Parental Projections of Developmental Outcome, Quality of Life and Coping in Children who Require Neonatal Intensive Care

Parental Projections of Developmental Outcome, Quality of Life and Coping in Children who Require Neonatal Intensive Care

Parental Projections of Developmental Outcome, Quality of Life and Coping in Children who Require Neonatal Intensive Care

Parental Projections of Developmental Outcome, Quality of Life and Coping in Children who Require Neonatal Intensive Cares

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1. Objectifs


Intentions :
The purpose of the first article is to «explore the parental perspective of the predicted QOL [quality of life] of babies hospitalized in the NICU [Neonatal intensive care unit].» (p. 40) The aim of the second article is to assess «the parental experience of the current [baby] hospitalization.» (p. 76)

2. Méthode


Échantillon/Matériau :
L’échantillon des deux articles est composé de onze parents (9 femmes et deux hommes) dont un nourrisson est hospitalisé dans une unité de soins intensifs néonataux d’un hôpital montréalais.

Instruments :
Guide d’entretien semi-directif

Type de traitement des données :
Analyse de contenu

3. Résumé


Results from the first study shows that «prognosis of development outcome influences parental predictions of QOL; however, this is not sufficient to fully determine it. QOL is multidimensional construct, of which developmental outcome is only one element. QOL, as estimated by the participants in this study, has an objective facet in addition to the subjective. Uncertainty is a central theme dominating parental discourse when making future predictions. Parents used a variety of coping mechanisms in dealing with adversity caused by the current illness and its uncertain outcomes. Parents who believed that they, and their child, would be able to adapt to an eventual poor developmental outcome were able to predict a reframed QOL [R-QOL]. This R-QOL was described as superior to the poor QOL parents typically associated with a poor developmental outcome, but not quite as good as the QOL believed to accompany good developmental outcomes.» (p. 61-62) Results of the second article show that regarding grief, «[p]articipants described the evolution of their emotional reactions to the losses suffered throughout the pregnancy, delivery, and NICU hospitalization.» (p. 77) Concerning attachment, «most parents formed a strong attachment with their child, but talked at length about the difficulties they encountered. Many found exclusion from routine care like feeding and bathing to be difficult and often felt like observers, especially when the child was unstable.» (p. 79) Finally, «[m]any of the parents saw themselves as the main advocates for their baby. They were frequently present at the bedside and were concerned with only one baby. They often provided continuity in a unit where teams of doctors and nurses changes frequently. Over time, they acquired a large amount of medical knowledge and were able to actively participate in the treatment decisions. In addition, parents stressed their role in predicting what values will be important in the long term and how the baby’s condition and future impairments might integrate in the family […].» (p. 82)