Kontakt X:X | DOI: 10.32725/kont.2026.028

Navigating lifelong care: experiences of mothers caring for adult offspring with autism spectrum disorderSocial Sciences in Health - Original article

Miriam Slaná* ORCID..., Katarína Molnárová Letovancová ORCID...
Trnava University in Trnava, Faculty of Health Care and Social Work, Department of Social Work, Trnava, Slovak Republic

Background: Autism Spectrum Disorder (ASD) is a lifelong neurodevelopmental condition that often requires intensive parental caregiving. While research has focused on children with ASD, experiences of parents caring for adult offspring remain underexplored.

Aim: This study aimed to explore parents' experiences of caring for their adult child with ASD.

Methods: A qualitative study was conducted with ten mothers using in-depth semi-structured interviews. Data were analyzed through reflexive thematic analysis to identify key patterns and themes in participants' experiences.

Results: Five main themes emerged: Non-Transferable Caregiving, Reduction of the Supportive Social Network, Neglect of Self-Care, Fear for the Child's Future, and Persistent Need for Advocacy. Mothers described intensive, enduring caregiving roles, social isolation, limited self-care, and significant concerns about future support and services. Advocacy served as a coping mechanism and a means to influence systemic support.

Conclusion: Mothers of adult children with ASD face substantial, ongoing caregiving burdens. Improved formal support, respite services, and professional preparedness are essential to enhance both caregiver well-being and the quality of life of adults with ASD.

Keywords: Adult care; Autism Spectrum Disorder; Caregiving burden; Mothers; Qualitative study; Thematic analysis
Conflicts of interest:

The research received approval No. EK-5/5K/2025 from the ethics committee of the Faculty of Health Care and Social Work, Trnava University. The authors have no conflict of interest to declare.

Received: December 8, 2025; Revised: February 24, 2026; Accepted: April 10, 2026; Prepublished online: April 22, 2026 

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