Nurse's involvement with families of children with severe motor and intellectual disabilities in their terminal stages

2013 Fiscal Year Final Research Report

• Project/Area Number: 24890264
• Research Category: Grant-in-Aid for Research Activity Start-up
• Allocation Type: Single-year Grants
• Research Field: Clinical nursing
• Research Institution: Musashino University
• Principal Investigator: KOIZUMI Rei 武蔵野大学, 看護学部, 講師 (50385564)
• Project Period (FY): 2012-08-31 – 2014-03-31
• Keywords: 重症心身障害児 / ターミナルケア / 家族 / 小児看護

Research Abstract

Aim: The aim of this study was to describe the nurses' involvement with families of children with severe motor and intellectual disabilities (SMID)in the terminal stages.Methods: A qualitative descriptive research method was used. Study participants comprised eight nurses. Semi-structured interviews were used to collect data. Results: Six categories were extracted as ways in which nurses were involved with families of children with SMID in the terminal stages. These categories were: respect the parents, be mindful of the parents' peace, be close to the child with the parents, maintain the family's state of being, leave proof that the child was alive, and adjust the care for family with the medical team. Conclusion: One of the characteristics of a child with SMID is that, unlike childhood cancer, it is difficult to ascertain the endpoint. Thus, as extracted from the present study, strengthening the involvement with the family will be desirable.