Development of a nursing system to relieve the degree of stress in families of children with disabilities

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The purposes of this research were to identify the state of nursing for children with disabilities and their families at outpatient clinics, and to develop a nursing to relieve the degree of stress experienced by the family.Results were as follows :1. We investigated the state of nursing care for children who require home care and their families by means of a questionnaire conducted at outpatient clinics. Subjects were 512 head nurses of outpatient clinics in Japan. The rates of practice of nursing care related to home care were higher than those of care related to families' health and finance. A relationship was identified between the existence of a pediatric nurse specialist at the outpatient clinic and the quality of nursing.2. We visited two spina bifida clinics in the U.S.A. in order to collect data regarding medical team systems. The spina bifida clinic was identified as very effective system for providing comprehensive care for patients and their families. A specific nurse had a special role as coordinator of the medical team.3. We developed nursing guidelines focused on total care for children with spina bifida and their families. We also examined the effect of nursing practice on attainment of self-care by children and on the degree of stress experienced by mothers. In several cases, the degree of stress felt by mothers decreased when children improved, independently of illness management practice.4. We held a nursing forum in order to distribute the results of this research to a wide audience of nurses, and to build a nursing network.