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, SSCI, Scopus) identifier identifier identifier

  • Publication Type: Article / Article
  • Volume:
  • Publication Date: 2024
  • Doi Number: 10.1002/jgc4.1978
  • Journal Name: Journal of genetic counseling
  • Journal Indexes: Science Citation Index Expanded (SCI-EXPANDED), Social Sciences Citation Index (SSCI), Scopus, ASSIA, CINAHL, MEDLINE, Psycinfo
  • Keywords: care, children, experiences, mother, needs, rare disease
  • Istanbul University Affiliated: Yes

Abstract

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.