Home care needs of children with neuromuscular diseases and the difficulties their families face

Abstract

Objective: To identify home care needs of children with neuromuscular diseases and the difficulties their families face, in Turkey. Method: A descriptive study with a research sample composed of 103 families of children with neuromuscular diseases. The questionnaire form was developed by the researcher and used to collect data, including questions about physical and psycho-social problems; home care needs of children and the family burden at home care. Data was collected within 8 months. For analyzing the data, percentage distributions and Chi-square (Pearson, Fisher) tests were used. Results: Among the children, 17.5% were unable to use lower extremities and 68.9% were unable to use lower and upper limbs; 48 (46.6%) used wheelchairs and/or orthesis; 68% did not practice physical exercise; 18.4% of them were receiving respiration therapy. Almost all of the children had some depressive symptoms. Among the relatives, 87.6% had depressive symptoms, 85.4% presented physical problems and 70.8% referred social isolation. Half of them had problems with their spouses and other children; 51.5% of the participants did not have any emotional support source. Conclusion: In Turkey, there is not an effective home care system, rehabilitation and polyclinic services which include emotional and social support. However, findings of this study demonstrate the needs of families and children for such services and how they are important for increasing their quality of life.