Factors Supporting Autonomy Development in Individuals with Spina Bifida: A Qualitative Study

Yıl 2024, Cilt: 21 Sayı: 6, 407 - 420

Canan Aydoğan Tor , Nilgün Küçükkaraca

https://doi.org/10.26466/opusjsr.1536888

Öz

Studies have shown that autonomy is a strong determinant of psychological well-being and social participation for individuals with disabilities. However, the factors influencing the development of autonomy in individuals with spina bifida have not yet been elucidated. This study aimed to explore the life experiences of adults with spina bifida that influence them in building their autonomy. In-depth, semi-structured interviews were conducted with nine people diagnosed with spina bifida using the phenomenological research method, which is a qualitative research approach. As a result of the interviews, it was concluded that assuming responsibility, self-confidence and close relationships contributed to the participants’ autonomy development. It has also been found that female participants faced additional challenges related to their gender when developing their autonomy. We expect that this qualitative study will contribute to a better understanding of the factors supporting autonomy development in youth with spina bifida. In particular, families and professionals working in this field should focus on helping children and adolescents with spina bifida to assume more responsibility at an age-appropriate level and participate in activities to increase their self-confidence. Supportive services should be developed to ensure strong family and peer relationships.

Anahtar Kelimeler

Autonomy, spina bifida, qualitative, empowerment, well-being

Etik Beyan

We confirm that neither the manuscript nor any parts of its content are currently under consideration for publication with or published in another journal. All authors have approved the manuscript and agree with its submission to OPUS Journal of Society Research.

Spina Bifidalı Bireylerde Özerklik Gelişimini Destekleyen Faktörler: Nitel Bir Çalışma

Öz

Çalışmalar, engelli bireylerin psikolojik iyi oluşu ve sosyal katılımı için özerkliğin önemli bir belirleyici olduğunu göstermektedir. Ancak, spina bifidalı bireylerde özerklik gelişimini etkileyen faktörler henüz tam olarak aydınlatılamamıştır. Bu çalışma, spina bifidalı yetişkinlerin özerkliklerini inşa etmelerinde etkili olan yaşam deneyimlerini incelemeyi amaçlamaktadır. Nitel bir araştırma yaklaşımı olan fenomenolojik araştırma yöntemi kullanılarak spina bifida tanısı almış dokuz katılımcı ile derinlemesine, yarı yapılandırılmış görüşmeler gerçekleştirilmiştir. Bulgular, sorumluluk alma, özgüven ve yakın ilişkilerin özerklik gelişimine katkıda bulunduğunu ortaya koymuştur. Ayrıca, kadın katılımcıların özerkliklerini geliştirirken cinsiyetlerine bağlı olarak ek zorluklarla karşılaştığı tespit edilmiştir. Bu çalışmanın, spina bifidalı gençlerde özerklik gelişimini destekleyen faktörlerin daha iyi anlaşılmasına katkı sağlamasını umuyoruz. Aileler ve profesyoneller, çocukların yaşlarına uygun sorumluluklar almasına ve özgüvenlerini artırıcı faaliyetlere katılmalarına odaklanmalıdır. Aynı zamanda, güçlü aile ve akran ilişkilerini destekleyecek hizmetlerin geliştirilmesi önerilmektedir.

Anahtar Kelimeler

özerklik, spina bifida, nitel araştırma, güçlendirme, iyi oluş

Kaynakça

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