Türkiye'de Spinal Müsküler Atrofi Hastası Bir Çocuğa Ebeveynlik Yapmak: Annelerin ve Babaların Deneyimleri

Öz

Amaç: Bu çalışmanın amacı, Spinal Musküler Atrofi tanısı almış çocukların ebeveynlerinin deneyimlerini ve gereksinimlerini değerlendirmektir. Yöntem: Çalışma, nitel araştırma desenlerinden fenomenolojik çalışma olarak tasarlanmıştır. Veriler Haziran-Aralık 2024 tarihleri arasında toplanmıştır. Araştırmanın evrenini/örneklemini bir Hastaneye başvuran Spinal Musküler Atrofi tanılı çocukların ebeveynleri oluşturmuştur. Bu doğrultuda 8 anne ve 8 baba olmak üzere 16 ebeveynle görüşülmüştür. Veriler, araştırmacı tarafından hazırlanan demografik veri formu ve yarı yapılandırılmış görüşme formu kullanılarak yüz yüze görüşmeler ve ses kayıtları yoluyla toplanmıştır. Bulgular: Temalar; aile-iş ilişkileri, ekonomik güçlükler, geleceğe yönelik plan ve beklentiler, sağlık hizmetleri ve destek ile tanı süreci olarak belirlenmiştir. Aynı zamanda aileler yalnızca tedaviye değil, koruyucu önlemlere ve toplum farkındalığının artırılmasına da gereksinim olduğunu vurgulamıştır. Sonuç: Nadir hastalıkların tedavisinde tıbbi müdahalenin ötesine geçen; psikolojik, sosyoekonomik ve etik boyutları dikkate alan multidisipliner ve bütüncül bir yaklaşım benimsenmelidir.

Anahtar Kelimeler

• ebeveynler
• hemşirelik
• nadir hastalıklar
• spinal müsküler atrofi

Parenting a Child with Spinal Muscular Atrophy in Türkiye: Experiences of Mothers and Fathers

Öz

Objective: The purpose of the article is to evaluate the experiences and needs of parents of children diagnosed with Spinal Muscular Atrophy. Methods: Research design: the article was designed as a phenomenological study, one of the qualitative research designs. Data were collected between June and December 2024. The study population/sample consisted of the parents of Spinal Muscular Atrophy diagnosed children who applied to a Hospital. Accordingly, 16 parents, 8 mothers and 8 fathers were interviewed. Data were collected through face-to-face interviews with a demographic data form and a semi-structured interview form prepared by the researcher and through audiotapes. Results: These themes were determined as family-work relationships, economic difficulties, future plans and expectations, health care and support, and the diagnostic process. At the same time, families emphasized the need for not only treatment but also preventive measures and increased public awareness. Conclusion: A multidisciplinary and holistic approach to rare disease treatment should be considered beyond medical intervention, taking psychological, socio-economic, and ethical implications into account.

Anahtar Kelimeler

• nursing
• parents
• rare diseases
• spinal muscular atrophy

Kaynakça

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