Foster Carolyn C, Shaunfield Sara, Black Laura E, Labellarte Patricia Z, Davis Matthew M
J Pediatr Health Care. 2022 Mar-Apr;36(2):154-164. doi: 10.1016/j.pedhc.2020.08.005. Epub 2021 Oct 28.
We sought to characterize the current supports used by parents to care for children with medical complexity (CMC) at home and parental preferences for additional supports to meet identified gaps.
Semistructured interviews were conducted with parents of 18 CMC. Interviews were transcribed then analyzed using a constant comparative approach.
Extended family and community offloaded nonmedical tasks, assisted financially, gave emotional reinforcement, and cared for CMC. Home health providers also directly cared for CMC, but access and quality varied. Government programs paid for in-home care, but eligibility varied. Parents wanted more paid home care but also more support completing nonmedical tasks, mitigating financial strains, and accessing mental health services.
Parents of CMC relied on family and community members to help fill existing gaps in-home care, but gaps remained, suggesting the need for more medical and social supports for the in-home care of CMC and their families.
我们试图描述目前家长在家中照顾患有复杂疾病儿童（CMC）时所使用的支持方式，以及家长对额外支持的偏好，以填补已发现的差距。
对18名患有复杂疾病儿童的家长进行了半结构化访谈。访谈内容转录后采用持续比较法进行分析。
大家庭和社区分担了非医疗任务，提供了经济援助，给予了情感支持，并照顾患有复杂疾病的儿童。家庭健康服务提供者也直接照顾患有复杂疾病的儿童，但可及性和质量各不相同。政府项目为居家护理付费，但资格标准各不相同。家长们希望获得更多付费居家护理，但也希望在完成非医疗任务、缓解经济压力和获得心理健康服务方面得到更多支持。
患有复杂疾病儿童的家长依靠家人和社区成员来帮助填补居家护理方面现有的空白，但差距仍然存在，这表明需要为患有复杂疾病儿童及其家庭的居家护理提供更多医疗和社会支持。
