Mixed-Methods Approach to Understand Health-Related Quality of Life in Parents of Youth with ASD

Background: If we want to improve the lives of children with ASD we have to consider the health and overall well-being of parents and caregivers. Previous research has clearly shown that parents of children with ASD experience a higher level of stress (Eisenhower et al., 2005) and report increased psychopathology, including anxiety and depression, when compared to parents of normally developing children. The health of caregivers is irrevocably linked to a number of outcomes for the recipient of care including the effectiveness of child-focused interventions.

Objectives: This study sought out to identify psychological factors that predict health related quality of life (HRQOL, WHOQOL-BREF) in parents of youth with ASD as well as give voice to the daily lived experience of these individuals by using a mixed-methods approach. HRQOL captures a meaningful snapshot of the experience of a parent by integrating multiple dimensions of well-being including physical and psychological health along with the subjective experience of health reported by a parent.

Methods: A mixed-methods approach was used beginning with a quantitative survey. The survey was disseminated online to parents of youth who were part of research registry through UNC Chapel Hill. In order to identify variables that significantly predict HRQOL, a hierarchical regression was conducted. Independent variables hypothesized to predict HRQOL included the following: (1) perceived burden, (2) perceived positive aspects of caregiving, (3) coping strategies (adaptive, maladaptive, help-seeking, and avoidant), and (4) social support (belonging, tangible, and appraisal). For the qualitative component, 8 participants were interviewed. Qualitative interview questions were created to examine the relationship parents see between HRQOL and their own daily experiences; explore barriers and facilitators towards seeking out services, resources, or support; and elicit parental responses to potential mechanisms of disseminating support and various types of supportive providers. Theoretical thematic analysis was used to help describe transcript data. NVivo-11, a qualitative analysis software package, was used in the thematic analysis process for organization of codes and creation of themes.

Results: To test the effect of psychological variables on HRQOL, hierarchical regression was conducted. First, demographic variables, including household income, parent age, and child age were entered into the model, then social support, burden, and positive and maladaptive coping were entered. Perceived burden, tangible social support, and maladaptive coping were all significant, strong predictors (see Table 1). Themes identified through thematic analysis included social and community support, resources, lack of understanding about ASD demonstrated by others, experiences of the caregiver, caregiver coping strategies, and process of reaching a diagnosis of ASD (see Table 2).

Conclusions: Interventions aimed at improving parental health and well-being should focus on parents most at risk for lower HRQOL. This means reaching out to older parents, parents of young children, and families with fewer socio-economic resources. When deciding how to intervene with parents, providers should focus on assessing for coping strategies, perceived burden, and presence of tangible social support. It may be helpful to offer psycho-education about adaptive coping strategies and/or inform parents about local avenues of tangible social support.