Impact of disability on families: grandparents' perspectives

Abstract

Background: Caring for a child with a disability can be a unique and challenging experience, with families often relying on informal networks for support. Often, grandparents are key support resources, yet little is known about their roles and experiences. Reporting on data collected in a larger Australaian study, this article explores grandparents' experiences of caring for a child with a disability and the impact on their family relationships and quality of life. Method: A qualitativbe purposive sampling design was utilised; semi structured interviews were conducted with 22 grandparents (17 women, 5 men) of children with disability. Grandparents ranged in aged from 55 to 75 years old and lived within 90 min drive of Brisbane, Australia. Interviews were transcribed and responses analysed using a thematic approach, identifying categories, themes and patterns. Findings: Four key themes characterised grandparents' views about their role in the family: holding own emotions. (decision to be positive), self sacrifice (decision to put family needs first), maintaining family relationships (being the go between) and quality of life for family in the future (concerns about the future.). Conclusions: Grandparentds are central to family functioning and quality of life, but this contribution comes with a significant cost to their own personal well being. Implications for policy, practice and research are discussed, particularly grandparents' fear that their family could not cope without their support.