学习障碍儿童及其家庭获得医院护理的平等机会:一项混合方法研究

K. Oulton, J. Wray, C. Kenten, Jessica Russell, L. Carr, A. Hassiotis, C. Jewitt, P. Kelly, S. Kerry, I. Tuffrey‐Wijne, M. Whiting, F. Gibson
{"title":"学习障碍儿童及其家庭获得医院护理的平等机会:一项混合方法研究","authors":"K. Oulton, J. Wray, C. Kenten, Jessica Russell, L. Carr, A. Hassiotis, C. Jewitt, P. Kelly, S. Kerry, I. Tuffrey‐Wijne, M. Whiting, F. Gibson","doi":"10.3310/nwkt5206","DOIUrl":null,"url":null,"abstract":"\n \n To our knowledge, there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (hereafter referred to as children) with learning disability and their families. The extent to which their experiences differ from those of parents of children without learning disability is not known. The views and experiences of children with learning disability are almost non-existent in the literature.\n \n \n \n To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate and prevent children with learning disability and their families receiving equal access to high-quality care and services, and to develop guidance for NHS trusts.\n \n \n \n A four-phase transformative, mixed-methods case study design comparing the experiences of children with and children without learning disability, their parents and health-care staff.\n \n \n \n Phase 1 comprised interviews with senior managers (n = 65), content analysis of hospital documents and a staff survey (n = 2261) across 24 hospitals in England, including all specialist children’s hospitals. Phases 2–4 involved seven of these hospitals. Phase 2 involved (a) interviews and photography with children and their parents (n = 63), alongside a parent hospital diary and record of safety concerns; (c) hospital staff interviews (n = 98) and community staff survey (n = 429); and (d) retrospective mapping of hospital activity. During phase 3, children (n = 803) and parents (n = 812) completed satisfaction surveys. Phase 4 involved seeking consultation on the findings.\n \n \n \n A model for mixed-methods data analysis and synthesis was used. Qualitative data were managed and analysed thematically, supported with NVivo (QSR International, Warrington, UK). Quantitative data were analysed using parametric and non-parametric descriptive statistics.\n \n \n \n Nationally, there is considerable uncertainty within hospitals and variation between hospitals in terms of the policies, systems and practices in place specifically for children with learning disability. Staff are struggling to individualise care and are being let down by an inadequate system. Attitudes and assumptions can have a lasting impact on parents and children. The findings serve as a useful guide to trusts about how best to meet the Learning Disability Improvement standards that have been set.\n \n \n \n Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with learning disability and their parents is much greater. Individualising care is key. Our findings suggest that staff may need to undertake training and gain experience to build their skills and knowledge about children with learning disability generally, as well as generate knowledge about the individual child through proactively working in partnership with parents before their child’s admission. The findings also suggest that we may need to address the impact of children’s hospitalisation on parents’ health and well-being.\n \n \n \n The greatest need is for the development and validation of an instrument for the assessment and management of risk in children with learning disability in hospital.\n \n \n \n We cannot say with certainty that the sites selected are representative of all services caring for children with learning disability.\n \n \n \n The study has been registered on the National Institute for Health and Care Research (NIHR) Clinical Research Network portfolio as 20461 (phase 1) and 31336 (phases 2–4).\n \n \n \n This project was funded by the NIHR Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 13. See the NIHR Journals Library website for further project information.\n","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":"1 1","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"2","resultStr":"{\"title\":\"Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study\",\"authors\":\"K. Oulton, J. Wray, C. Kenten, Jessica Russell, L. Carr, A. Hassiotis, C. Jewitt, P. Kelly, S. Kerry, I. Tuffrey‐Wijne, M. Whiting, F. Gibson\",\"doi\":\"10.3310/nwkt5206\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"\\n \\n To our knowledge, there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (hereafter referred to as children) with learning disability and their families. The extent to which their experiences differ from those of parents of children without learning disability is not known. The views and experiences of children with learning disability are almost non-existent in the literature.\\n \\n \\n \\n To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate and prevent children with learning disability and their families receiving equal access to high-quality care and services, and to develop guidance for NHS trusts.\\n \\n \\n \\n A four-phase transformative, mixed-methods case study design comparing the experiences of children with and children without learning disability, their parents and health-care staff.\\n \\n \\n \\n Phase 1 comprised interviews with senior managers (n = 65), content analysis of hospital documents and a staff survey (n = 2261) across 24 hospitals in England, including all specialist children’s hospitals. Phases 2–4 involved seven of these hospitals. Phase 2 involved (a) interviews and photography with children and their parents (n = 63), alongside a parent hospital diary and record of safety concerns; (c) hospital staff interviews (n = 98) and community staff survey (n = 429); and (d) retrospective mapping of hospital activity. During phase 3, children (n = 803) and parents (n = 812) completed satisfaction surveys. Phase 4 involved seeking consultation on the findings.\\n \\n \\n \\n A model for mixed-methods data analysis and synthesis was used. Qualitative data were managed and analysed thematically, supported with NVivo (QSR International, Warrington, UK). Quantitative data were analysed using parametric and non-parametric descriptive statistics.\\n \\n \\n \\n Nationally, there is considerable uncertainty within hospitals and variation between hospitals in terms of the policies, systems and practices in place specifically for children with learning disability. Staff are struggling to individualise care and are being let down by an inadequate system. Attitudes and assumptions can have a lasting impact on parents and children. The findings serve as a useful guide to trusts about how best to meet the Learning Disability Improvement standards that have been set.\\n \\n \\n \\n Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with learning disability and their parents is much greater. Individualising care is key. Our findings suggest that staff may need to undertake training and gain experience to build their skills and knowledge about children with learning disability generally, as well as generate knowledge about the individual child through proactively working in partnership with parents before their child’s admission. The findings also suggest that we may need to address the impact of children’s hospitalisation on parents’ health and well-being.\\n \\n \\n \\n The greatest need is for the development and validation of an instrument for the assessment and management of risk in children with learning disability in hospital.\\n \\n \\n \\n We cannot say with certainty that the sites selected are representative of all services caring for children with learning disability.\\n \\n \\n \\n The study has been registered on the National Institute for Health and Care Research (NIHR) Clinical Research Network portfolio as 20461 (phase 1) and 31336 (phases 2–4).\\n \\n \\n \\n This project was funded by the NIHR Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 13. See the NIHR Journals Library website for further project information.\\n\",\"PeriodicalId\":73204,\"journal\":{\"name\":\"Health and social care delivery research\",\"volume\":\"1 1\",\"pages\":\"\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2022-06-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"2\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Health and social care delivery research\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.3310/nwkt5206\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health and social care delivery research","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.3310/nwkt5206","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 2

摘要

据我们所知,尚未对医院服务在多大程度上满足有学习障碍的儿童和青少年(以下简称儿童)及其家庭的需要进行全面审查。他们的经历与没有学习障碍的孩子的父母有多大的不同尚不清楚。关于学习障碍儿童的观点和经历在文献中几乎是不存在的。确定国民保健制度医院中促进和防止有学习障碍的儿童及其家庭平等获得高质量护理和服务的跨组织、组织和个人因素,并为国民保健制度信托机构制定指导方针。一项四阶段变革性混合方法案例研究设计,比较有学习障碍儿童和无学习障碍儿童、其父母和保健工作人员的经历。第一阶段包括对英国24家医院(包括所有专科儿童医院)的高级管理人员的访谈(n = 65)、医院文件的内容分析和员工调查(n = 2261)。第2-4阶段涉及其中7家医院。第二阶段涉及(a)对儿童及其父母进行访谈和拍照(n = 63),同时编写家长医院日记和安全问题记录;(c)医院员工访谈(n = 98)和社区员工调查(n = 429);(d)回顾性绘制医院活动图。在第三阶段,儿童(n = 803)和家长(n = 812)完成了满意度调查。第四阶段涉及就调查结果征求意见。采用混合方法数据分析和综合模型。在NVivo (QSR International, Warrington, UK)的支持下,对定性数据进行了专题管理和分析。定量数据分析采用参数和非参数描述性统计。在全国范围内,就专门针对学习障碍儿童的政策、制度和做法而言,医院内部存在相当大的不确定性,医院之间也存在差异。工作人员正在努力实现个性化护理,并因系统不足而感到失望。态度和假设会对父母和孩子产生持久的影响。这些发现为如何最好地满足已制定的学习障碍改善标准的信托机构提供了有用的指导。安全问题和护理质量影响到急症医院的所有儿童及其父母,但对学习障碍儿童及其父母的影响要大得多。个性化护理是关键。我们的研究结果表明,工作人员可能需要接受培训并获得经验,以建立他们对学习障碍儿童的技能和知识,并通过在孩子入院前与父母积极合作,产生对个别孩子的知识。研究结果还表明,我们可能需要解决儿童住院对父母健康和福祉的影响。最需要的是开发和验证一种工具,以评估和管理住院学习障碍儿童的风险。我们不能肯定地说,选定的地点代表了所有照顾学习障碍儿童的服务。该研究已在美国国立卫生与保健研究所(NIHR)临床研究网络组合中注册,编号为20461(1期)和31336(2-4期)。该项目由国家卫生研究院卫生和社会保健提供研究项目资助,将全文发表在《卫生和社会保健提供研究》上;第十卷,第13期。请参阅NIHR期刊图书馆网站了解更多项目信息。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study
To our knowledge, there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (hereafter referred to as children) with learning disability and their families. The extent to which their experiences differ from those of parents of children without learning disability is not known. The views and experiences of children with learning disability are almost non-existent in the literature. To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate and prevent children with learning disability and their families receiving equal access to high-quality care and services, and to develop guidance for NHS trusts. A four-phase transformative, mixed-methods case study design comparing the experiences of children with and children without learning disability, their parents and health-care staff. Phase 1 comprised interviews with senior managers (n = 65), content analysis of hospital documents and a staff survey (n = 2261) across 24 hospitals in England, including all specialist children’s hospitals. Phases 2–4 involved seven of these hospitals. Phase 2 involved (a) interviews and photography with children and their parents (n = 63), alongside a parent hospital diary and record of safety concerns; (c) hospital staff interviews (n = 98) and community staff survey (n = 429); and (d) retrospective mapping of hospital activity. During phase 3, children (n = 803) and parents (n = 812) completed satisfaction surveys. Phase 4 involved seeking consultation on the findings. A model for mixed-methods data analysis and synthesis was used. Qualitative data were managed and analysed thematically, supported with NVivo (QSR International, Warrington, UK). Quantitative data were analysed using parametric and non-parametric descriptive statistics. Nationally, there is considerable uncertainty within hospitals and variation between hospitals in terms of the policies, systems and practices in place specifically for children with learning disability. Staff are struggling to individualise care and are being let down by an inadequate system. Attitudes and assumptions can have a lasting impact on parents and children. The findings serve as a useful guide to trusts about how best to meet the Learning Disability Improvement standards that have been set. Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with learning disability and their parents is much greater. Individualising care is key. Our findings suggest that staff may need to undertake training and gain experience to build their skills and knowledge about children with learning disability generally, as well as generate knowledge about the individual child through proactively working in partnership with parents before their child’s admission. The findings also suggest that we may need to address the impact of children’s hospitalisation on parents’ health and well-being. The greatest need is for the development and validation of an instrument for the assessment and management of risk in children with learning disability in hospital. We cannot say with certainty that the sites selected are representative of all services caring for children with learning disability. The study has been registered on the National Institute for Health and Care Research (NIHR) Clinical Research Network portfolio as 20461 (phase 1) and 31336 (phases 2–4). This project was funded by the NIHR Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 13. See the NIHR Journals Library website for further project information.
求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
CiteScore
1.00
自引率
0.00%
发文量
0
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信