Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, WI.
Department of Pediatrics, David Geffen School of Medicine at UCLA, Los Angeles, CA.
J Pediatr. 2022 Aug;247:109-115.e2. doi: 10.1016/j.jpeds.2022.05.011. Epub 2022 May 13.
To test associations between parent-reported confidence to avoid hospitalization and caregiving strain, activation, and health-related quality of life (HRQOL).
In this prospective cohort study, enrolled parents of children with medical complexity (n = 75) from 3 complex care programs received text messages (at random times every 2 weeks for 3 months) asking them to rate their confidence to avoid hospitalization in the next month. Low confidence, as measured on a 10-point Likert scale (1 = not confident; 10 = fully confident), was defined as a mean rating <5. Caregiving measures included the Caregiver Strain Questionnaire, Family Caregiver Activation in Transition (FCAT), and caregiver HRQOL (Medical Outcomes Study Short Form 12 [SF12]). Relationships between caregiving and confidence were assessed with a hierarchical logistic regression and classification and regression trees (CART) model.
The parents were mostly mothers (77%) and were linguistically diverse (20% spoke Spanish as their primary language), and 18% had low confidence on average. Demographic and clinical variables had weaker associations with confidence. In regression models, low confidence was associated with higher caregiver strain (aOR, 3.52; 95% CI, 1.45-8.54). Better mental HRQOL was associated with lower likelihood of low confidence (aOR, 0.89; 95% CI, 0.80-0.97). In the CART model, higher strain similarly identified parents with lower confidence. In all models, low confidence was not associated with caregiver activation (FCAT) or physical HRQOL (SF12) scores.
Parents of children with medical complexity with high strain and low mental HRQOL had low confidence in the range in which intervention to avoid hospitalization would be warranted. Future work could determine how adaptive interventions to improve confidence and prevent hospitalizations should account for strain and low mental HRQOL.
检验父母报告避免住院的信心与照护负担、照护者激活和健康相关生活质量（HRQOL）之间的关联。
在这项前瞻性队列研究中，从 3 个复杂护理项目中招募了患有复杂疾病的儿童的父母（n=75），他们会收到短信（在接下来的 3 个月中，每 2 周随机时间），要求他们对下个月避免住院的信心进行评分。10 分制（1=没有信心；10=完全有信心）评分<5 被定义为低信心。照护者评估措施包括照护者负担问卷、家庭照护者过渡激活量表（FCAT）和照护者 HRQOL（医疗结局研究简表 12 项[SF12]）。采用分层逻辑回归和分类回归树（CART）模型评估照护和信心之间的关系。
这些父母大多为母亲（77%），语言背景多样化（20%的人以西班牙语为主要语言），平均有 18%的人信心较低。人口统计学和临床变量与信心的关联较弱。在回归模型中，低信心与较高的照护者负担相关（优势比，3.52；95%置信区间，1.45-8.54）。较好的心理 HRQOL 与低信心的可能性降低相关（优势比，0.89；95%置信区间，0.80-0.97）。在 CART 模型中，较高的负担同样可以识别出信心较低的父母。在所有模型中，低信心与照护者激活（FCAT）或身体 HRQOL（SF12）评分均无关。
患有复杂疾病的儿童的父母中，负担较重且心理 HRQOL 较低的父母对需要干预以避免住院的信心较低。未来的研究可以确定如何针对改善信心和预防住院的适应性干预措施，应该考虑到负担和较低的心理 HRQOL。
