On remote care systems that promote the empowerment of families caring for children with disabilities
Pediatric Care and Transition to Home in Japan
In Japan, remarkable progress has been made in pediatric care, especially in neonatal care. Many lives have been saved not only by highly advanced medical care for premature infants and very low birth weight infants, but also by the standardization of cerebral hypothermia treatment for mature infants born in suspended animation. Although lives have been saved, the number of children requiring medical support such as ventilators and medical care such as suctioning and tube feeding has increased, and the number of children under the age of 19 requiring medical care has doubled over the past 15 years, with the number of children under the age of 19 requiring home ventilators in particular increasing more than 10-fold in 15 years.
On the other hand, due to the government’s policy of early discharge from hospitals and transition to home, families are unable to fully search for or utilize local and social resources, leaving them with children in medical care 24 hours a day, 365 days a year, resulting in sleep-deprived parents, depressed mothers isolated from society, stressed siblings, exhausted grandparents, etc. The report also shows that the children have a ‘disability-specific’ mental health problem. In addition, the children have a unique disability that makes them difficult to raise and prone to interpersonal problems, and they suffer from prejudice and discrimination from society. The study revealed that not only mothers but also their families are isolated from the community due to the limited social resources available.
The Reality of Caregivers
People who support family members or close relatives in need of long-term care, nursing care, or medical treatment without compensation are called “caregivers. Continuing to provide medical care at home without utilizing social resources can be an undue burden for caregivers. Empowerment of caregivers to adjust their lives is called family empowerment. It has been shown that in order to promote family empowerment, it is essential for caregivers to reduce the burden of caregiving and to feel competent in utilizing social resources.
In order to empower the family without isolating them socially, a remote care system that all caregivers can access from their “private” space as soon as possible after the transition of a child in medical care to home (specifically, (1) access to family empowerment programs, (2) individual consultation with professionals, and (3) access to caregivers who have similar concerns) is required.
①Family Empowerment Programs with evidence-based assurances
②Online individual consultation to connect directly with professionals
③Talking peer salons where you can interact with your peers
About Remote Care System for Caregivers
①Family Empowerment Program
- Online program once a week (4 sessions in total)
- Resident professional (facilitator)
- The participants are able to objectively assess their own and their family members’ lives and the current state of care, and adjust their care burdens and utilization of social resources for the future.
- After attending the Family Empowerment Program, participants can receive the caresystem described in (2) and (3) as many times as they wish.
- Textbooks are used throughout all 4 sessions
- Creation of eco-maps and living charts through group and homework
Session 1: Learn about the current situation surrounding your child and family
Session 2: Reflect on the actual life of your child and family and identify the desired life.
Session 3: Set goals for the desired life of your child and family
Session 4 Reflect on the group work so far
② Online individual consultation
We will set up a place where you can consult with CNS (Certified Nurse Specialist) and other medical, educational, and social welfare professionals about individual concerns from a “private” space. The staff of the Care Management Center selects specialists according to the content of the consultation that is accepted 24 hours a day, 365 days a year, and after adjusting the date and time, the specialist directly receives consultation from the registrant.
③ SHG Talking Peer Salon
- Regularly hold classes such as “Mother’s Association”, “Father’s Association”, “Sibling Association”, and “Grandparents Association”
- Chat online with like-minded caregivers
- Professional (facilitator) resident
- You can share your worries and information
At the SHG Talking Peer Salon, with the cooperation of existing parents’ associations and siblings’ associations, you can chat with caregivers who share the same position, such as “mothers’ association”, “fathers’ association”, “siblings’ association”, and “grandparents’ association”. We will set up a place where you can exchange information.
To all professionals (*), please implement the remote care system in society.
With the aim of reducing the sense of burden and difficulty for caregivers and educating and enlightening professionals involved with caregivers, the Remote Care System will be the first social implementation of the Remote Care System in Japan, which consists of (1) a family empowerment program, (2) online individual consultations with professionals, and (3) providing a place for the SHG Chatting Peer Salon.
We would like to ask those who are interested in our remote care system to watch the e-learning training video and take the test (5 questions), then register as a supporter and work within the care system.
(*) Medical personnel, caregivers, educators, government welfare officials, etc. who are regularly involved with the children and their families