Service Efficacy As a Moderator of Caregiver Burden in Families of Individuals with Autism Spectrum Disorders

Background:  Research consistently indicates that parents of children with Autism Spectrum Disorders (ASD) experience considerable stress and burden related to caring for their child (Schieve et al., 2007). A lack of available and accessible services has been shown to cause significant distress for families, which at times can lead to a full-blown crisis (White, McMorris, Weiss & Lunsky, in press). Past research has yielded mixed results on the role that service use plays in preventing or mitigating the effects of caregiver burden and family distress (Gray & Holden, 1992; White & Hastings, 2004). No studies have examined the intermediary role that parents’ service efficacy (i.e., knowledge of the service system and perceived ability to effectively access services) may have on the relationship between family distress and caregiver burden.

Objectives:  The current investigation aims to examine the relationship between levels of family distress and caregiver burden. In addition, the study aims to examine the role of caregivers’ knowledge of the service system and ability to effectively access appropriate services, within the relationship between family distress and caregiver burden. 

Methods:  As part of a larger study examining service utilization in adolescents and adults with ASD, 233 caregivers completed an online survey. Caregivers (94% mothers) were 33 to 79 years of age (M=48.06, SD=7.32) and children with ASD (80% male) ranged in age from 6 to 56 (M=17.85, SD=6.15). Caregiver ratings of family distress were measured with the Brief Family Distress Scale (Weiss & Lunsky, 2011), and caregiver burden was measured with the Revised Caregiver Appraisal Scale (Burden subscale; Lawton, Moss, Hoffman & Perkinson, 2000). To assess service efficacy, caregivers were asked to rate their perceived knowledge of the service system and ability to access appropriate services, on a 5-point Likert scale, ranging from 1 (disagree a lot) to 5 (agree a lot).

Results:  Correlation analyses revealed significant positive associations between family distress and caregiver burden (r=.51, p<.01), and negative correlations between service efficacy and caregiver burden (r=-.22, p<.01). Regression analyses were used to test whether service efficacy moderated the relationship between family distress and caregiver burden. Analyses revealed a significant interaction between family distress and service efficacy (F_change(1, 228)=10.52, p<.01), such that when families were distressed, knowledge of the service system and ability to access appropriate services ameliorated caregiver burden. 

Conclusions:  These findings suggest that parents with greater perceptions of service efficacy may experience more positive caregiver and family outcomes. Specifically, parents’ knowledge of the service system and ability to access appropriate services may lessen the impact that family distress may have on caregiver burden. The present findings contribute to our knowledge of the importance of service efficacy, as well as expand our understanding of distress or crisis experiences for families with a child with ASD.