Quality of Life of Parents of Individuals with ASD and Complacence with Services: A Study on a Large-n Representative Sample from Hungary

Background: Parents of individuals with ASD were shown to have a lower overall level of quality of life (QoL) and to experience themselves as less coherent agents than parents of typically developing individuals and of individuals with other forms of atypical development (Eapen & Guan, 2016). Positive relationships were found between these (and other related) parental indicators and the quality of the ASD-specific services received by the child with ASD (Lai & Oei, 2014; Siman-Tov, Kaniel, 2011, Frantzen et al., 2016). A pilot study from a Hungarian sample brought similar results (Gyori et al., 2016).

Objectives: The main objective of the study from which results are reported was to explore the relationship between quality of educational services received by individuals with ASD and the QoL of their families. Objectives of the present analysis were to compare QoL indicators in parents of individuals with ASD to those in parents of neurotypical individuals, and explore their relationships to indicators of autism-related services received.

Methods: Data were analyzed from a group of parents of individuals with ASD (n = 262, 237 female, 25 male; mean age 43 years, SD 7.8, providing data on 222 male and 35 female individuals with ASD, mean age 12 years, SD 7.3, range 3 – 47 years) and from a group of parents of neurotypical individuals (n = 126, 115 female, 11 male; mean age 43 years, SD 8.5, providing data on 64 male and 62 female offsprings; mean age 14 years, SD 8.5, range 3-48 years). There is no significant difference between parental groups in level of education and in type of residential settlement. Data were collected by an on-line questionnaire battery, composed of, among other tools, the WHO-QOL BREF; the Quality of Life in Autism Questionnaire (QoLA; Eapen et al, 2014); the Sense of Coherence Questionnaire; the Parenting Sense of Competence Scale; and items on educational and other services received. For respondents without on-line access or relevant competence, an assisted paper-and-pencil data collecting method was implemented.

Results: In line with findings from other countries, we found significantly lower level of overall QoL in the ASD parent group, both in WHO-QoL BREF total score (F=13.657, p<0.001) and in QoLA total score (F=4.121 p<0.0001), in their domain scores and in parental sense of competence and sense of coherence indicators. No significant relationships were found between parental QoL levels and the amount of autism-specific psycho-educational interventions received by the child, but in a subgroup of parents with a child with ASD between 3 and 18 years, there emerged weak but significant positive relationships between level of parental complacence with autism-specific educational services received, and QoL indicators (both WHO-QOL BREF and QoLA).

Conclusions: Results, coming from the first large-n representative study on the issue in Hungary, are overall in line with previous findings from other countries. As a novel aspect, they point to the potential importance of parental perception of quality and amount of autism-specific services received by the child.