Measuring parental stress, illness perceptions, coping and quality of life in families of children newly diagnosed with autism spectrum disorder

Abstract

Background A variety of psychosocial factors have been shown to affect the quality of life of families (FQoL). Aim This study aimed to assess the impact of mother's demographic characteristics, parental stress, illness perceptions about autism spectrum disorder (ASD), coping strategies, ASD severity and time since diagnosis on FQoL during the initial period following diagnosis (≤6 months). Method Fifty-three mothers of children newly diagnosed with ASD completed the Beach Center Family Quality of Life Scale, the Autism Parenting Stress Index, the Brief Illness Perception Questionnaire and the Brief Coping Orientation to Problems Experienced Inventory. A descriptive analysis was conducted on the demographic characteristics of the family. Eta coefficients and Pearson's analysis were used to determine the associations between the variables and the FQoL dimensions. Hierarchical regression was used to determine whether variables explained a statistically significant family quality of life variance. Results Pearson's analysis and eta coefficients indicated several correlations. Hierarchical regression analysis showed that higher parental stress related to core autism symptoms was associated with poorer FQoL (95% CI −0.08 to −0.02, P = 0.001), and higher perceived treatment control was associated with better FQoL (95% CI 0.04–0.16, P = 0.001). In addition, stronger perceived personal control was associated with higher physical/material well-being (95% CI 0.01–0.16, P = 0.022) and higher disability-related support (95% CI 0.30–0.61, P = 0.001). Higher family monthly income was associated with better FQoL (95% CI 0.08–0.027, P = 0.000), whereas marital status (divorced mother) was correlated with poorer FQoL (95% CI −0.68 to −0.16, P = 0.002). Conclusions Interventions should emphasise managing the disorder's characteristics and implementing psychoeducational and supportive programmes for parents, immediately after the diagnosis, to enhance FQoL.