Grandparenting a child with a disability: An emotional rollercoaster

Abstract

Objectives: As our knowledge about the experiences of grandparents when their grandchild has a disability is extremely limited, the purpose of this research was to explore the emotional journey of Australian grandparents. Method: This qualitative research utilised purposive sampling and semi‐structured in‐depth interviews to explore the experiences of 22 Australian grandparents, whose grandchild had been diagnosed with a disability. Results: Three key themes characterized grandparent's emotional journey: adjusting (the transition from anger to acceptance), the ‘double grief’ (sadness about what might have been for both their child and grandchild) and pride in family (pride in family's ability to adjust to the challenges of the situation). Conclusion: As the first Australian study to explore the experiences of grandparents when their grandchild has a disability, the research provides important new knowledge about the emotional journey for grandparents. Unlike overseas research, Australian grandparents view themselves as being there to support their own children, rather than ‘holding the family together’. The findings will provide current policy debates about the role of grandparents and highlight the importance of support services that help facilitate grandparent's role within their family.

Impact of disability on families: grandparents' perspectives

“…1995; Margetts et al . 2006; Woodbridge et al . 2009), grandparents were extremely involved in the lives of the family whose child has a disability, providing emotional and instrumental support to their child and grandchild.…”

“…The majority were retired (10 were self‐funded retirees and nine receiving government‐funded pensions), with many (16) reporting significant prior experience of working with children with disability in their pre‐retirement occupations as teachers/teachers aides (10), registered nurses (4) and aged/disability support workers (2). At the time of interview in 2007, the 20 grandchildren were all under 17 years of age (ranging from 2 to 14 years, with nine under eight years) and had a wide variety of disability diagnoses – based on the grandparent report, these included cerebral palsy ( n = 2), Down syndrome ( n = 3), autism/Asperger's syndrome ( n = 4) and a range of other low‐incidence disabilities (see Woodbridge et al . 2009 for specific details).…”

“…2005). Previous analysis of this data focused on the emotional experience of being a grandparent of a grandchild with a disability (Woodbridge et al . 2009); this article focused on the issues associated with family quality of life and responses to questions exploring their role in the family, relationships with and impact on family members and expectations for the future.…”

“…Correspondence: Dr Evonne Miller, School of Design, Queensland University of Technology, GPO Box 2434, Brisbane, Qld 4001, Australia (e-mail: e.miller@qut.edu.au). Margetts et al 2006;Woodbridge et al 2009). In particular, grandparents typically play a central role in family life -supporting their adult children, caring for their grandchildren and maintaining extended family relationships.…”

The Experience of Stress and Personal Growth Among Grandparents of Children With and Without Intellectual Disability

“…Furthermore, grandparents have reported that after their initial experience of anger and sadness, they made sense of and accepted the diagnosis and even took pride in their family's positive coping and adjustment with the unanticipated challenges (Woodbridge, Buys, & Miller, 2009). Nevertheless, the scarce literature addressing the experiences of these grandparents primarily describes their feelings and experiences in negative terms, overlooking the positive outcomes (see, e.g., Scherman et al, 1995) such as the potential for personal growth.…”