‘There was nothing, just absolute darkness’: Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study

IF 1.8 4区医学 Q2 PEDIATRICS

Child Care Health and Development Pub Date : 2024-07-11 DOI:10.1111/cch.13303

Kirsten Prest, Emma Wilson, Io Vassiliadou, Sayeeda Ali, Monica Lakhanpaul, Christopher Morris, Cally Tann, Phillip Harniess, Sasha Lewis-Jackson, Hannah Kuper, Michelle Heys

{"title":"‘There was nothing, just absolute darkness’: Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study","authors":"Kirsten Prest, Emma Wilson, Io Vassiliadou, Sayeeda Ali, Monica Lakhanpaul, Christopher Morris, Cally Tann, Phillip Harniess, Sasha Lewis-Jackson, Hannah Kuper, Michelle Heys","doi":"10.1111/cch.13303","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme (‘Ubuntu’) to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.</p>\n </section>\n </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":"50 4","pages":""},"PeriodicalIF":1.8000,"publicationDate":"2024-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/cch.13303","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Child Care Health and Development","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/cch.13303","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PEDIATRICS","Score":null,"Total":0}

引用次数: 0

Abstract

Background

Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme (‘Ubuntu’) to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data.

Methods

Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis.

Results

Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate.

Conclusions

The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.

查看原文本刊更多论文

什么都没有，只有绝对的黑暗"：了解在英国多元化背景下照顾患有复杂神经残疾的儿童和青少年的人的需求：ENCOMPASS 研究中的定性探索。

背景：患有复杂性神经残疾的儿童和青少年（CYP）在身体、沟通、教育和社交方面面临多重挑战，需要复杂的多学科综合护理。所需的整体护理包括为家庭和父母/照顾者提供支持。这项广泛研究的目的是向父母/照顾者和医疗保健专业人员（HCPs）介绍一项新计划（"Ubuntu"），以测试其概念和内容的可行性和可接受性，并考虑在英国进行可能的调整。通过数据收集和分析，我们发现了有关护理历程、医疗服务导航和服务差距的丰富数据。本文仅关注这些主题。后续论文将报告可行性和适应性数据：2020 年，我们从英国伦敦纽汉区的社区儿童健康服务机构招募了 12 名患有复杂神经残疾的儿童青少年的照顾者和 6 名来自不同学科的保健人员，对他们进行了两轮半结构化访谈。访谈内容包括开放式问题，以探讨护理历程、健康服务导航经验和感知到的服务差距。访谈记录采用数据驱动归纳式主题分析法进行分析：结果：我们确定了三个主题，这些主题与了解护理者的经历和与当前服务提供相关的未满足需求这一目标相关。这三个主题分别是：(1) 照顾者的心理健康；(2) 信息差距；(3) 全面支持的需求。据报告，精神健康方面存在困难，尤其是在诊断期间。优先需求包括提供有关诊断和所提供服务的明确信息、建立同伴支持网络的机会以及社区服务合作：结论：为患有神经系统残疾的儿童提供医疗服务时，除了满足儿童的临床需求外，还应考虑其家庭的广泛需求。

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

Child Care Health and Development 医学-小儿科

CiteScore

3.40

自引率

5.30%

发文量

136

审稿时长

4-8 weeks

期刊介绍： Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.