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The lived experience of mothers caring for school-age children with Pompe disease: A qualitative study.
Cheng, Ju-Chun; Yang, Chia-Feng; Chou, Cheng-Chen; Shu, Ying-Mei; Liu, Pei-Ching; Lo, Kao-Wen; Chen, Chi-Wen.
Afiliación
  • Cheng JC; Department of Nursing, Cathay General Hospital Hsinchu, Hsinchu, Taiwan.
  • Yang CF; Department of Pediatrics, Taipei Veterans General Hospital, Taipei, Taiwan; School of Medicine, National Yang Ming Chiao Tung University, Taipei, Taiwan.
  • Chou CC; Institute of Community Health Care, College of Nursing, National Yang Ming Chiao Tung University, Taipei, Taiwan. Electronic address: ccchou@nycu.edu.tw.
  • Shu YM; Department of Nursing, Chang Gung University of Science and Technology, Taoyuan, Taiwan. Electronic address: inmeishu@mail.cgust.edu.tw.
  • Liu PC; Department of Nursing, College of Nursing, National Yang Ming Chiao Tung University, Taipei, Taiwan. Electronic address: ressy@nycu.edu.tw.
  • Lo KW; Department of Nursing, Chang Gung University of Science and Technology, Taoyuan, Taiwan. Electronic address: kwlo@mail.cgust.edu.tw.
  • Chen CW; Department of Nursing, College of Nursing, National Yang Ming Chiao Tung University, Taipei, Taiwan. Electronic address: chiwenchen@nycu.edu.tw.
J Pediatr Nurs ; 79: 24-31, 2024 Aug 26.
Article en En | MEDLINE | ID: mdl-39190967
ABSTRACT

PURPOSE:

To explore the lived experiences of mothers caring for school-age children with Pompe disease. DESIGN AND

METHODS:

A qualitative study using a descriptive phenomenology approach. Semi-structured interviews were conducted from October to December 2022 with 10 mothers of school-age children diagnosed with Pompe disease, which were identified through the Taiwan Pompe Disease Association. Colaizzi's phenomenological method was employed for data analysis.

RESULTS:

The study identified five themes in the caregiving experiences of mothers 1. unwavering parenting beliefs; 2. child-centric approach; 3. focus on peer relationships and coping strategies; 4. integration of learning, treatment, and rehabilitation; and 5. embracing and navigating life's challenges. Mothers balanced education, treatment, and rehabilitation for their children with Pompe disease, offering perspectives into the caregiving experience.

CONCLUSIONS:

This study highlights the complex experiences of mothers caring for children with Pompe disease, emphasizing the importance of comprehensive support. PRACTICE IMPLICATIONS Insights into the perspectives of mothers can aid health-care professionals in understanding the challenges faced by families with children diagnosed with Pompe disease and can enable the development of strategies for providing comprehensive psychological support to improve mental health outcomes for these children and their families. Increased awareness among health-care professionals and in the society leads to an informed and empathetic approach to addressing the unique challenges faced by children with Pompe disease and their families.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: J Pediatr Nurs Asunto de la revista: ENFERMAGEM / PEDIATRIA Año: 2024 Tipo del documento: Article País de afiliación: Taiwán Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: J Pediatr Nurs Asunto de la revista: ENFERMAGEM / PEDIATRIA Año: 2024 Tipo del documento: Article País de afiliación: Taiwán Pais de publicación: Estados Unidos