Empirical analysis of content of support in regional intractable disease consultation.

Aim: The purpose of this research is to study the content of support provided by nurses who were employed in a regional intractable disease consultation project.

Methods: The content of support was classified using records of 943 consultations with intractable disease patients and their families conducted over a 5 year period in a regional intractable disease consultation project in one prefecture of Japan as the subject of analysis. The number of recording units in respective categories was compared.

Results: A total of 1276 recording units were extracted from the data and organized into two major categories, eight minor categories, and 24 subcategories. The major category [Support for problem solving by patients' and their families' own efforts] comprised four minor categories, which have the aims of respect of the independence of the patient and patient's family and support for the solution of problems. The major category [Coordination with support division] comprised four minor categories, as support for problems which are difficult for the patient and their family to solve.

Conclusion: The distinctive features of regional intractable disease consultations conducted by nurses are support from the combined viewpoints of medical care and everyday life, specialized support based on the features of the patient's disease, and coordination with close support persons. In education for nurses who are to be employed in this field, it is necessary to develop competence in responding to the specialized support needs of intractable diseases and coordination of support persons.