Difficulties and needs of home-visiting nurses who take care of children with terminal-stage cancer and their families

Abstract

The needs of home-based care for children with incurable cancer are expanding; however, there are problems owing to the rarity of the disease and the treatment progress, which makes it more difficult for children and their families to make decisions. From January to March 2018, we performed a survey among home-visit nursing stations in Kanagawa Prefecture to clarify the difficulties and needs of visiting nurses who take care of children with terminal-stage cancer and their families, and to consider the ideal medical collaboration to support better home-based care. Responses were obtained from 148 of the 395 stations. Twenty-four stations (16.2%) had experiences of visiting children with terminal-stage cancer. Regardless of their experiences, the visiting nurses reported having difficulty in assessing the symptoms of children at the end of life and in providing psychological care for these children and their families. They reported the necessity of a collaborative system with medical institutions and obtaining knowledge regarding childhood disease. Limited experiences in visiting children with cancer may be associated with their feeling of having difficulties in understanding children and their families, and in offering knowledge and skills specific for the child’s disease. To build a good relationship and support children and their families in a short period, the visiting nurses need to collaborate with medical institutions. To guarantee quality of life and a good home-based care for children and their families, a collaborative system and information sharing between the visiting nurses and medical institutions before and after patients’ transition to home-based care are necessary.