Evaluation of the Problems of Families in the Care of Children with Duchenne Muscular Dystrophy: A Qualitative Study Duchenne Musküler Distrofili Çocukların Bakımında Ailelerin Yaşadıkları Sorunların Değerlendirilmesi: Bir Nitel Çalışma
Journal of Nursology, cilt.25, sa.4, ss.208-216, 2022 (Scopus)
- Yayın Türü: Makale / Tam Makale
- Cilt numarası: 25 Sayı: 4
- Basım Tarihi: 2022
- Doi Numarası: 10.5152/janhs.2022.993607
- Dergi Adı: Journal of Nursology
- Derginin Tarandığı İndeksler: Scopus
- Sayfa Sayıları: ss.208-216
- Anahtar Kelimeler: Family caregiver, Duchenne muscular dystrophy, qualitative research
- Sağlık Bilimleri Üniversitesi Adresli: Evet
Özet
Objective: This study aims to evaluate the problems experienced by families relating to the care of children with Duchenne muscular dystrophy. Methods: The study is qualitative research in which the interpretive phenomenology design is used. Ten participants who were reached using the purposive sampling method were interviewed using a semi-structured form. Content analysis, phenomenological analysis, and descriptive analysis techniques were used to analyze the data. Results: In this study, 4 main themes and 14 sub-themes are obtained. The main themes that emerged as a result of this research are as follows: the way from diagnosis to acceptance, the concept of care, the reflections on having an ill child in life, and the education need. Although the problems and needs of the families experienced during the disease process may vary depending on many factors, it has been seen that the disease process is a difficult journey for families. Conclusion: Evaluating the needs and problems of families, starting from the diagnosis stage, can guide the determination of support programs to be offered to families.