Mediators of Problem Behaviors and Psychosocial Outcomes in Siblings of Adults with Autism Spectrum Disorder and Down Syndrome

Background: Research investigating caregiver burden has focused primarily on parental or spousal caregivers (e.g., Stuart & McGrew, 2009; Blood et al., 1994). Relatively little work has examined burden for non-disabled siblings who provide care (e.g., Bigby, 1997; Heller & Arnold, 2010; Heller & Kramer, 2009; Tozer et al., 2013).

Objectives: The study examined caregiver outcomes and potential mediators of those outcomes for sibling caregivers. Specifically, we tested whether two cognitive appraisal types (i.e., challenge and threat) and two coping strategies (i.e., problem-focused and passive-avoidant) mediated the relationships between (a) problem behaviors and caregiver burden, and/or (b) problem behaviors and reported benefits across three groups of siblings: (a) siblings of adults with Autism Spectrum Disorder (ASD), (b) siblings of adults with Down Syndrome (DS), and (C) siblings of adults in a Mixed diagnosis group, i.e., siblings who were reportedly diagnosed with both ASD and DS.

Methods: A web-based survey was administered to all participants. The ASD group (n = 44) consisted of non-disabled siblings who reported their siblings to have Autism, PDD-NOS, or Asperger syndrome and whose reports were confirmed using the Gilliam Autism Rating Scale- Second Edition (GARS-2; [Gilliam, 2006]).  The DS group (n = 66) consisted of non-disabled siblings who reported their siblings to have DS. The Mixed group (n = 13) was comprised of sibling of adults with diagnoses of both ASD and DS. The three groups of non-disabled adult siblings were combined for analysis and referred to as the Disability group (N = 123). Eight tests of mediation were proposed.

Results: Hayes PROC procedure for SPSS was used to assess mediation (Hayes, 2009). Threat appraisal positively mediated the relationship between problem behaviors and caregiver burden (indirect effect = .44, SE = .10, 95% CI = .27, .65) and negatively mediated the relationship between problem behaviors and reported benefits (indirect effect = -.25, SE= .11, 95% CI = -.51, -.06). In addition, the use of passive-avoidant coping significantly positively mediated the relationship between problem behaviors and caregiver burden (indirect effect = .51, SE = .14, 95% CI = .26, .81) and significantly negatively mediated the relationship between caregiver burden and reported benefits (indirect effect = -.35, SE = .15, 95% CI = -.71, -.12).

Conclusions: The study confirms the important role of appraisal and coping style in explaining and understanding the associations between problem behaviors exhibited by individuals with disabilities and the psychosocial outcomes of their caregivers (Lazarus & Folkman, 1984).  Specifically, the impact of problem behaviors on both positive (i.e., fewer reported benefits) and negative outcomes (i.e., greater caregiver burden) was significantly mediated by the use of a negative (threat) cognitive appraisal type and a negative (passive-avoidant) coping strategy. The findings suggest that interventions to help caregivers view stressors alternatively (e.g. challenge vs threat appraisal) or cope differently (e.g., problem focused vs avoidance coping) may reduce caregiver’s experience of burden.  Further exploration of these findings using larger samples of adult siblings and caregivers of individuals with ASD and DS is warranted.