A comparison of mothers' concerns regarding the care‐taking tasks of newborns with congenital heart disease before and after assuming their care

Abstract

This exploratory study sought to identify, during the newborn's hospitalization, mother's concerns regarding the care-taking tasks of their infants with congenital heart disease and to determine, 1 month subsequent to discharge, whether the mother's concerns had changed. The sample consisted of ten mothers of infants aged up to 2 months at the time of the first interview which was conducted in hospital. A second interview was conducted in the home of the subjects 1 month subsequent to discharge. The content of the responses to the interview questions was analysed and presented under the major headings of selected characteristics of the sample, developmental tasks of parenthood and selected maternal attributes. The largest number of concerns in both interviews related to the tasks of learning how to anticipate and to recognize the needs of the baby. A significant difference was found between the total number of concerns reported by each mother in the two interviews. There was an overall increase of 61%. Implications and recommendations are presented in light of the small non-random sample.

Psychological Distress Experienced by Parents of Young Children With Congenital Heart Defects: A Comprehensive Review of Literature

“…Far less often than stress, researchers have investigated the prevalence of worry or concern (Brosig, Mussatto, et al, 2007;Docherty et al, 2002;Lan et al, 2007;Maxwell & Gane, 1962;Pinelli, 1981). In the studies reviewed, the prevalence of worry and concern was found to be quite high.…”

“…Other commonly identified stressors were the daily care of the child, which included administering multiple medications, difficulties with feeding, and dealing with behaviors that are associated with a CHD diagnosis, such as being difficult to soothe as an infant (Darke & Goldberg, 1994;Goldberg et al, 1990;Majnemer et al, 2006;Miles et al, 1989;Pelchat et al, 1999;Pinelli, 1981;Svavarsdottir & McCubbin, 1996;Torowicz et al, 2010). Research indicated that the daily care of the child was a stressor that correlated with the severity of the diagnosis.…”

“…The more severe the diagnosis was, the higher the burden of care, which could lead to increased stress (Torowicz et al). Further, research suggested that the psychological distress of parenting a child with CHD often led to parents reporting decreased feelings of competence in their ability to parent (Brosig, Mussatto, et al, 2007;Pelchat et al;Pinelli;Svavarsdottir & McCubbin).…”

“…This study recommended providing support and counseling for parents early during the infants' first months of life, which was crucial in promoting parental attachment and adjustment. In another study, Pinelli (1981) identified concerns of mothers regarding their ability to accurately recognize the needs of their newborns with CHD.…”

“…In a study that considered maternal distress after the child had been discharged from the hospital, mothers were interviewed 1 month after discharge (Pinelli, 1981). These mothers reported that taking on the responsibility of caring for their child was more concerning to them after they had been home from the hospital for 1 month.…”