 Relationship between Caregiver Burden and Spirituality in the Parents of Children with Chronic Illnesses

Abstract

Jay Belsky’s process of parenting model illustrates the significance of a parent in a young child’s life, especially during the critical developmental stages. To fulfill the multitude of needs of a young child with chronic illness as a parent and a caregiver can mentally and physically overload an individual. This paper studies the burden felt by the parents of children with chronic illnesses residing in Chennai. It also assesses sleep quality as it is one of the most affected facets of life of a caregiver. During crises, meaning seeking through religion and spirituality has been recognized as a positive coping mechanism. Therefore, the aim of this paper was to understand the relationship between engagement in spiritual practices and the burden felt by the parents of children with chronic illnesses residing in Chennai. Through purposive sampling, 34 parents of children with different chronic illnesses currently residing in Chennai were approached and interviewed. After a week of rapport building, burden, sleep quality and spirituality were assessed by administering standardized questionnaires- Montgomery Burden Scale, Sleep Quality Scale and SpREUK-P and the data was quantitatively analyzed. The results indicate significant objective, subjective stress burden and moderate sleep disturbances felt by the parents and also shows that there was a significant negative relationship between engagement in spiritual practices and burden, demonstrating that spirituality might have a positive impact on caregiver burden. The narratives reported by the respondents helped better understand the numerical data acquired.