Support Needs, Experiences with Services and Characteristics of Families of Children with Autism Spectrum Disorders.

Background:

Families caring for a child with autism spectrum disorders (ASD) experience many challenges and stressors that can have great impact on family members and lead to burden on the system. The care families provide can only be maintained if families receive sufficient support. Various support forms are available and are being used by families. However not all support is perceived as helpful and unmet support needs remain.

Objectives:

Our objective was to determine family support needs and prior experiences with services. We aimed to identify support characteristics which parents perceived as helpful. Furthermore we examined the association between support needs, satisfaction with services and family and child characteristics.

Methods:

Questionnaires (n=76) were used to question families (n=76) of a child with ASD living at home (age 12-18) about support needs and experiences with services. Then 30 semi-structured interviews were conducted to collect more detailed and extensive information about these subjects. Transcriptions of the interviews were analyzed using open coding. After this initial coding, codes were combined into concepts.

Results:

A broad variety of support needs were identified. Outpatient care, respite care, guidance on increasing independence, guidance on behavior modification, information point on available services and more community awareness of ASD were mentioned by the majority of families. All families reported unmet needs.

Support characteristics which parents perceived as helpful were flexible outpatient care, tailored care, guidance in finding and accessing services, counseling in small groups, expertise on ASD and care provided by a known, trusted counselor.

Family and child characteristics influencing support needs were acceptance of ASD, parents self-assurance about approach, parents attitude towards help, aggression, social support and caregiver burden. These characteristics play different roles in families and influence both the type of support needs and the perception of the support being helpful.

Conclusions:

Although many services are available, families face unmet support needs. Our findings indicate that several factors determine if a service is helpful for a family. Being aware of those factors and the role they play in families is essential in providing tailored care and meeting family needs.