Experiences, challenges, and needs of mothers who have children with chronic diseases

Abstract

As the prevalence of chronic diseases in children continue to increase, a growing number of parents are finding themselves assuming the responsibility of tending to their child’s medical needs within the home environment. These chronic illnesses, while undoubtedly challenging for the child, also impose significant challenges upon the parents who have to address the complex demands of illness management. The interplay between normal parental responsibilities and new caregiving demands contribute to an increase in parenting stress. By using a qualitative approach, this study aimed to investigate the experiences, challenges, and needs of mothers who have children with asthma, diabetes, and epilepsy. The main objectives of this study were to analyse how the mothers’ self-identities and motherhood roles are redefined in the presence of their child’s illness. Furthermore, it also aimed to investigate what new caregiving responsibilities the illness brings about and how the mothers integrate them into their daily lives. Additionally, this study also explored the relationship between mothers and medical professionals, with the goal of identifying potential gaps in care. Through in-depth semi-structured interviews with six mothers, it was observed that although the mothers were not ill themselves, the chronic illness of their child still had a biographical impact on their lives and self-identities. Moreover, the mothers shared how at-home illness management often proved challenging as it brought about several new tasks that were often difficult to handle in the context of their everyday life. Finally, the mothers proposed several recommendations which can be used to improve care and support for these families.