Japanese children under home-based medical care and childcare stress: Assessment of caregiver stress

Purpose: In Japan, the number of children under home-based care and medical treatments is recently increasing. The physical condition of these children is usually unstable; therefore, their parents have to pay for expensive... [ view full abstract ]

Purpose:
In Japan, the number of children under home-based care and medical treatments is recently increasing. The physical condition of these children is usually unstable; therefore, their parents have to pay for expensive treatment. The purpose of this study was to examine the features of parents’ stress due to caring for handicapped children at home.

Method:
The participants, who were their children’s main caregivers, aged 28–44 years with children under outpatient treatment at two general hospitals in Japan. Participants’ consent was obtained, and the survey was conducted from February 2015 to January 2016. During this period, we conducted semi-structured interviews every 2 months for the assessment of parents’ demographics, environmental factors, childcare conditions, anxiety levels, and Parenting Stress Index Short Form (PSI-SF) scores.

Results:
Six mothers and one father were identified as the main caregivers at home. The participants’ PSI-SF scores were relatively high throughout the year compared with parents with healthy children. Among 19 children, three needed oxygen therapy at home; one, tube feeding; five, gastrostomy; seven, suction for aspiration; and three, inhalation therapy. With regard to the family structure, five participants had nuclear families, two were living with their children’s paternal grandparents. Based on the interview, we found that the parents of handicapped children under home-based medical care particularly showed higher levels of anxiety.

Conclusion:
To reduce the stress of parents with children who need home-based medical care, it is indispensable to establish support systems that meet the needs of these individuals. For an effective support system, medical experts should have wider and diversified views on medicine, welfare, and education.