Perceived Impact, Needs, and Resources of Grandparents of Children and Adolescents on the Autism Spectrum: A Qualitative Study.

This Spanish study interviewed 17 grandparents of autistic children to understand their experiences. Grandparents reported both positive growth and significant stress from wanting to help but not knowing how. They needed more information about autism and help managing challenging behaviors. Most relied on their faith and informal support from others. The researchers suggest including grandparents in autism support programs.

This qualitative study examined the experiences of 17 grandparents of children and adolescents on the autism spectrum in Spain, exploring the impact, needs, and resources related to having an autistic grandchild. Through semi-structured interviews and thematic analysis, researchers identified three main impact areas: personal growth, frustration from wanting to help but being unable to, and multi-level suffering (for themselves, their adult children, and grandchildren). Grandparents expressed needs across four contexts: personal needs, nuclear family needs, grandchild's autism-related needs, and broader societal needs. The most common needs were for information and managing behavioral difficulties.

Religious beliefs and informal support seeking were the most frequently used coping resources.

Results suggest grandparents should be included in autism intervention programs and provided with autism-specific information and behavioral management strategies. Addressing parent-grandparent relationship quality may improve family support systems. Cultural and religious factors should be considered in family-centered approaches.

Small sample size of 17 grandparents limits generalizability. Study conducted only in Spanish context may not reflect experiences in other cultures. Qualitative design provides depth but cannot establish broader prevalence of findings. No comparison group included.

Grandparents play different roles in families of children and adolescents on the autism spectrum. They are frequently engaged in caregiving tasks with the person on the autism spectrum, providing emotional and instrumental support to the family. However, despite their frequent involvement and the importance of their role in the family, there are few studies that address the experiences of these grandparents, particularly in the Spanish and southern Europe context. This study explores the impact and needs of having a grandchild on the autism spectrum and the resources that grandparents have and use to face the difficulties that arise.

A semi-structured interview was carried out with 17 grandparents of children and adolescents on the autism spectrum. We conducted a coding reliability thematic analysis of the impact and used a quantitative content analysis of grandparents' needs and resources. Results indicated three main aspects related to the impact: personal growth, wanting to help and not being able to, and suffering at three levels: for themselves, their sons and daughters, and grandchildren. Grandparents perceived needs in four contexts: their own needs, the needs of the nuclear family, the needs of the person on the autism spectrum, and the needs of society.

The most frequent needs were informational and management of behavioral difficulties. In the resources, the most frequently used strategies were religious beliefs and informal support seeking. It is essential to address the quality of parents-grandparents' relationships, and include grandparents in intervention programmes, as a way of addressing grandparents' needs.