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1877 Home Care of Children with FOP (Fibrodysplasia Ossificans Progressiva)
  1. H Kuwata1,
  2. H Soga1,
  3. M Shirasaka1,
  4. Y Komai1,
  5. K Kuwata2
  1. 1Department of Clinical Nursing, Division of Pediatric Nursing, Shiga University of Medical Science, Otsu City
  2. 2Center for Emerging Infectious Diseases, Gifu University, Gifu City, Japan

Abstract

Background FOP (Fibrodysplasia Ossificans Progressiva) is a rare disease in which muscles in the body gradually replaced with bones. There is no therapeutic at this stage. Since population of FOP patients is small, home care methods are devised only individually.

Objective The aim of this study is to investigate the actual situation of home care for FOP patients and to consider the possible nursing home care for FOP patients.

Methods Subjects were 10 FOP patients (1 male and 9 female) and their families. We interviewed them on the daily care of their childhood and analyzed the transcripts by qualitative descriptive study. For ethical consideration, we explained to the subjects about contents of this study and got the informed consents.

Results We found the categories of FOP patients of the actual situations as follows;

7 categories in infants; reduction in outdoor playing, progress by the physical damages, appearance peculiar to ossific symptoms etc.; 6 categories in schoolchildren; the decline in ADL restriction by ossification, distrust of others, acceptance of the rare disease, invention for improvement in QOL etc.; 9 categories in adolescence; the ADL decline by ossification, the deterioration of condition by ossification, care for the injury prevention, notification of the name of a disease, invention for QOL improvement, the decision to become independent, etc.

Conclusions FOP children are now dependent on their family, they hope to live their own life in future. It is critical for nursing care to consider the ways keep them from injury and infection.

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