Elucidation of Aspects of Health Literacy of Families of Children with Severe Motor and Intellectual Disabilities in Infancy

2020 Fiscal Year Final Research Report

• Project/Area Number: 17K17475
• Research Category: Grant-in-Aid for Young Scientists (B)
• Allocation Type: Multi-year Fund
• Research Field: Lifelong developmental nursing
• Research Institution: Chiba Prefectural University of Health Sciences
• Principal Investigator: tubaki sachiko 千葉県立保健医療大学, 健康科学部, 助教 (10604861)
• Project Period (FY): 2017-04-01 – 2021-03-31
• Keywords: 重症心身障害児 / 家族看護 / ヘルスリテラシー

Outline of Final Research Achievements

To clarify the aspect of Health Literacy (HL) in families of infants with severe motor and intellectual disorder in infancy, we carried out an interview survey detailing medical care content, child care and daily life, as well as thoughts towards the family for six mothers of infants with severe motor and intellectual disorder. As a result, mothers noticed small changes in their children by gaining knowledge through nursing care, which included gaining HL in terms of the increase in what the child can do, encourages the mother. It provided further HL in that that when they, as mothers, were mentally stable, they were able to transition from caregiving to child-rearing. They demonstrated HL by showing flexibility with their time while the infants’ fathers’ were busy, and at the same time, became more conscious of their involvement with the infants’ siblings. It became clear that the HL acquired so far was constantly exhibited.

Free Research Field

障がい児看護

Academic Significance and Societal Importance of the Research Achievements

乳幼児期の重症心身障がい児の家族は、感情的な混乱を抱え、医学的には回復しない障がいを有する我が子を抱え、日々の医療的ケアや介護に追われ、兄弟などの家族員の生活も整えつつ、児との新たな育児生活を構築していかなくてはならず、熱心な家族ほど療育に偏り、家族の生活が犠牲になることが多い。本研究により、そのような家族が、障がい児が家族員となったことで必要となる新たなHLを獲得しつつ、それまでに獲得したHLも発揮して家族全員が健康的な生活を送るように変化した様子が明らかとなった。これらから、看護は、新たなHLの獲得を促進し、それまでに獲得したHLが発揮されるよう関わる必要があるとの示唆が得られた。