Experiences of mothers caring for children with rare diseases in Turkey

被引：0

作者：

Bayraktar, Sema ^{[1
]}

Aydin, Ayfer ^{[1
]}

Karaca, Meryem ^{[2
]}

Balci, Mehmet Cihan ^{[2
]}

Gokcay, Guelden Fatma ^{[2
]}

Goektepe, Neval ^{[3
]}

机构：

[1] Istanbul Univ, Fac Nursing, Istanbul, Turkiye

[2] Istanbul Univ, Istanbul Fac Med, Istanbul, Turkiye

[3] Istanbul Univ, Istanbul Fac Med Hosp, Istanbul, Turkiye

来源：

JOURNAL OF GENETIC COUNSELING | 2024年

关键词：

care; children; experiences; mother; needs; rare disease; QUALITATIVE CONTENT-ANALYSIS; CARE;

D O I：

10.1002/jgc4.1978

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

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.

引用

页数：11

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