What should I do now? Exploring family roles and relationships when a child has a disability. The grandparent's perspective.

Abstract

Through listening to the grandparents' perspective, this study sought to identify whether the roles and relationships grandparents had with their grandchild with a disability were somehow different to those they had with their other grandchildren and their wider family. METHOD: Interviews were conducted with a total of 22 grandmothers and grandfathers who had a least one child with a disability, aged under the age of 17 years. The children's disabilities included De Georges' Syndrome, spina bifda, autism and cerebral palsy. RESULTS: The expectations, perceptions and experiences of the grandparents were openly explored. These provided important insight into the challenges which had arisen for them and for their families, These challenges changed the nature of their identity and roles as a grandparent, and in some cases their role within the wider family and community. Grandparents used their prior knowledge and coping skills to enhance the quality of life of their grandchild and provide unconditional love and support for their own child. CONCLUSIONS: Grandparenting a child with a disability has been described as a roller coaster ride of emotions. However despite this journey, this paper will identify the important contribution grandparents make to the lives of their grandchildren including those with disabilities.