The Difficulties and Coping Experiences of Familiesof Children with Spinal Muscular Atrophy, towards the Diagnosis and Treatment Process: A Phenomenological Study”
Yazarlar (2)
Doç. Dr. Sevda UZUN
Gümüşhane Üniversitesi, Türkiye
| Makale Türü | Özgün Makale (Diğer hakemli uluslarası dergilerde yayınlanan tam makale) | ||
| Dergi Adı | International Journal of Caring Sciences | ||
| Dergi ISSN | 1791-5201 | ||
| Dergi Tarandığı Indeksler | INDEX COPERNICUS | ||
| Makale Dili | İngilizce | Basım Tarihi | 08-2025 |
| Cilt / Sayı / Sayfa | 18 / 2 / 911–927 | DOI | – |
| Özet |
| Objective: The aim of this study was to evaluate the difficulties and coping experiences of families with children with SMA (spinal muscular atrophy) in using a phenomenological approach. Material-Method: This qualitative study was conducted with semi-structured in-depth interviews via whatsapp with 35 parents with children with SMA (spinal muscular atrophy) living in Turkey. Interviews continued until data saturation was achieved. All interviews were audio recorded and then transcribed. The data were analyzed using Colaizzi's phenomenological analysis method. The study was conducted and reported according to the COREQ checklist.Findings: Data analysis revealed two themes (psychosocial problems experienced and difficulties and coping experiences of parents) and five sub-themes (mental, social, physical, difficulties and coping). Conclusion: It was determined that parents experienced many different psychosocial problems due to SMA disease. In addition, it has been determined that parents are partially or completely isolated from the society due to the burden of care, they experience disruptions in communicating with their family and close circles, and their lives are negatively affected. |
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