Development of guideline to support empowerment of children who have been discharged from NICU and their families

2006 Fiscal Year Final Research Report Summary

• Project/Area Number: 16592169
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Single-year Grants
• Section: 一般
• Research Field: Clinical nursing
• Research Institution: Kochi Women's University
• Principal Investigator: SATO Mio Kochi Women's University, Faculty of Nursing, Lecturer (20364135)
• Co-Investigator(Kenkyū-buntansha): NAKANO Ayami Kochi Women's University, Faculty of Nursing, Professor (90172361) ; MASUMORI Kazuki Kochi Women's University, Faculty of Nursing, Associate Professor (20238918)
• Project Period (FY): 2004 – 2006
• Keywords: neonatal intensive care unit / family / empowerment

Research Abstract

The present research contributes to the improvement of the present state of the child support system for children who have been discharged from NICU and their families, and aims for the healthy development of such children and the empowerment of families involved with their care.
In the course of this study, it became clear that the difficulties faced by families begin with the hospitalization of their child and continue for years after that. These difficulties were related to the development of the child after being discharged from the hospital, specifically breast feeding, excretion, and weight gain among others. Medical examinations revealed confounding differences in the development of the affected children in comparison to other children, and it appeared that the former were more susceptible to developing infections of the respiratory tract. Furthermore, the families of the affected children were overwhelmed with their rearing, had insufficient sleep and rest and were anxious about the future of their child. The difficulties faced by the families changed depending on the development of their children and involved problems related to the delay in the development of their child as well as problems with rearing and entering kindergarten and school. Families also expressed concern that others might perceive their child as a burden on adulthood in the more distant future. There were also concerns regarding the effects on siblings supporting children who have been discharged from NICU. It became clear that families in such situations raise their children with the help of relatives and lead their lives day by day while attempting to maintain the integrity of the family.
One of the obstacles faced by families raising children discharged from NICU is bias, and it was revealed in interviews that nurses are not involved in these family issues once the child has been discharged. Although nurses understand the difficulties faced by such families when preparing their children for entering kindergarten or school, it was found that they transfer the responsibility of taking care of such children to outpatient doctors or rely on the strength of the family itself, and thus they do not contribute to the empowerment of such families.
This situation indicates that it is necessary for nurses to provide continuous support to children and their families at the clinic or locally even after the child has been discharged from NICU and to actively work towards a society that accepts such children.