The Fathers' Experiences of Healthcare when Caring for Children with Autism Spectrum Disorder

Background: Autism Spectrum Disorder (ASD) is a lifelong neurodevelopmental disorder, generally diagnosed in childhood. ASD ranges in severity but may be associated with co-morbidities thus increasing the caring challenges for parents. Previous studies exploring the experiences of parents caring for a child with ASD have mainly involved mothers or focused on the parenting context of fathers. This thesis, therefore, aimed to explore the experiences of fathers caring for children with ASD in the context of accessing healthcare.

Methods: To inform this thesis, a scoping review was conducted on relevant peer-reviewed empirical studies published between January 2013 and February 2024. A qualitative research study was also conducted with eight fathers caring for children with moderate to severe ASD, using semi-structured interviews. The interview transcripts were analysed using a hybrid inductive/deductive thematic analysis approach.

Results: The scoping review selected 12 eligible papers. Three main themes were identified: 1) Fathers’ experiences of healthcare services for their children with ASD, 2) Impact on fathers’ health and wellbeing, and 3) Fathers’ perceived support needs. From the qualitative study, similar themes emerged from the interviews: a) The experiences of fathers with healthcare services and healthcare professionals (HCPs), b) Coping with a child’s ASD as a father, c) The emotional impact on father and family, and d) The financial impact on father and family.

Conclusion: Fathers want to be recognised and valued as carers for their child with ASD by HCPs. Future research in healthcare systems needs to explore strategies to support relationship-building between fathers and the HCPs, improve healthcare literacy for culturally and linguistically diverse communities, and be generally more father-inclusive in its policies and practices. Better integration between healthcare, disability and educational services was another important finding that needs further exploration.