As Normal a Life as Possible: Mothers and Their Daughters with Congenital Heart Disease

Abstract

This study utilized qualitative descriptive methodology to examine the impact of the chronic illness, specifically congenital or acquired childhood heart disease, on the mother-daughter relationship. Many studies have examined the effects of the child's illness on the mother-child relationship when the child is very young, but few have looked at the ongoing problems that chronic illness may cause. The investigator observed in her own clinical practice that the mother-daughter relationship when the daughter was chronically ill frequently appeared more antagonistic and ambivalent. Fourteen mothers, eleven daughters, and three sons were interviewed. Daughters and sons ranged in age from nine to fifty-six. Three variables arose from the data. The core variable, which the author called "normalizing our relationship," included themes related to how mothers and their chronically ill daughters and sons try to maintain as normal a life as possible. The second variable, called "relating as mother and daughter," included those themes concerning how mothers and daughters cope with the daughter's chronic illness and how their relationship is impacted. The third variable, "relating to health care providers," spoke to how practitioners can help mothers and their chronically ill sons or daughters to manage their health problems. The core variable was related to the other two variables in that: (1) mothers and chronically ill daughters saw their relationships as very normal and unaffected by illness, and (2) all participants felt that the role of health care providers should be one of helping to maintain a normal lifestyle despite chronic illness. This study adds to existing nursing literature by reinforcing previous studies which describe attempts at and strategies for normalization by families of chronically ill children. It builds on this literature by examining the mother-child relationship when the child is chronically ill over the course of the lifespan.