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

Abstract

In this study, I used a qualitative descriptive methodology to examine the effect of chronic illness 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. Eleven mothers and 11 daughters were interviewed. Normalizing in the face of chronic illness was the overriding theme of the study. Two subthemes related to normalizing arose from the data. "It's no big deal" was found to best describe how most mothers and their daughters with heart disease viewed their lives and relationships. One other subtheme, "Sometimes it's a very big deal," was described by those mothers and daughters who could not, due to ongoing health problems, normalize their lives. Relationships with family as well as age, severity of illness, and developmental stage, were seen as mediators of normalizing in the lives of the participants.

Household Costs Associated with Objectively Diagnosed Allergy to Staple Foods in Children and Adolescents

“…We suggest that there are at least 4 explanations for this observation. First, as has been reported for adolescents with other chronic conditions, [19][20][21] households with food allergic adolescents may have normalized their lives and seek health care professionals' services less often. It remains unclear if this is attributable to adolescents' perceived confidence in managing their food allergies or the more dynamic nature of food allergies (tolerance vs persistence) in children.…”

The life experience of parents of Congenital Heart Disease adolescents: A meta-synthesis

“…The transition phase included the transfer of responsibility from pediatric care to the adult one, and represented the period in which parents start to give more autonomy in decision making to the young adult. Some families consider this situation as a diffi cult and intense period, and they would like that their child will never grow up; but, at the same time, they realize how this transfer is considered as a fundamental step, in which they need to release responsibility and independence to their children [26,27].…”

“…They said they didn't expect her to live and get out of the hospital. Then they said we don't expect her to live a year" [26].…”

“…despite copious clinical visits, surgeries, or unexpected health deterioration of health, some parents attempt to adapt themselves to the new life, "normalizing" as much as possible, as suggested by health care providers [26]. Others parents, instead, tend to make a comparison between their own children and healthy peers, because schools and society are the fi rst to defi ne the adolescents affected by CHD as" sick"…”

Mothers of infants with congenital heart defects: well-being from pregnancy through the child’s first six months

“…Although family roles are changing, mothers are still the primary caregivers and participate more in caregiving tasks than fathers [7]. Caring for a child with a chronic illness can therefore be especially demanding for mothers: They experience more stress, guilt, and sadness as compared with fathers [8] and develop symptoms of anxiety and depression [9].…”