Boyden Jackelyn Y, Ersek Mary, Deatrick Janet A, Widger Kimberley, LaRagione Gwenn, Lord Blyth, Feudtner Chris
School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Corporal Michael J. Crescenz VA Medical Center, Philadelphia, Pennsylvania, USA; University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
J Pain Symptom Manage. 2021 Jan;61(1):12-23. doi: 10.1016/j.jpainsymman.2020.07.024. Epub 2020 Jul 31.
Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most.
To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.
Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains.
Forty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P = 0.02). Furthermore, bereaved parents rated the Caregiversupportat the end of life domain significantly higher than parents who were currently caring for their child (P = 0.04). No other significant differences in domain ratings were observed.
Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
患有缩短生命的严重疾病且有复杂医疗护理需求的儿童通常由家人在家中照顾。然而，对于家庭环境中的儿科姑息和临终关怀护理（PPHC@Home），家人最看重哪些方面却知之甚少。
作为一项大型研究的第一阶段，探讨父母如何对PPHC@Home的各个领域进行评分和排序，该研究开发了一种由父母报告的PPHC@Home体验测量方法。
对源自国家姑息治疗质量共识项目指南、文献以及一个利益相关者小组的20个高价值PPHC@Home领域进行了评估。通过离散选择实验，父母对PPHC@Home最看重和最不看重的领域进行了评分。我们还探讨了不同父母亚组对这些领域评分的潜在差异。
47位父母参与了研究。总体而言，评分最高的领域包括护理的身体方面：症状管理、对孩子的心理/情感护理以及护理协调。评分最低的领域包括护理的精神和宗教方面以及护理的文化方面。在探索性分析中，有其他孩子的父母对兄弟姐妹心理/情感护理领域的评分显著高于没有其他孩子的父母（P = 0.02）。此外，失去孩子的父母对临终时照顾者支持领域的评分显著高于目前正在照顾孩子的父母（P = 0.04）。未观察到其他领域评分的显著差异。
了解父母对PPHC@Home最看重的方面为进一步探索和讨论资源分配及护理改进工作的优先领域奠定了基础。
