A Qualitative Descriptive Study Exploring the Systemic Challenges of Caring for Children With Medical Complexity at Home

IF 2.5 4区医学 Q2 HEALTH POLICY & SERVICES

Journal of Pediatric Health Care Pub Date : 2025-01-01 DOI:10.1016/j.pedhc.2024.08.010

David Geyer PhD, RN, CPNP-PC, Jane M. Flanagan PhD, RN, AHN-BC, ANP-BC, FAAN, Brittney van de Water PhD, RN, CPNP-PC, Susan McCarthy, Judith A. Vessey PhD, MBA, RN, FAAN

{"title":"A Qualitative Descriptive Study Exploring the Systemic Challenges of Caring for Children With Medical Complexity at Home","authors":"David Geyer PhD, RN, CPNP-PC, Jane M. Flanagan PhD, RN, AHN-BC, ANP-BC, FAAN, Brittney van de Water PhD, RN, CPNP-PC, Susan McCarthy, Judith A. Vessey PhD, MBA, RN, FAAN","doi":"10.1016/j.pedhc.2024.08.010","DOIUrl":null,"url":null,"abstract":"<div><h3>Introduction</h3><div>The purpose of this study is to explore challenges within the home care system encountered by parental caregivers of children with medical complexity in Massachusetts.</div></div><div><h3>Method</h3><div>A qualitative descriptive study was completed with 11 parental caregivers interviewed.</div></div><div><h3>Results</h3><div>Using conventional content analysis of transcripts, three themes emerged: (1) lack of discharge preparedness causes emotional distress, (2) care becomes increasingly complex creating new unanticipated challenges, and (3) psychological toll of parents assuming provider role.</div></div><div><h3>Discussion</h3><div>Navigating a variety of complex systemic challenges with minimal preparation or support contributes to an overall feeling of parental caregiver burnout. Additionally, mental health supports for parental caregivers are lacking, further exacerbating the negative impact of these challenges. Future work should focus on research, advocacy, and system reform that ensures parental caregivers receive necessary supports to care for children within a sustainable and supportive home care model. Nurses across the profession are in unique position to facilitate this change.</div></div>","PeriodicalId":50094,"journal":{"name":"Journal of Pediatric Health Care","volume":"39 1","pages":"Pages 24-32"},"PeriodicalIF":2.5000,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Pediatric Health Care","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0891524524002426","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEALTH POLICY & SERVICES","Score":null,"Total":0}

引用次数: 0

Abstract

Introduction

The purpose of this study is to explore challenges within the home care system encountered by parental caregivers of children with medical complexity in Massachusetts.

Method

A qualitative descriptive study was completed with 11 parental caregivers interviewed.

Results

Using conventional content analysis of transcripts, three themes emerged: (1) lack of discharge preparedness causes emotional distress, (2) care becomes increasingly complex creating new unanticipated challenges, and (3) psychological toll of parents assuming provider role.

Discussion

Navigating a variety of complex systemic challenges with minimal preparation or support contributes to an overall feeling of parental caregiver burnout. Additionally, mental health supports for parental caregivers are lacking, further exacerbating the negative impact of these challenges. Future work should focus on research, advocacy, and system reform that ensures parental caregivers receive necessary supports to care for children within a sustainable and supportive home care model. Nurses across the profession are in unique position to facilitate this change.

查看原文本刊更多论文

一项定性描述性研究，探索在家中照顾病情复杂儿童所面临的系统性挑战。

导言：本研究旨在探讨马萨诸塞州医疗复杂儿童的父母照顾者在家庭护理系统中遇到的挑战：方法：完成了一项定性描述性研究，对 11 名父母照顾者进行了访谈：结果：通过对记录誊本进行常规内容分析，得出了三个主题：（1）缺乏出院准备导致情绪困扰；（2）护理变得越来越复杂，带来了新的意料之外的挑战；（3）父母承担提供者角色造成的心理伤害：讨论：在极少准备或支持的情况下应对各种复杂的系统性挑战，会导致父母照顾者的整体倦怠感。此外，父母照顾者缺乏心理健康支持，进一步加剧了这些挑战的负面影响。未来的工作应侧重于研究、宣传和系统改革，以确保父母照顾者获得必要的支持，从而在可持续和支持性的家庭护理模式下照顾儿童。整个行业的护士都处于推动这一变革的独特地位。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Journal of Pediatric Health Care NURSING-PEDIATRICS

CiteScore

3.40

自引率

10.70%

发文量

140

审稿时长

24 days

期刊介绍： The Journal of Pediatric Health Care, the official journal of the National Association of Pediatric Nurse Practitioners, provides scholarly clinical information and research regarding primary, acute and specialty health care for children of newborn age through young adulthood within a family-centered context. The Journal disseminates multidisciplinary perspectives on evidence-based practice and emerging policy, advocacy and educational issues that are of importance to all healthcare professionals caring for children and their families.