Kinga Pozniak , Gillian King , Elizabeth Marie Chambers , Sarah Wellman-Earl , Olaf Kraus de Camargo , Rachel Teplicky , Peter Rosenbaum
{"title":"业内人士眼中以家庭为中心的服务：身为父母的医疗服务提供者讲述在儿童健康领域接受和提供医疗服务的情况","authors":"Kinga Pozniak , Gillian King , Elizabeth Marie Chambers , Sarah Wellman-Earl , Olaf Kraus de Camargo , Rachel Teplicky , Peter Rosenbaum","doi":"10.1016/j.ridd.2024.104746","DOIUrl":null,"url":null,"abstract":"<div><h3>Background</h3><p>When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions.</p></div><div><h3>Aims</h3><p>This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery.</p></div><div><h3>Methods and procedures</h3><p>A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis.</p></div><div><h3>Results</h3><p>For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized.</p></div><div><h3>Conclusions</h3><p>The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.9000,"publicationDate":"2024-04-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224000787/pdfft?md5=f5e4d33cf224397e1e84f26de457789c&pid=1-s2.0-S0891422224000787-main.pdf","citationCount":"0","resultStr":"{\"title\":\"Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health\",\"authors\":\"Kinga Pozniak , Gillian King , Elizabeth Marie Chambers , Sarah Wellman-Earl , Olaf Kraus de Camargo , Rachel Teplicky , Peter Rosenbaum\",\"doi\":\"10.1016/j.ridd.2024.104746\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Background</h3><p>When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions.</p></div><div><h3>Aims</h3><p>This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery.</p></div><div><h3>Methods and procedures</h3><p>A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis.</p></div><div><h3>Results</h3><p>For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized.</p></div><div><h3>Conclusions</h3><p>The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service.</p></div>\",\"PeriodicalId\":51351,\"journal\":{\"name\":\"Research in Developmental Disabilities\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.9000,\"publicationDate\":\"2024-04-27\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.sciencedirect.com/science/article/pii/S0891422224000787/pdfft?md5=f5e4d33cf224397e1e84f26de457789c&pid=1-s2.0-S0891422224000787-main.pdf\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Research in Developmental Disabilities\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S0891422224000787\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"EDUCATION, SPECIAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Research in Developmental Disabilities","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0891422224000787","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}
Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health
Background
When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions.
Aims
This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery.
Methods and procedures
A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis.
Results
For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized.
Conclusions
The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service.
期刊介绍：
Research In Developmental Disabilities is aimed at publishing original research of an interdisciplinary nature that has a direct bearing on the remediation of problems associated with developmental disabilities. Manuscripts will be solicited throughout the world. Articles will be primarily empirical studies, although an occasional position paper or review will be accepted. The aim of the journal will be to publish articles on all aspects of research with the developmentally disabled, with any methodologically sound approach being acceptable.
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