover, the conspicuous lack of prospective, longitudinal studies in the literature on psychiatric care giving needs to be addressed. In practice, efforts should be made by mental health professionals to deliver education through informal contacts with primary caregivers, and to refer caregivers to formal family education programmes. An educational response to care giver burden reaches far beyond the educational needs of caregivers. The formal provision of education and desensitisation about schizophrenia needs to be extended to health professionals, employment agencies, teachers, police officers and society at large. Moreover, there is an unmet need for provision of several mental health care services in particular respite care.