"We are exhausted, worn out, and broken": Understanding the impact of service satisfaction on caregiver well-being.

This study looked at how happy parents are with autism services and how this affects their stress levels. Researchers surveyed over 1800 parents of autistic children in Ontario, Canada. They found that when parents were more satisfied with services, they had less stress. The study also showed that trying to find and access services affects parents' physical health, emotional well-being, and finances.

This large Canadian study examined how satisfaction with autism services impacts caregiver stress among 1810 primary caregivers of autistic children in Ontario during summer 2021. Using hierarchical multiple regression analysis, researchers found that service satisfaction significantly predicted caregiver stress levels, even after controlling for marital support, family income, and child support needs. Qualitative analysis of 637 participants revealed that navigating and accessing autism services affects parent well-being across three domains: physical, emotional/psychological, and financial. The study addresses a significant research gap by examining service-related factors and pandemic-era disruptions on Canadian families using a substantial sample size.

Results suggest that improving autism service quality and accessibility could significantly reduce caregiver stress. Service providers should consider the multi-dimensional impact of service navigation on families and develop strategies to minimize physical, emotional, and financial burdens during the service access process.

Study was conducted during the pandemic which may have influenced results. Cross-sectional design prevents determination of causality. Limited to Ontario families only, reducing generalizability to other regions or healthcare systems.

Few studies exist that have examined the impact of service-related factors and system-level disruptions (i.e., the pandemic) on families of autistic children in Canada using large sample sizes. To address this gap, the goal of this research was to examine the impact of satisfaction with autism services on caregiver stress, controlling for important demographic variables, such as family income, marital status, and child level of support needs. The impact of navigating and accessing services on parent well-being was also explored. A total of 1810 primary caregivers of autistic children or youth living in Ontario, Canada completed a survey with both closed- and open-ended questions in the summer of 2021.

A hierarchical multiple regression was conducted to examine the impact of satisfaction with autism services on caregiver stress. Open-ended responses on the survey from a subset of the sample (n = 637) were coded using thematic analysis to understand the impact of navigating and accessing services on parent well-being. Satisfaction with services significantly predicted caregiver stress after controlling for marital support, family income, and child level of support needs. Qualitative analysis revealed impacts of navigating and accessing services in three areas: (1) Physical, (2) Emotional/Psychological, and (3) Financial Well-being.

Understanding parent perceptions of satisfaction with services can shed light on strategies for improving services that support parent well-being.