Construction of a support model based on the life cycle of children with Turner syndrome and their family members

2019 Fiscal Year Final Research Report

• Project/Area Number: 16K12118
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Research Field: Lifelong developmental nursing
• Research Institution: Seirei Christopher University
• Principal Investigator: Ichie Kazuko 聖隷クリストファー大学, 看護学部, 教授 (00279994)
• Project Period (FY): 2016-04-01 – 2020-03-31
• Keywords: 小児看護 / 家族看護 / 発達障害 / 先天性疾患 / 家族会

Outline of Final Research Achievements

The aim of this study was to conduct a fact-finding survey on girls with Turner syndrome (TS) from childhood to adolescence and their family members concerning awareness of TS and quality of life (QOL) of girls with TS and to use the results as basic information for developing a scale to measure QOL in girls with TS and their family members.The girls’ thoughts on QOL differed depending on their growth and development stage. Regarding family members’ thoughts on girls with TS and the family environment, the importance of the family association and involvement of others was suggested. Further analyses are needed to develop a scale on the QOL of girls with TS and their family members during each life stage with a view towards adulthood.

Free Research Field

看護学

Academic Significance and Societal Importance of the Research Achievements

TS女児と家族への支援では、小児期からのピア活動として同じ疾患や体験者とのかかわりが求められる。しかし、TS女児と家族、支える家族会への支援は十分ではない現状がある。TS女児と家族・家族会に視点をおき、思春期から成人期への移行過程における支援が求められる。TS女性および家族に対し、思春期から成人期に移行する過程において、QOL向上を基盤とした多職種の連携・協働による社会的・職業的自立をめざした支援プログラムの検討が重要と考えられる。