The Development of a Family Support Package for Parents Following a Child’s Diagnosis of Autism Spectrum Disorder: What Do Parents Want?

Background:  Children with ASD are being diagnosed more than ever before. Unfortunately, the diagnostic process is distressing and difficult to understand for families.

Objectives:  The objective in the proposed project is to develop and test the efficacy of a Family Support Package (FSP) to support parents soon after the diagnostic process. The specific aims include: 1) the development of a package that comprises parental education/information in the form of a post-diagnostic kit, and a Family Clinic (FC); 2) to investigate whether access to the FC improves parental well-being.

Methods:  Focus groups were conducted with parents to inform the development of the FSP. This paper will present the qualitative results from the focus groups and the framework of the FSP.

Results:  Mothers and fathers who received their child’s diagnosis in the last 24 months were invited from the participant registry to the current study. Consenting participants attended a single focus group of approximately 60 to 90 minutes with four to six other parents. Audio recordings were transcribed with qualitative analyses conducted to draw key themes.

Conclusions:  Parents of children diagnosed with ASD at a young age are often overwhelmed and uncertain about what to do at this critical time. Themes emerged from the focus groups that identified what parents really want and what is most helpful to them soon after the diagnosis. A central contact point was highlighted, as well as a step-by-step guide about who to contact and where to find more information. Parents also emphasised that education and awareness of ASD is key to their understanding and acceptance of the diagnosis.