Experiences of mothers caring for children with rare diseases in Turkey

BAYRAKTAR S., AYDIN A., Karaca M., Balcı M. C., Gökçay G. F., Göktepe N.

Journal of Genetic Counseling, 2024 (SCI-Expanded) identifier identifier

  • Yayın Türü: Makale / Tam Makale
  • Basım Tarihi: 2024
  • Doi Numarası: 10.1002/jgc4.1978
  • Dergi Adı: Journal of Genetic Counseling
  • Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Social Sciences Citation Index (SSCI), Scopus, ASSIA, CINAHL, MEDLINE, Psycinfo
  • Anahtar Kelimeler: care, children, experiences, mother, needs, rare disease
  • İstanbul Üniversitesi Adresli: Evet

Özet

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.