Sense of Coherence and Quality of Life in Caregivers of Children With Autism Spectrum Disorders

RESEARCH HYPOTHESIS: This study addressed the hypothesis that a stronger sense of coherence (SOC) would be associated with a higher (better) reported quality of life (QOL) in caregivers and families of children with autism spectrum disorder (ASD).

RATIONALE: SOC is a theory that explains the growth of resilience through three components. This theory proposes that when an individual understands his or her challenges, has tools to manage them, and has a sense of meaning, the individual is better able to cope with life’s challenges.

Previous research has suggested that there is a relationship between a strong SOC and a better reported quality of life. Caregivers of children with ASD often report challenges with their child’s behavior and sleep. This study explored the relationship between SOC and QOL in these caregivers, controlling for child factors (child behavior, child sleep).

DESIGN: This quantitative descriptive study collected information from a mailed or online survey.

PARTICIPANTS: A convenience sample of 62 caregivers of children with ASD was recruited from the Southwest Autism Research and Resource Center in Phoenix, AZ. Participants were the primary family caregivers of children ages 6–11 yr with a diagnosis of ASD confirmed by an Autism Diagnostic Observational Survey–2.

METHOD: All of the following measures were completed by the primary caregiver: the SOC–29, a measure of caregiver SOC; the SF–12, a measure of caregiver health-related quality of life (HRQOL); physical health and mental health (MCS); the Beach Center Family Quality of Life Scale (FQoL), a measure of family QOL factors such as family interaction and disability-related support; the Child Behavior Checklist 6/18, a measure of child behavior; and the Children’s Sleep Habits Questionnaire, a measure of child sleep quality.

ANALYSIS: Means and standard deviations were computed for all variables, and t tests compared the HRQOL with the norms of the U.S. general population. Partial correlations examined relationships between SOC and caregiver HRQOL and SOC and FQoL, controlling for child behavior and child sleep.

RESULTS: The caregivers in this study reported HRQOL physical health (mean [M] = 51.85, standard deviation [SD] = 7.58) that was similar to the U.S. general population (M = 52.18, SD = 7.70), t(61) = –0.34, p = .74. However, their HRQOL mental health was significantly lower (M = 44.95, SD = 9.34) than that of the U.S. general population (M = 50.10, SD = 8.62), t(61) = –4.34, p < .001.

Significant relationships were found between SOC and HRQoL MCS, with caregivers who reported a stronger SOC also reporting better mental health (r = .48, p = .001). The relationship between SOC and HRQOL MCS remained significant with the addition of child factors as control variables (r = .41, p = .001). Similarly, those caregivers who reported a stronger SOC also reported a better FQoL (r = .45, p < .001). The relationship between SOC and FQoL remained significant, controlling for child factors (r = .37, p = .004).

DISCUSSION: The relationships that were found between SOC and HRQOL as well as between SOC and FQoL reinforce the importance of caregivers having an understanding of their situation, tools to manage their challenges, and a sense of purpose. These relationships remained significant independent of child behavior and child sleep, suggesting that caregivers may report a high QOL despite problematic child behavior or poor child sleep quality.

IMPACT STATEMENT: Caregivers of children with ASD are at risk for poorer mental health and a weaker SOC. Comprehensibility, manageability, and meaningfulness, the three components of SOC, provide a framework for occupational therapists to foster resilience in the caregivers of children with ASD.