Association between adherence to behavioral intervention and capability well-being among parents of autistic children: a cross-sectional study from China

Abstract

Background High adherence to behavioral interventions among parents of autistic children contribute to improvement in children’s behaviors and parental outcomes. However, most of previous studies focused on the effects of intervention adherence on health-related well-being among parents, which is inadequate to capture the multi-dimensional parental burden of caring for autistic children. The aim of this study is to assess the association between parents’ adherence to behavioral intervention and their capability well-being. Methods A cross-sectional study was conducted among caregivers of autistic children aged 1–17 years with a confirmed diagnosis in China. A total of 213 parents of autistic children who were currently receiving behavioral intervention were considered in this study. Parental adherence to behavioral intervention was evaluated by the 5-item General Adherence subscale of the Medical Outcome Study. Capability well-being was assessed using the Investigating Choice Experiments Capability Measures for Adults (ICECAP-A), including the domains of stability, attachment, autonomy, achievement, and enjoyment. The index scores for each domain were computed based on the preference-based value set in the United Kingdom, ranging from 0 to 1. Multivariate linear regression analyses were conducted to assess the relationship between intervention adherence and parental well-being. Intervention adherence as well as the variables with p < 0.1 in the univariate analyses were included in multivariate linear regression analyses. Results The mean overall score of ICECAP-A was 0.681 (0.205). In the univariate analyses, intervention adherence was positively associated with stability, autonomy, achievement, and enjoyment (p < 0.05), while the relationship between intervention adherence and attachment was not significant (p = 0.07). After controlling for the confounders in the multivariate linear regression analyses, intervention adherence was positively associated with achievement (β = 0.0004) and enjoyment (β = 0.0004). Conclusions The overall capability well-being among parents of autistic children was worse than that of the general population and caregivers of adult patients with chronic diseases. Adherence to behavioral interventions was positively associated with parental well-being in terms of achievement and enjoyment. Health professionals should involve parents in behavioral interventions and encourage them to implement therapeutic strategies on a routine basis. Customized interventions are warranted to improve capability well-being targeting at vulnerable groups.