Dis/integrated care: family caregivers and in-hospital respite care


Jean Gilmour, School of Health Sciences, Massey University at Wellington, PO Box 756, Wellington, New Zealand. E-mail: j.a.gilmour@massey.ac.nz


Aim.  The aim of this study was to explore family caregivers' experiences of in-hospital respite care for people with dementia and the factors that influenced their perceptions of the service.

Background.  The provision of respite care is based on the assumption that temporary relief from caregiving will relieve caregiver stress and may possibly extend the duration of home care. Research evidence suggests that this is a simplistic perspective which fails to account for families' concerns about the quality of institutional care and the impact of relocation on the person being cared for.

Design.  Nine family caregivers, using four different hospitals sites were interviewed during a period of 3 years from 1994 to 1997. The research texts were analysed using a critical discourse analysis approach drawing on the work of Foucault.

Findings.  Family caregiver texts were distinguished by difference rather than by homogeneity. Caregivers occupied a range of positions in terms of their ability to take advantage of the respite time intermittent care offered. My reading of these texts has highlighted the aspects of nurse–family relationships that ameliorated, or alternately exacerbated, the tensions felt by caregivers, as they were torn between the necessity to have a break and their anxieties about the impact of in-hospital respite care on the person with dementia.

Conclusion.  Nurses' practices in this study were a critical element in facilitating, or alternately constraining, family caregivers' ability to relinquish care and to take full advantage of the respite time. The research findings highlight the need for nurses and other formal caregivers to locate themselves in a secondary and supporting caregiving role, to acknowledge the family caregivers as the primary caregiver, and use family caregivers in-depth and intimate knowledge of the needs of their relative to inform care within the institutional setting.