Keim-Malpass Jessica, Muir K Jane, Letzkus Lisa C, Scheer Eleanore, Valdez Rupa S
Division of Pediatric Hematology-Oncology, Department of Pediatrics, University of Virginia School of Medicine, P.O. Box 800386, Charlottesville, US.
School of Nursing, University of Pennsylvania, Philadelphia, US.
J Particip Med. 2024 May 17;16. doi: 10.2196/60666.
Children with medical complexity (CMC) represent a heterogeneous group of children with multiple, chronic healthcare conditions. Caregivers of CMC experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child's life. The economic impacts of caregiving are yet understudied in the CMC context. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease because they lack direct caregiver voice and context of caregiving activities and existing methods have been noted to be ableist.
The purpose of this study was to explore the economic spillover impacts of caregiving among families of CMC using their own words and perspectives with the intent of expanding caregiver-centered perspectives when developing economic models.
This study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of CMC and their social networks. Caregivers of CMC were recruited through a Pediatric Complex Care clinic at an academic medical center in the mid-Atlantic region, USA. This study used inductive qualitative descriptive methods and the use of a template to define features of the person impacted and to define the economic construct as either a direct or indirect/spillover cost.
Twenty caregivers were included in this study. Perspectives from the caregivers of CMC revealed several key themes: (1) time investment in caregiving - impacting the primary caregivers; (2) physical and mental health impacts - impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care - impacting the child themselves, siblings, and the primary caregivers; (4) impacts to the social network/social capital.
The themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of CMC. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive.
n/a.
RR2-10.2196/14810.
患有复杂疾病的儿童（CMC）是一群患有多种慢性医疗状况的异质性儿童群体。CMC的照料者经历着高强度的照料，这种照料往往具有多变性，跨越多个护理网络，并且常常贯穿孩子的一生。在CMC背景下，照料的经济影响尚未得到充分研究。在开发疾病经济模型时，仅使用定量方法存在公认的局限性，因为这些方法缺乏照料者的直接声音以及照料活动的背景信息，而且现有方法被认为存在能力主义倾向。
本研究的目的是利用患有复杂疾病的儿童家庭自己的话语和观点，探讨照料的经济溢出影响，以便在开发经济模型时扩展以照料者为中心的观点。
本研究是对一项定性研究的二次分析，该定性研究旨在考察患有复杂疾病的儿童照料者及其社会网络中的家庭管理实践。通过美国大西洋中部地区一家学术医疗中心的儿科复杂护理诊所招募患有复杂疾病的儿童照料者。本研究采用归纳性定性描述方法，并使用模板来定义受影响者的特征，以及将经济结构定义为直接成本或间接/溢出成本。
本研究纳入了20名照料者。患有复杂疾病的儿童照料者的观点揭示了几个关键主题：（1）照料的时间投入——影响主要照料者；（2）身心健康影响——影响孩子自身、兄弟姐妹和主要照料者；（3）对休闲活动和自我照料的影响——影响孩子自身、兄弟姐妹和主要照料者；（4）对社会网络/社会资本的影响。
所描述的主题可以转化为包容性的以家庭为中心的模型，这些模型能够体现出患有复杂疾病的儿童家庭单位背景下照料的影响。使用定性方法来扩展我们对定量经济模型的开发，可以适用于其他有照料者参与护理的人群。在基于偏好的评估中，照料者能够而且应该拥有积极的发言权，这些评估在经济背景下实施，以使它们更具包容性。
无。
RR2 - 10.2196/14810。
