Lindley Lisa C, Keim-Malpass Jessica
Assistant Professor, College of Nursing, University of Tennessee, Knoxville, TN.
Assistant Professor, School of Nursing, University of Virginia, Charlottesville, VA.
Int J Palliat Nurs. 2017 May 2;23(5):230-237. doi: 10.12968/ijpn.2017.23.5.230.
Hospice care for children with multiple complex chronic conditions (MCCC) is complicated given their unique health at the end of life (EOL). Little is known about the quality of the hospice care MCCC children receive and how that might differ from children without MCCC.
To compare the quality of hospice care (i.e., structures, processes, outcomes) between children with and without MCCC.
This retrospective, comparative study used data from the National Home and Hospice Care Survey, which included a nationally representative sample of paediatric hospice patients. The Pearson chi-square and Wald tests for comparisons were used.
MCCC children enrolled in hospice care for over 2 months with multiple visits by hospice staff. They had low symptom burden with minimal discontinuity of care at EOL. Children without MCCC had short length of stays in hospice with few visits by nurses and other clinicians. These children had high symptom burden and significant disenrollment from hospice care to receive more aggressive treatment.
The findings revealed significant differences in paediatric hospice care between MCCC and non-MCCC children, which provides critical insight into the quality of hospice care.
对于患有多种复杂慢性病（MCCC）的儿童而言，临终关怀护理因其在生命末期的独特健康状况而变得复杂。对于MCCC儿童所接受的临终关怀护理质量以及其与非MCCC儿童的护理质量差异，人们知之甚少。
比较患有和未患有MCCC的儿童之间的临终关怀护理质量（即结构、过程、结果）。
这项回顾性比较研究使用了来自全国家庭与临终关怀护理调查的数据，该调查包括具有全国代表性的儿科临终关怀患者样本。使用Pearson卡方检验和Wald检验进行比较。
患有MCCC的儿童接受临终关怀护理超过2个月，临终关怀工作人员多次探访。他们的症状负担较轻，临终时护理的间断极少。未患有MCCC的儿童在临终关怀机构的住院时间较短，护士和其他临床医生的探访次数较少。这些儿童症状负担较重，并且有大量儿童退出临终关怀护理以接受更积极的治疗。
研究结果揭示了MCCC儿童与非MCCC儿童在儿科临终关怀护理方面存在显著差异，这为临终关怀护理质量提供了关键见解。
