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 | 2025年 / 34卷 / 02期

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

共 50 条

[31] Living with a birthmark: Phenomenology of prematurity for mothers in Turkey
Tastekin, Ezgi
Bayhan, Pinar
JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES, 2023, 69 : 77 - 85
[32] Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays
Zurynski, Yvonne
Deverell, Marie
Dalkeith, Troy
Johnson, Sandra
Christodoulou, John
Leonard, Helen
Elliott, Elizabeth J.
ORPHANET JOURNAL OF RARE DISEASES, 2017, 12
[33] From Knowing Nothing to Knowing What, How and Now: Parents' Experiences of Caring for their Children With Congenital Adrenal Hyperplasia
Lundberg, Tove
Lindstrom, Anders
Roen, Katrina
Hegarty, Peter
JOURNAL OF PEDIATRIC PSYCHOLOGY, 2017, 42 (05) : 520 - 529
[34] Mothers' experiences of toilet training children with intellectual disabilities: a qualitative study
Ozsavran, Musa
Kurt, Aylin
Dinc, Fatma
INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES, 2025, 71 (03) : 461 - 471
[35] The psychological experiences of foster mothers of adolescent children
Mosimege, Keolebogile Betty
Snyders, Frederik
JOURNAL OF PSYCHOLOGY IN AFRICA, 2018, 28 (02) : 152 - 156
[36] Caring for children with complex emotional and psychological disorders: experiences of nurses in a rural paediatric unit
Reid-Searl, Kerry
Dwyer, Trudy
Happell, Brenda
Moxham, Lorna
Kahl, Julie
Morris, Jodie
Wheatland, Narelle
JOURNAL OF CLINICAL NURSING, 2009, 18 (24) : 3441 - 3449
[37] Being the Pillar for Children with Rare Diseases-A Systematic Review on Parental Quality of Life
Boettcher, Johannes
Boettcher, Michael
Wiegand-Grefe, Silke
Zapf, Holger
INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH, 2021, 18 (09)
[38] Mothers with young children: Caring for the self through the physical activity space
Lloyd, Kathy
O'Brien, Wendy
Riot, Caroline
LEISURE SCIENCES, 2016, 38 (02) : 85 - 99
[39] Navigating the US health insurance landscape for children with rare diseases: a qualitative study of parents' experiences
Pasquini, Tai L. S.
Goff, Sarah L.
Whitehill, Jennifer M.
ORPHANET JOURNAL OF RARE DISEASES, 2021, 16 (01)
[40] My role and responsibility: mothers' perspectives on overload in caring for children with cancer
Vieira, Aretuza Cruz
da Rocha Cunha, Mariana Lucas
REVISTA DA ESCOLA DE ENFERMAGEM DA USP, 2020, 54

← 1 2 3 4 5 →