Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study

Abstract

Caregiver strain is the adverse impact that parents of children with emotional and behavioral issues including autism often experience (e.g. negative consequences of caregiving such as financial strain and social isolation; negative feelings that are internal to the caregiver such as worry and guilt; and negative feelings directed toward the child such as anger or resentment). This study showed that on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was linked to improved child functioning and behavior. Routine assessment of caregiver strain and referral to evidence-based programming and supports may help alleviate some of the burden that families of children with autism commonly experience.

Keywords: North America; adaptive functioning; autism; caregiver strain; parents.

Figure 1

shows the mean for each Caregiver Strain Questionnaire item at times 1 and 2 in this study and from a prior study among parents of children with autism conducted by Khanna and colleagues (2012). Higher ratings indicate more caregiver strain. The item “Relating to child” was reverse scored both studies. P-values were computed using two sample t tests allowing for unequal variance comparing each item mean at time 1 in this study with the corresponding item mean from the study by Khanna and colleagues.