Chronic sorrow and coping mechanisms of parents of children with cerebral palsy and parents of children with Tourette syndrome

Abstract

The study tackled on the nature of chronic sorrow among parents of children with cerebral palsy and Tourette syndrome. Chronic sorrow is believed to be a natural response to the unexpected "loss" of having a normal child that includes related feelings of grief such as sadness, anxieties, anger and mourning. Cerebral palsy and Tourette syndrome were the chosen cases of children because of its pervasive and crippling nature.

The purpose of the study was to explore the lived experiences of the parents and to understand how they cope with the condition of their children. Another aim was to find out the comparison between the levels of chronic sorrow and to determine gender differences in terms of their coping mechanisms within and across groupings. Finally, correlation of certain socio-demographic variables in accordance with the level of chronic sorrow and management of coping mechanisms among them was also examined in the study.

Mixed methods of quantitative and qualitative approaches were applied. Survey questionnaires were administered to 32 participants and interviews were conducted to 11 more participants using purposive sampling. The surveys were administered in order to measure the degree of chronic sorrow and to analyse their ways of coping. Interviews were carried out so as to explore and to come up with a more comprehensive understanding of their personal experiences.

Measures of statistical tests showed that within and across groupings, the levels of chronic sorrow and management of coping mechanisms among parents had no significant differences. But it was found out that the manifestation of feelings of sorrow towards the condition of their children was more persistent and prolonged among fathers as compared to mothers. Findings also revealed several sources of stressors that caused parents to endure more lasting chronic sorrow such as financial incapacity, lack of information about the nature of the disability, reactions of other people that form stigmatization and discrimination, and apparent problems encountered in the developmental milestones of their children.

The study also presented an explanation on the ways on how parents manage to adjust and adapt to their children’s condition. Results indicated the importance of support systems and networks from families and other relatives, friends, and other institutions that aided assistance on the health management and intervention and other needs of their children with special condition.

Given with the results of statistics and findings from direct personal accounts of the parents, it shows the importance of voicing out their feelings and emotions by recognizing their remarkable efforts of living with the challenges and hardships of caring for their children with cerebral palsy and those with Tourette syndrome. By conducting this study, it could help raise awareness and call for advocacy not only for children with cerebral palsy and those with Tourette syndrome but for all people with special cases and needs; most especially, children.