Nurturing Grandchildren With Down Syndrome: A Qualitative Study on Grandparents' Needs Using Digital Tools^†

Area of Science:

• Gerontology
• Disability Studies
• Family Studies

Background:

• Grandparents of children with disabilities are an underrepresented research group.
• This study focuses on the experiences of grandparents with grandchildren diagnosed with Down syndrome.

Purpose of the Study:

• To qualitatively explore the situations and needs of grandparents raising grandchildren with Down syndrome.
• To understand the personal perspectives and lived experiences of this demographic.

Main Methods:

• Qualitative phenomenological study design.
• Individual interviews using open-ended questions conducted via phone/video calls.
• Manual analysis of participant speech to identify meta-categories and categories.

Main Results:

• Participants reported a significant shift from negative emotions post-diagnosis to current positive experiences.
• Grandparents perceive themselves as essential sources of informal, instrumental, practical, social, emotional, and economic support.
• Identified needs include greater access to information, training, and resources, alongside calls for increased government support and opportunities for their grandchildren.

Conclusions:

• Grandparents play a vital role in supporting grandchildren with Down syndrome and their families.
• There is a clear need for enhanced information, training, and advocacy to address the challenges faced by these families.
• Future research should continue to explore the unique needs and contributions of grandparents in disability support systems.