Department of Nursing, Cathay General Hospital Hsinchu, Hsinchu, Taiwan.
Department of Pediatrics, Taipei Veterans General Hospital, Taipei, Taiwan; School of Medicine, National Yang Ming Chiao Tung University, Taipei, Taiwan.
J Pediatr Nurs. 2024 Nov-Dec;79:24-31. doi: 10.1016/j.pedn.2024.08.008. Epub 2024 Aug 26.
To explore the lived experiences of mothers caring for school-age children with Pompe disease.
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.
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.
This study highlights the complex experiences of mothers caring for children with Pompe disease, emphasizing the importance of comprehensive support.
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.
探讨照顾学龄期庞贝病患儿的母亲的生活体验。
采用描述现象学方法的定性研究。2022 年 10 月至 12 月，通过台湾庞贝氏症病友协会，对 10 名被诊断患有庞贝病的学龄期儿童的母亲进行了半结构式访谈。采用科莱兹的现象学方法进行数据分析。
研究确定了母亲照顾经验的五个主题：1. 坚定的育儿信念；2. 以孩子为中心的方法；3. 关注同伴关系和应对策略；4. 学习、治疗和康复的整合；5. 接受和应对生活挑战。母亲们平衡了患有庞贝病的孩子的教育、治疗和康复，提供了照顾经验的视角。
本研究强调了照顾患有庞贝病儿童的母亲的复杂经历，强调了全面支持的重要性。
了解母亲的观点可以帮助医疗保健专业人员理解患有庞贝病儿童的家庭所面临的挑战，并能够制定策略为这些儿童及其家庭提供全面的心理支持，以改善心理健康结果。提高医疗保健专业人员和社会对儿童患有庞贝病及其家庭所面临的独特挑战的认识，有助于以知情和富有同情心的方式应对这些挑战。
