Experiences of mothers caring for children with rare diseases in Turkey

Experiences of mothers caring for children with rare diseases in Turkey

Rare diseases (RDs), important for children and families, have been poorly studied in Turkey. This study aimed to describe the experiences and needs of mothers whose children have RDs from the perspectives of their mothers. In-depth interviews were held with the mothers of 16 children followed up in...

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Veröffentlicht in:Journal of genetic counseling 2024-09
Hauptverfasser: Bayraktar, Sema, Aydın, Ayfer, Karaca, Meryem, Balcı, Mehmet Cihan, Gökçay, Gülden Fatma, Göktepe, Neval
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container_title Journal of genetic counseling
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creator Bayraktar, Sema
Aydın, Ayfer
Karaca, Meryem
Balcı, Mehmet Cihan
Gökçay, Gülden Fatma
Göktepe, Neval
description Rare diseases (RDs), important for children and families, have been poorly studied in Turkey. This study aimed to describe the experiences and needs of mothers whose children have RDs from the perspectives of their mothers. In-depth interviews were held with the mothers of 16 children followed up in the Pediatric Nutrition and Metabolism Outpatient Clinic of a University Hospital. The data were analyzed using thematic analysis procedures. The experiences of mothers caring for children with RDs were categorized into three main themes: (1) challenges with treatment, (2) burden of care, and (3) expectations. This study demonstrated that mothers of children with RDs experienced many common challenges in caregiving.
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title Experiences of mothers caring for children with rare diseases in Turkey
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