Quality of Life for Teens with ASD: Application of a Modified ICF Model

Background: Quality of life is a critical outcome for children with developmental disorders. Heath-related quality of life (HRQoL) for children ages 2 to12 with an Autism Spectrum Disorder (ASD) has been examined recently (Kuhlthau et al., 2010), and extensive work has examined the HRQoL of parents of children with ASD (e.g., Allick et al., 2006; Mugno et al., 2007). No research in ASD has examined parent’s perceptions of their teen’s HRQoL within a modified version of the International Classification of Functioning, Health and Disability (ICF)(McDougall et al., 2010). This framework offers a unique perspective to guide consideration of HRQoL. Environmental factors such as access to services. activity limitations and opportunities for participation, as well as personal factors have an impact on QoL.  Parents’ perspectives on the influence of these factors can provide important information about HRQoL for persons with ASD.

Objectives:   

1. Examine mother-reported HRQoL for teens
2. Use the modified ICF to examine factors influencing HRQoL

 Methods: Participants were 20 mothers of teens (Mean age= 15 years) with an ASD. The parent report form of the Kidscreen-52 (Ravens-Sieberer et al., 2006) was used to examine perceptions of their teens’ HRQoL. In semistructured telephone interviews (30 to 60 min. long), mothers addressed services and supports received and factors that had the biggest impact on the teen’s and family’s quality of life. Interviews were transcribed verbatim, coded for content analysis and entered into a data management program (NVivo9).

Results: Mean HRQoL scores as reported by mothers were within one standard deviation of the normative mean for all subscales except for Moods/Emotions, Social Support/Peers, and Social Acceptance. The family, including siblings, was an essential part of the environment. Parents’ ability to advocate for and identify supports linked to functional impairments provided access to government programs that funded community and school supports. Most teens received support during their education. Several mothers felt this had a great impact on HRQoL although some teens wanted minimal support so they could be normal. Support for participation in community outings or staying with respite families played a positive role in both teens’ and families’ HRQoL. Mothers also mentioned the importance of other parents or people in the community that helped with decision making, finding information, and getting support. Living in a supportive community that was accepting of their child was important. Developmental issues as teens transition to adulthood were evident in mothers’ concerns about their teen’s future. Some teens had work or life style goals that mothers identified as unrealistic while others had goals that would require significant support to reach.

Conclusions:  These results differ from research with parents of younger children with ASD which indicated a significantly lower HRQoL based on proxy report. Interpretation of these results, using qualitative data from mothers, suggests that teens’ and families’ QoL results from a complex interplay between the teen’s impairments and personal factors, activity limitations, participation, and environmental factors. Consideration for future needs within a developmental framework and parent and teen HRQoL need to be addressed.