2016 Volume 25 Issue 2 Pages 45-52
This study aimed to investigate the current circumstances of families raising children with severe mental and physical disabilities who also require tracheostomy management. It also aimed to clarify the content of the care guidance, provided by nurses, and its associated issues. An anonymous, self-administered questionnaire survey was administered to 76 families caring for severely disabled children requiring tracheostomy management who were receiving home-visit nursing care throughout Japan. Data collected from 41 respondents were analyzed (valid response rate: 100%). The results indicated that respondents felt that they also had physical disorders and wished for a refreshing change; however, they were faced with a sense of responsibility to look after their child. Therefore, an appropriate support system that helps families to continue to care for their child at home while they themselves receive adequate rest is required. Furthermore, families required different features of support from the hospital and home-visit nurses; they also wanted nurses to provide seamless and consistent care at the hospital and at home. It is important that both hospital and home-visit nurses understand the different needs of families. Further, enhancing respective roles and coordination of hospital and home-visit nursing is required.
