Institute of Women and Children's Health, King's College London, 1 Lambeth Palace Rd, South Bank, SE1 7EU, London, UK.
Ethox Centre and Wellcome Centre for Ethics and Humanities, Nuffield Department of Population Health, University of Oxford, Big Data Institute, Old Road Campus, Oxford, OX3 7LF, UK.
BMC Health Serv Res. 2023 May 23;23(1):530. doi: 10.1186/s12913-023-09452-1.
The purpose of thispaper is to explore the experiences of parents and carers of children with chronic health conditions in accessing healthcare during the Covid-19 pandemic. Children with chronic conditions typically rely on both planned and unplanned care, and contact with healthcare professionals over extensive periods of time. Their distinct care needs render these children vulnerable to even to minor changes in healthcare provision. The wide-ranging care disruptions during the pandemic were therefore likely drastically to affect their health and wellbeing; an assessment of the effects of Covid-19 policies on healthcare access and quality of care delivered for this group is needed.
From 25/01/2022 to 25/05/2022, four focus groups were held with parents/carers of children with diabetes, neurodivergence, mental health conditions, and medical complexities to explore their experiences in navigating the healthcare system during the pandemic. Interviews were transcribed and then subjected to thematic analysis using NVivo qualitative research software.
Our results indicate that children with chronic health conditions (and their parents/carers) experienced difficulties accessing healthcare during the pandemic. Problems with late diagnosis, prolonged waiting times, and deficiencies with telemedicine were identified, as were impacts of healthcare disruptions on children's wellbeing, and the wellbeing of wider families. We found that children with neurodivergence and those with mental health conditions were particularly affected with their health needs repeatedly de-prioritised. Furthermore, the loss of contact with multi-specialty clinical teams profoundly affected parents and carers, leaving them feeling isolated in managing their children's health. These diminished relationships became another vector for uncertainty in supporting children's health.
The effects of healthcare disruptions on the welfare of children with chronic conditions (and their families), are well evidenced in this work, providing deeper understandings of the relationships between these children, their families and clinicians. The evidence in this paper aims to inform future policy and ethical guidelines so that the needs of children with long-term health conditions can be properly considered in times of crisis.
本文旨在探讨患有慢性疾病的儿童在新冠疫情期间获取医疗保健的经历。患有慢性病的儿童通常需要计划内和计划外的护理，并且需要在较长时间内与医疗保健专业人员接触。他们特殊的护理需求使这些儿童容易受到医疗保健服务提供方面的微小变化的影响。因此，疫情期间广泛的护理中断很可能严重影响他们的健康和福祉；需要评估新冠疫情政策对这一群体获得医疗保健和护理质量的影响。
从 2022 年 1 月 25 日至 2022 年 5 月 25 日，我们与患有糖尿病、神经发育障碍、心理健康问题和医疗复杂性的儿童的父母/照顾者进行了四次焦点小组讨论，以探讨他们在疫情期间在医疗保健系统中的导航经验。访谈记录被转录，然后使用 NVivo 定性研究软件进行主题分析。
我们的研究结果表明，患有慢性健康状况的儿童（及其父母/照顾者）在疫情期间在获得医疗保健方面遇到了困难。发现了诊断延迟、等待时间延长和远程医疗不足等问题，还发现医疗保健中断对儿童的幸福感以及更广泛家庭的幸福感产生了影响。我们发现，神经发育障碍和心理健康问题的儿童受到的影响特别大，他们的健康需求被反复优先考虑。此外，与多专业临床团队失去联系对父母和照顾者产生了深远的影响，使他们在管理子女健康方面感到孤立。这种关系的缺失成为了支持儿童健康的另一个不确定因素。
本文中的证据充分证明了医疗保健中断对患有慢性疾病的儿童（及其家庭）福利的影响，深入了解了这些儿童、他们的家庭和临床医生之间的关系。本文中的证据旨在为未来的政策和伦理准则提供信息，以便在危机时期能够适当考虑长期健康状况儿童的需求。
