A Multifaceted Study on the Burden of Aging Parents of Adults with Autism Spectrum Disorders in Residential Care

2021 Fiscal Year Final Research Report

• Project/Area Number: 19K02186
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Review Section: Basic Section 08020:Social welfare-related
• Research Institution: National Hospital Organization, Kikuchi National Hospital
• Principal Investigator: Tanaka Kyoko 独立行政法人国立病院機構菊池病院(臨床研究部), 臨床研究部, 医師 (30740154)
• Project Period (FY): 2019-04-01 – 2022-03-31
• Keywords: 自閉症スペクトラム / 介護 / 高齢者 / 災害

Outline of Final Research Achievements

The perspectives of parents of adults with autism spectrum disorder (ASD) were investigated to better understand their age-related issues, including an assessment of current caregiving and changes in their caregiving role over time. Aging parents (average age: 71.3 years) who continue to provide long-term care to their adult children in a residential facility reported concerns about their own physical and mental health. In 9.6% of cases, other family members (daughters) had already assumed the role of primary caregiver to the adults with ASD. Parents reported their current burden of care had been significantly reduced from when their child first entered residential care. They also reported that unexpected events (e.g., natural disaster) reduced their direct burden of care but increased their sense of worry and mental burden.

Free Research Field

児童精神医学

Academic Significance and Societal Importance of the Research Achievements

成人の自閉スペクトラム症を介護する高齢になりつつある家族に焦点を当てた研究は少なく、貴重な資料になり得る。保護者自身も加齢に伴う問題を抱え、介護者としての負担や不安は一層高まっていることを問題提起した。災害による介護への影響についても、実際の保護者からの聞き取りによる示すことができた。今後高齢になる保護者・当事者の問題は深刻味を増す一方であり、社会的意義は大きいと考える。