School of Public Policy, University of Calgary, Calgary, Alberta, Canada.
School of Nursing and Midwifery, Mount Royal University, Calgary, Alberta, Canada.
Child Care Health Dev. 2023 Sep;49(5):834-845. doi: 10.1111/cch.13149. Epub 2023 Jul 5.
The COVID-19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems.
This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives. These experiences can inform emergency preparedness planning and recovery strategies.
A qualitative descriptive design was utilized to explore and describe the experience of caregivers of children with neurodevelopmental disabilities and medical complexity. Nineteen caregivers were interviewed about their experience with care coordination during the pandemic.
Caregiver experiences of care coordination during the pandemic highlighted the importance of care coordination during a public health emergency. Two themes emerged: (1) disruptions to care coordination from initial COVID-19 restrictions leading to lack of access to supports and services, increasing level of need, and impacts of disruption for caregivers and children; and (2) adaptation and responsiveness to COVID-19 restrictions by advocating for families and managing uncertainties.
Recommendations include recognition of care coordination as a protective factor, designation as an essential service and sustained or increased funding for care coordination during emergencies. Families should be engaged in identifying care needs during care coordination, including during public health emergencies.
COVID-19 大流行和随后的公共卫生限制给患有神经发育障碍和医疗复杂性的儿童及其照顾者带来了重大挑战，包括对儿童及其家庭的护理协调限制。护理协调增强了家庭在医疗、教育和残疾护理方面获取和协调各部门和系统服务的技能。
本研究从照顾者的角度探讨了大流行限制对护理协调的影响。这些经验可以为应急准备规划和恢复策略提供信息。
采用定性描述设计来探索和描述患有神经发育障碍和医疗复杂性的儿童的照顾者的护理协调体验。19 名照顾者接受了有关他们在大流行期间护理协调经验的采访。
大流行期间照顾者护理协调的经验强调了在公共卫生紧急情况下护理协调的重要性。出现了两个主题：(1) COVID-19 最初限制导致无法获得支持和服务，增加了照顾者和儿童的需求水平和中断影响，从而导致护理协调中断；以及(2) 通过倡导家庭和管理不确定性，对 COVID-19 限制的适应和响应。
建议包括认识到护理协调是一个保护因素，将其指定为基本服务，并在紧急情况下为护理协调提供持续或增加的资金。在护理协调期间，包括在公共卫生紧急情况下，应让家庭参与确定护理需求。
