Families in a state of flux: the experience of grandparents in autism spectrum disorder

Child Care Health Dev. 2006 Sep;32(5):565-74. doi: 10.1111/j.1365-2214.2006.00671.x.

Abstract

Background: The experience of being a grandparent of a grandchild with autism spectrum disorder (ASD) is a previously under-researched area. This study sets out to examine the grandparents' own perspective in an exploratory way using a qualitative approach to answer the question, 'What is the experience like?'

Method: A qualitative research project, using a purposive sampling technique and semi-structured interviews to examine the experiences of six grandparents of children with ASD diagnosed by a specialist team in a second opinion Tier 4 Child and Adolescent Mental Health Service.

Results: The experiences of the grandparents were characterized by three Key Themes which emerged from the interviews: (1) The Parental Bond (protective bonding towards grandchild and adult child); (2) Striving for Answers (searching for meaning); (3) Keeping Intact (holding the family together).

Conclusion: The study suggests some interesting insights and confirms the need for more attention to this area. A key question raised by the study is how a child-focused multidisciplinary team can embrace its role in delivering a family-centred service. The clinical implications of this project have led to a change of practice in the specialist team. Further research would be appropriate to investigate the therapeutic effectiveness and cost effectiveness of involving grandparents as part of the assessment process.

MeSH terms

  • Adolescent
  • Adult
  • Adult Children / psychology
  • Attitude to Health
  • Autistic Disorder / psychology*
  • Child
  • Child Development
  • Child Rearing / psychology
  • Family Relations*
  • Humans
  • Intergenerational Relations
  • Interviews as Topic
  • Parent-Child Relations
  • Parenting / psychology
  • Parents
  • Role
  • Social Responsibility
  • Social Support