Wright S Margaret, Lee Brian, Belzer Leslee T, Goodwin Emily J, Colvin Jeffrey D
Division of General Academic Pediatrics, Children's Mercy Kansas City, Kansas City, MO 64111, USA.
Department of Pediatrics, School of Medicine, University of Missouri-Kansas City, Kansas City, MO 64108, USA.
Children (Basel). 2025 Mar 31;12(4):455. doi: 10.3390/children12040455.
: Some children with medical complexity (CMC) require home nursing (HN) to maintain their health, but many families have difficulty staffing approved HN hours. Little is known about the relationship between understaffed HN, the acute care encounter rate, and family wellbeing. This study examined the association between understaffed HN, acute care encounters, and family wellbeing among CMC. : We completed a cross-sectional survey study of caregivers of CMC age 0-17 years at a children's hospital in the Midwest US. The primary predictors were the proportion of staffed to approved HN hours and the acute care rate. The primary outcome was family wellbeing, measured as parental stress, family impact, interpersonal support, parental empowerment, and financial hardship. General linear models were used to model continuous family wellbeing outcomes. Poisson models were used to calculate the financial hardship summed score ([0-4]). : Receipt of <50% of approved HN hours was associated with family financial hardship in adjusted analyses. Total family impact and health-related quality of life (HRQL) scores were associated with the acute care rate, with more positive scores among CMC within the middle tertile for the acute care rate compared to the lowest tertile. There was no association between HN staffing and family wellbeing, or between acute care rate and family financial hardship. : High levels of financial hardship were significantly associated with understaffed HN hours. Family impact and parental HRQL were associated with the acute care rate. Access to HN services carries potential family-level and system-level benefits for this complex and high acuity pediatric population.
一些患有复杂疾病的儿童（CMC）需要家庭护理（HN）来维持健康，但许多家庭在安排获批的家庭护理时长方面存在困难。对于家庭护理人员不足、急症护理就诊率和家庭福祉之间的关系，人们了解甚少。本研究调查了患有复杂疾病的儿童中家庭护理人员不足、急症护理就诊情况与家庭福祉之间的关联。
我们在美国中西部一家儿童医院对0至17岁患有复杂疾病儿童的照顾者进行了一项横断面调查研究。主要预测因素是实际安排的家庭护理时长与获批时长的比例以及急症护理率。主要结果是家庭福祉，通过父母压力、家庭影响、人际支持、父母赋权和经济困难来衡量。使用一般线性模型对连续的家庭福祉结果进行建模。使用泊松模型计算经济困难总分（[0 - 4]）。
在调整分析中，实际安排的家庭护理时长不足获批时长的50%与家庭经济困难相关。家庭总影响和与健康相关的生活质量（HRQL）得分与急症护理率相关，急症护理率处于中间三分位数的患有复杂疾病的儿童相比处于最低三分位数的儿童，得分更积极。家庭护理人员配备与家庭福祉之间、急症护理率与家庭经济困难之间均无关联。
高水平的经济困难与家庭护理时长不足显著相关。家庭影响和父母的健康相关生活质量与急症护理率相关。对于这一复杂且病情严重的儿科人群，获得家庭护理服务对家庭层面和系统层面都有潜在益处。
