It’s a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder
We know little about custodial grandparents of children with autism spectrum disorder (ASD) who offer a vital social safety net. 117 custodial grandparents of children with ASD from 37 states completed an online survey with open-ended questions about their “greatest challenges and joys” as grandparent. Grounded theory analysis revealed four categories of experience (Issues with Adult Children, Caregiving Burden, Coping, & Wisdom) explained by 15 themes. Grandparents’ stressors encompassed custody issues, ASD problem behaviors like tantrums and eloping, insufficient ASD services, financial burden, 24/7 caregiving demands, social isolation, and fears for the future. Grandparents’ coping included celebrations of progress, unconditional love, faith, and a positive focus. Grandparents’ wisdom included patience and insight. Recommendations to support these caregivers are provided.
KeywordsCustodial grandparents Caregiving Autism spectrum disorder Kin networks Grandchildren Disabilities Coping Tantrums Respite Wisdom Strength-based approach
The authors would like to acknowledge the grandparents who participated in this research, and Autism Speaks and The Association for the Advancement of Retired Persons (AARP) for their assistance with recruitment.
JLH performed qualitative and quantitative analysis of the data, and drafted and helped to revise the manuscript. CMA conceived and designed the study, coordinated data acquisition, performed qualitative analyses, and helped to draft and revise the manuscript. Both authors read and approved the final manuscript.
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
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