NURSING CARE AND EDUCATION OF THE FAMILY OF A CHILD WITH DUCHENNE MUSCULAR DYSTROPHY

Abstract

Some individuals suffer from a little-known, rare genetic disease called Duchenne muscular dystrophy. In Poland, approximately 40 boys are born with this condition every year. Therefore, paying attention to people with this rare disease was the motivation to undertake a qualitative study in order to identify the tasks of the nurse in terms of medical care and education of both the patient himself and his family, based on a case study. An interview technique, observation and analysis of medical records were used to develop the case study. As a result, the 2023 research material necessary for the case study was collected, which included: information on the patient’s medical history, observation of the patient, the problems faced each day, the planned goals of assistance, the nursing interventions and their evaluation, the time of their implementation and their effects. Based on the study, it should be concluded that caring for a person with Duchenne muscular dystrophy presents a number of challenges. In such a case, a holistic approach to the patient is required that encompasses all areas of life and all aspects of the disease. The nurse not only deals with medical problems, but also provides support with mental, social and spiritual problems. The patient also needs care and support from the family, and education is helpful in preparing them to fulfil these tasks.

Keywords

• duchenne muscular dystrophy
• nurses
• family
• patient
• care