Exploring Grandparenthood in the Context of Grandchild Disability: Intergenerational Perspectives

Abstract

Available evidence indicates that grandparents can play a crucial role in the support of their grandchildren with a disability, their adult children and the entire family unit. Shifts in family relationships and roles, demographics and broader contexts are placing greater importance on the role of grandparents. The lived experience of grandparenting in the context of grandchild disability has received scant attention in research, policy or practice, particularly in the UK, yet advances in neonatal and paediatric care have resulted in more children surviving with disabling conditions. This qualitative study aimed to explore the role of grandparents in the lives of children with a disability from their perspective and that of the parents, and to understand the impact of ageing on the dynamics of intergenerational support. In-depth interviews were conducted with grandparents (n=21) and parents (n=11) of children aged 4-19 years with disabilities including autism spectrum disorder, cerebral palsy, and congenital disorders. Three overarching themes were identified: experiences of diagnosis and family adaptation, maintaining intergenerational harmony, and changes in the dynamics of care with age. Grandparents were a vital source of support, aiding families to adapt and continually adjust to the needs of the grandchild. Grandparents, however, also recounted their own hardships, which included financial challenges, long hours of care, and lack of engagement in third age activities. Capturing both parent and grandparent perspectives demonstrated extensive intergenerational negotiation, and at times conflict, around employment, role boundaries, types of support, and the emotional work in maintaining intergenerational harmony. Intergenerational support shifted and was continually renegotiated across the lifecourse trajectory. As well as giving voice to a previously under-researched group, these findings inform key debates, such as how extending working life policies can impact on families with disabled children.