Going it alone: family carers' non-use of services

Cavaye, Joyce and Watts, Jacqueline H. (2018). Going it alone: family carers' non-use of services. In: 17th biennal congress of the ESHMS: Old tensions, emerging paradoxes in health: rights, knowledge, and trust, 6-8 Jun 2018, Lisbon, Portugal.

Abstract

Caregiving is a dynamic process that has been conceptualised as an unplanned and unexpected career. Adopting a temporal perspective of caregiving, ‘Going it alone’ is the first stage in this unexpected career. It is a period during which caregivers assume responsibility for the care of a loved one and provide care with no support from service providers. This initial stage is also one in which caregivers are reluctant to accept support from formal service providers even when the service is free at the point of use. In Scotland, carers are perceived as partners in the provision of care and there are several forms of services that have support of family carers as their primary objective. The provision of support services has been found to reduce the burden of caregiving and prevent the breakdown of care. Simply providing services however, does not ensure utilisation. The reasons for the low uptake of services are unclear with the literature suggesting that service use is determined by ‘need’. Drawing on a qualitative longitudinal study that explored the experiences of carers of older people, this paper explores carers’ reasons for non-use of services. Data was gathered through in-depth unstructured interviews and analysed according to the principles and processes of grounded theory. Findings highlight the problematic and invisible nature of power in carers’ relationships with service providers. Caregivers’ perceive services to be authoritarian and intrusive and reasons for non-use are related to issues of power and control. Thus, need per se, did not necessarily equate with the actual use of services. The locus of caregiving was also a determinant of service use. The paper argues that despite changes to policy and practice, caregivers will continue to refuse to accept support services until the authoritarian and intrusive nature of assessment and provision are amended.

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