A Letter from the Mother of a Child with Jeune Syndrome: A Qualitative Analysis
CLINICAL PEDIATRICS, cilt.65, sa.3, ss.373-380, 2026 (SCI-Expanded, Scopus)
- Yayın Türü: Makale / Tam Makale
- Cilt numarası: 65 Sayı: 3
- Basım Tarihi: 2026
- Doi Numarası: 10.1177/00099228251394489
- Dergi Adı: CLINICAL PEDIATRICS
- Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Scopus, CINAHL, EMBASE, Public Affairs Index
- Sayfa Sayıları: ss.373-380
- Anahtar Kelimeler: Jeune syndrome, home care, mother experience, motherhood
- Dokuz Eylül Üniversitesi Adresli: Evet
Özet
This study explored a mother's experience of caring for her child with Jeune syndrome through a phenomenological qualitative approach using letter writing. Data were analyzed inductively, and four major themes emerged: challenges and successes in medical treatment, emotional resilience and family dynamics, overcoming developmental and educational barriers, and hopes and aspirations for the future. The mother described interactions with health care providers, her child's surgeries, treatments, and postoperative care. She emphasized the importance of family support, emotional struggles, and concerns about her child's future health. Developmental delays, social difficulties, and limited access to formal education were noted. Future plans involved tracheostomy closure, dietary improvements, and genetic testing. Despite these challenges, the mother remained hopeful, emphasizing her child's postoperative recovery and potential for greater independence. This analysis highlights the struggles, victories, and aspirations of a mother facing a rare disease and offers inspiration to others in similar circumstances.