Quality of Life Among Families of School-Age Children with An Autism Spectrum Disorder In the United States

Background:  Family quality of life (FQoL) has emerged as a distinct conceptual framework, separate from individual or Health-Related Quality of Life. FQoL reflects the manner with which families tend to their basic daily needs and enjoy life together as they engage in activities that are important to them (Park et al., 2003). The FQoL model has been operationalized through 5 subscales including parenting, family interaction, disability-related support, material wellbeing, and emotional wellbeing (Hoffman et al., 2006). This holistic approach elucidates the overall family experience by capturing the internal attributes of family life and the influence of the environment on family wellbeing. Futher, FQoL guides the pursuit of more effective ways to support family wellness. To date, only one small study has examined FQoL in families with a child with ASD (n=18) (Brown, et.al.,2006). While this study demonstrated lower FQoL in this population, compared to families of a child with Down’s Syndrome, further research with a larger, less biased sample is required to validate or repudiate this finding.

Objectives:   To a) examine the impact of raising a child with ASD on FQoL and b) observe the modifying effect of family structure on FQoL

Methods:  Data used for this study were from the 2007 National Survey for Child Health (NSCH) (Blumberg et al., 2009). Analysis was restricted to school-age children ages 6-17 years (N= 64,076). Using the FQoL Survey (Hoffman et al., 2006) as a guide for item selection, an index was created using 29 items from the NSCH, which encompassed 5 subscale scores that were summed to create a total FQoL score. Linear regression models with survey commands and weights were carried out to examine the effect of raising a child with ASD (n = 759) on FQoL compared to children with ADHD (n = 5,039) and the unaffected population. Confounding variables, adjusted in multivariate regression models, included a variety of child, parent, and geographic factors. Beta Coefficients from the linear model were used to calculate effect sizes using Cohen’s d. Subscale and total scores were stratified to examine the effect of family-structure on FQoL.

Results:   Overall, the multivariate analyses indicated raising a child with ASD has a large, negative effect or strain on FQoL when compared to unaffected controls of two parent families and other family types, respectively (d = -1.24, -.94). There was a similar negative, albeit moderate, effect for raising a child with ADHD (d = -.61, -.57) (all p < .01).

Conclusions:  Nationally representative data used in this study highlights the impact of raising a child with a neurodevelopmental disorder on FQoL. More specifically, family mental and physical health, caregiver burden, and disability support were implicated as the areas of greatest need in families with a child with ASD, whereas caregiver burden and family mental and physical health are implicated in families with a child with ADHD. Results substantiate and underscore the urgent need to develop interventions and policies that address multiple areas of family support extending beyond child-specific treatment.