Spinal Müsküler Atrofi Hastalarının Ailelerinin Yaşadıkları Sorunlar ve Güçlükler: Nitel Bir Araştırma

Öz

Bu çalışma, Spinal Müsküler Atrofi (SMA) tanısı konulan çocukların ebeveynlerinin tanı sonrası yaşadıkları psikososyal, ekonomik ve kurumsal güçlükleri derinlemesine incelemeyi amaçlamaktadır. Bu amaçla nitel araştırma yönteminin benimsendiği ve fenomenolojik yaklaşıma dayalı olarak tasarlanan çalışmada, kartopu örnekleme yöntemiyle belirlenen 13 ebeveynle derinlemesine görüşmeler yapılmıştır. Veriler, MAXQDA 2024 yazılımı aracılığıyla tematik analiz yöntemiyle değerlendirilmiştir. Bulgular, ebeveynlerin tanı sonrası psikolojik zorlanmalar yaşadıklarını, sosyal destek yetersizliğiyle karşılaştıklarını, ekonomik güçlükler deneyimlediklerini, toplumsal damgalanma ve sosyal dışlanmaya maruz kaldıklarını, evde bakım sorumluluğu nedeniyle fiziksel ve duygusal olarak zorlandıklarını ve sağlık hizmetleri ile bilgiye erişimde kurumsal engellerle karşılaştıklarını göstermiştir. Araştırma, SMA’nın aile yaşamı üzerindeki çok boyutlu etkilerine dikkat çekmekte ve destekleyici sosyal politika ile aile odaklı sosyal hizmet uygulamalarına duyulan ihtiyacı vurgulamaktadır.

Anahtar Kelimeler

• Spinal müsküler atrofi
• nadir hastalıklar
• psikososyal güçlükler
• sosyal destek
• ekonomik güçlükler.

Problems and Challenges Experienced by Families of Patients with Spinal Muscular Atrophy: A Qualitative Study

Öz

This study aims to provide an in-depth examination of the psychosocial, economic, and institutional difficulties faced by parents of children diagnosed with Spinal Muscular Atrophy (SMA) in the post-diagnosis period. To this end, the study adopted a qualitative research design based on a phenomenological approach. In-depth interviews were conducted with 13 parents selected through snowball sampling. The data were analyzed through thematic analysis using MAXQDA 2024 software. The findings showed that, after diagnosis, parents experienced psychological distress, received insufficient social support, faced economic hardship, were exposed to social stigmatization and exclusion, experienced physical and emotional strain due to home care responsibilities, and encountered institutional barriers to accessing healthcare services and information. The study draws attention to the multidimensional effects of SMA on family life and emphasizes the need for supportive social policies and family-centered social work practices.

Anahtar Kelimeler

• Spinal muscular atrophy
• rare diseases
• psychosocial difficulties
• social support
• economic difficulties

Kaynakça

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