The Family House Forum on pediatric palliative care was held in Tokyo and run by Non-Profit Organization (NPO) Family House in August 2016. Founded in 1991, NPO Family House Japan is the first organisation in Japan to provide a “home away from home” to families of children with life-threatening and life-shortening illnesses who have come from rural areas or overseas to large hospitals in Tokyo for their treatments. In addition, it is in charge of the association called “Japan Hospital Hospitality House (JHHH) Network” which consists of 125 similar houses across Japan.
The Family House Forum took place on 7 August 2016 in Tokyo and featured two invited guest speakers from the U.K. these being Mr. Francis Edwards, the Children’s Palliative care liaison nurse in Bristol Children’s Hospital in U.K. and Ms. Junko Dunne, Non-Executive Director of the Board and Governor of Care at Shooting Star CHASE.
More than 200 people attended the forum, which was made up of medical doctors, nurses, and medical and nursing academics. Mr. Edwards gave a wide-ranging presentation addressing the key issues in children’s palliative care. He spoke about palliative care being a philosophy of care and not a location and he spoke about the meaning of hospice. He compared this to his visit to Family House and a workshop he did with Family House managers.
Total pain
He made the point that Family House was in the true sense a hospice for parents during their stay. During his presentation he pointed out that the journey of child and his or her family starts when he or she is diagnosed with a life-limiting or life threatening condition. He made the point that Family House plays a key part in the journey for parents and offered them a ‘safe and therapeutic place’ for parents to express their ‘suffering’ or what he calls ‘soul pain’. He stressed the importance of addressing a child and family’s ‘Total Pain’ and this was best done in taking a truly multidisciplinary team approach.
Ms. Junko Dunne talked about her child’s and family’s experiences of spending time at Shooting Star CHASE, a children’s hospice in the UK. As a result of their experience, Ms. Dunne had become a Non-Executive Director of the Board and Governor of Care at CHASE. Ms. Dunne stated the hospice had taught her the importance of keeping life as normal as possible and spending quality time with her child. Their support had enabled her to do this.
Total care
One of nurses who attended the forum commented after the forum that she understood that the contribution of Family House is essential to achieve total care. It seems that many medical professionals were able to understand the important role Family House can play as part of the multidisciplinary team in delivering the philosophy in paediatric palliative care across Japan.
On the previous day, the annual conference of JHHH Network was held. At the conference, the Head of Nursing at “Momiji House”, which was recently founded, based on the children’s hospice model in U.K., made a presentation. In addition, Mr. Edwards held a workshop to share the importance of the quality of communication with children and their families in paediatric palliative care.
Through these two events, Family House learned a great deal from the UK experience of paediatric palliative care and how they and others in Japan can continue to grow and develop their services, and work with others to improve the quality of service in order to improve the quality of life for users and staff who use Family Houses across Japan.
Please click here should you wish to download the presentation by Mr Francis Edwards.
This article originally appeared on the International Children’s edition of ehospice.
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