{"title":"The lived experience of mothers caring for school-age children with Pompe disease: A qualitative study","authors":"","doi":"10.1016/j.pedn.2024.08.008","DOIUrl":null,"url":null,"abstract":"<div><h3>Purpose</h3><p>To explore the lived experiences of mothers caring for school-age children with Pompe disease.</p></div><div><h3>Design and methods</h3><p>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.</p></div><div><h3>Results</h3><p>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.</p></div><div><h3>Conclusions</h3><p>This study highlights the complex experiences of mothers caring for children with Pompe disease, emphasizing the importance of comprehensive support.</p></div><div><h3>Practice implications</h3><p>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.</p></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":null,"pages":null},"PeriodicalIF":2.1000,"publicationDate":"2024-08-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Pediatric Nursing-Nursing Care of Children & Families","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0882596324003087","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"NURSING","Score":null,"Total":0}
引用次数: 0
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.
期刊介绍:
Official Journal of the Society of Pediatric Nurses and the Pediatric Endocrinology Nursing Society (PENS)
The Journal of Pediatric Nursing: Nursing Care of Children and Families (JPN) is interested in publishing evidence-based practice, quality improvement, theory, and research papers on a variety of topics from US and international authors. JPN is the official journal of the Society of Pediatric Nurses and the Pediatric Endocrinology Nursing Society. Cecily L. Betz, PhD, RN, FAAN is the Founder and Editor in Chief.
Journal content covers the life span from birth to adolescence. Submissions should be pertinent to the nursing care needs of healthy and ill infants, children, and adolescents, addressing their biopsychosocial needs. JPN also features the following regular columns for which authors may submit brief papers: Hot Topics and Technology.