{"title":"Caring for the child with a tracheostomy through the eyes of their caregiver: A photovoice study","authors":"","doi":"10.1016/j.pedn.2024.08.024","DOIUrl":null,"url":null,"abstract":"<div><h3>Purpose</h3><p>This qualitative descriptive study aimed to explore the daily experiences of caregivers of children with medical complexity with a tracheostomy at home.</p></div><div><h3>Methods</h3><p>This study used photovoice, a participatory action research methodology. Adult English-speaking caregivers of children with a tracheostomy, living in Texas, with access to a smartphone were recruited. Photographs taken by participants and an interview guide were used to guide semi-structured interviews with caregivers.</p></div><div><h3>Results</h3><p>Eight participants were recruited. After analyzing photographs and caregiver interviews, four main themes were identified: role transition, daily challenges, finding support, and thriving in the new normal.</p></div><div><h3>Conclusions</h3><p>Caregivers take on multiple roles, including providing medical care, advocating for their children, and educating others. While facing emotional challenges such as guilt, fear, and exhaustion, caregivers rely on external support systems, emphasizing the need for nurses and healthcare providers to provide comprehensive support and improve the accessibility of home nursing services.</p></div><div><h3>Practice implications</h3><p>The findings of this study can inform nurse-led interventions and advocacy efforts aimed at supporting marginalized children with medical complexity with a tracheostomy and their families. These efforts may include enhancing communication and collaboration between families, healthcare workers, and the public, providing comprehensive, proactive support for caregivers, and improving access to home nursing services.</p></div>","PeriodicalId":48899,"journal":{"name":"Journal of Pediatric Nursing-Nursing Care of Children & Families","volume":null,"pages":null},"PeriodicalIF":2.1000,"publicationDate":"2024-08-29","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/S0882596324003336","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
This qualitative descriptive study aimed to explore the daily experiences of caregivers of children with medical complexity with a tracheostomy at home.
Methods
This study used photovoice, a participatory action research methodology. Adult English-speaking caregivers of children with a tracheostomy, living in Texas, with access to a smartphone were recruited. Photographs taken by participants and an interview guide were used to guide semi-structured interviews with caregivers.
Results
Eight participants were recruited. After analyzing photographs and caregiver interviews, four main themes were identified: role transition, daily challenges, finding support, and thriving in the new normal.
Conclusions
Caregivers take on multiple roles, including providing medical care, advocating for their children, and educating others. While facing emotional challenges such as guilt, fear, and exhaustion, caregivers rely on external support systems, emphasizing the need for nurses and healthcare providers to provide comprehensive support and improve the accessibility of home nursing services.
Practice implications
The findings of this study can inform nurse-led interventions and advocacy efforts aimed at supporting marginalized children with medical complexity with a tracheostomy and their families. These efforts may include enhancing communication and collaboration between families, healthcare workers, and the public, providing comprehensive, proactive support for caregivers, and improving access to home nursing services.
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.