Chronic sorrow in parents of children with autism spectrum disorder

Purpose: The purpose of this dissertation was to explore the phenomenon of chronic sorrow among parental caregivers of children with Autism Spectrum Disorder (ASD) and to begin to understand how the interaction between parents and their child’s pediatric health care providers can have a modifying impact on their experience of chronic sorrow. Design and Methods: A non-experimental, descriptive, correlational design was used to describe the occurrence of chronic sorrow among parental caregivers of children with ASD and to examine the relationships between variables posited in the model. The instruments used for data collection included the Burke/Eakes Chronic Sorrow Assessment Tool (BECSAT) and the Measure of Processes of Care-20 (MPOC-20). Results: One hundred and one parents (mothers n=91; fathers n=9; other caregiver n=1) completed the online survey. Between 48% (heartbroken) to 80% (overwhelmed) of the sample reported either a 3 or 4 on a 1-4 point scale demonstrating characteristics of chronic sorrow that were upsetting and between 44% (feel more strongly than at first) to 96% (have ups and downs) reported experiencing the critical attributes of chronic sorrow. A Spearman’s rho correlation between the critical attributes subscale and the number of years since child’s diagnosis was calculated and a positive, nonsignificant relationship (r=0.168, p =0.96) was demonstrated. A positive and nonsignificant relationship was also noted between the characteristics of chronic sorrow and time since child’s diagnosis of ASD (r = 0.028, p =0 .79). Spearman’s rho correlations between external management methods and critical attributes of chronic sorrow (r = -.12, p = .23) and external management methods and characteristics of chronic sorrow (r = -.14, p = .16) demonstrated non-significant, but negative relationships. A Spearman rho correlation showed statistical significance between family centered care and the external management subscale of the BECSAT (r =.42-.74; p = .000). Conclusions: Chronic sorrow exists in the population of parents of children with ASD. External management methods as described in the model correlate with key aspects of family-centered care. Implications: The chronic sorrow model can be used by pediatric healthcare providers caring for children with ASD and their parents to provide support and alleviate discomfort.