Examination of Chronic Sorrow Among Parents of Children With Disabilities: Cross-Sectional Study

TL;DR

This study explores chronic sorrow in Saudi parents of children with disabilities, finding that they experience significant emotional distress and benefit from social and internal coping strategies.

Contribution

The study applies the chronic sorrow theory to Saudi parents of children with disabilities, a population previously understudied in this context.

Findings

Parents reported high levels of sorrow related to their child's disability and developmental disparities.

Belief in fatalism and social support were key internal and external coping strategies for managing chronic sorrow.

Chronic sorrow was strongly linked to feelings of loss and disparity but not to the time since diagnosis.

Abstract

Parents of children with disabilities face many challenges when providing care, along with persistent worry and fear about the child’s health outcomes and the impact of the disability on their lives. These parents experience stressful situations and face many emotions, one of which is chronic sorrow (CS). Therefore, the theory of CS was introduced to examine and measure feelings of CS among parents. Little research has been conducted with Saudi parents with a child with disabilities and the utilization of CS theory in this population is limited.

This study aims to examine the application of CS theory on parents of children with disabilities in Saudi Arabia.

A cross-sectional design was used to obtain data from 89 participants who are parents of children with disabilities. A web-based questionnaire was distributed to measure CS.

The study examined the concepts within CS theory. The concept of loss experience yielded a moderately high score (mean 3.3, SD 1.10); of all the variables measuring loss experience, parents scored high in feeling sad when thinking about their child’s disability (mean 3.9, SD 1.24). Parents also reported a moderately high score (mean 3.3, SD 1.06) for the concept of disparity, specifically when their child does not meet the same developmental milestones as their peers (mean 3.8, SD 1.30). Feelings of CS also displayed a moderately high score (mean 3, SD 0.87), with the periodic nature of CS scoring the highest within the concept of CS (mean 3.6, SD 1.16). In addition, internal and external management methods that parents believe are effective were examined. Internal management of CS was believed to be of high importance (mean 4.6, SD 0.33), specifically the belief of fatalism (mean 4.8, SD 0.50). Parents also viewed external management as important in navigating their emotions (mean 4.5, SD 0.42), specifically social support from family and the community (mean 4.7, SD 0.55). This study identified strong positive relationships between sorrow and loss experience and disparity (both r=0.765 and P<.001). Lastly, the study found no relationship between CS and time elapsed since parents received their child’s diagnosis (r=−0.009; P=.94).

This study applied the theory of CS to the parents of children with disabilities and they reported feelings of loss, disparity, and CS. Therefore, this population should be screened and provided with parental emotional care. Interventions to enhance parental mental health and well-being and support CS management should be developed and used by health care workers. Parental acceptance of their child’s disability does not mean the absence of CS, as it is part of the normal grieving process. Anticipating CS triggers and applying internal and external management are essential to improving parental mental health and child health outcomes.