This is the child I know, this is the child I love.’ Older Parents of Adult Children with Learning Disabilities: Perspectives on Caregiving and Quality of Life

Abstract

Objectives: This study examined the experiences of older parents who provide long-term care for their adult children with learning disabilities and how they conceptualise their quality of life. Method: Data were collected using semi-structured interviews during the period 2009 to 2012 with 27 older parent carers from four London boroughs and were analysed using framework technique. Findings: Findings indicate benefits as well as challenges. Most participants appraised their quality of life positively, despite the challenges they had to negotiate on a daily basis. They reported rewards and benefits from caregiving, more so in later life, such as: a connected family from shared caregiving; having a sense of belonging; purposeful living; a reciprocal relationship with their adult children; and personal transformations from providing care which improved their quality of life. The challenges that participants regularly encountered were: the added stress of the government’s Personalisation Agenda of caring services (particularly through direct payments); struggles for access to services; multiple losses (sleep, career, identity and friends); worry about future care; fear of abuse when carers are unable to continue in their role; unhelpful attitudes of health and social care professionals; and a lack of empathy from friends as well as the public towards people with learning disabilities. Conclusion: The findings indicate that caregiving and quality of life are inextricably linked. The difficulties that parent carers experienced were mainly associated with socio-structural barriers, rather than their children’s disabilities. Importantly, the findings inform the practice of social workers and others who support this unique group of carers by providing new insights into how caring impacts on quality of life and how best these parents’ needs can be met. This study makes a specific contribution to understanding the phenomenological realities of older carers and extends current conceptualisations of quality of life among older people.