What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?
What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?
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DOI：
10.1016/j.jpainsymman.2020.07.024
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发表时间：
2021-01
影响因子：
4.7
通讯作者：
Feudtner, Chris
中科院分区：
文献类型：
--
作者：
Boyden, Jackelyn Y.;Ersek, Mary;Deatrick, Janet A.;Widger, Kimberley;LaRagione, Gwenn;Lord, Blyth;Feudtner, Chris
患有缩短生命的严重疾病和医疗复杂护理需求的儿童通常由家人在家照顾。然而，很少有人知道什么方面的儿科姑息治疗和临终关怀在家庭环境（PPHC@Home）的家庭价值最大。探索父母如何评价和优先考虑PPHC@Home的领域，作为一项更大研究的第一阶段，该研究开发了一项父母报告的PPHC@Home体验测量。20个领域的高价值PPHC@家，来自全国共识项目的质量姑息治疗指南，文献，和利益相关者小组，进行了评估。使用离散选择实验，父母提供了他们的评级的最重要和最不重要的PPHC@Home域。我们还探讨了父母分组如何评价这些领域的潜在差异。47名家长参加了活动。总体而言，评分最高的领域包括护理的物理方面：症状管理，儿童护理的心理/情感方面，以及护理协调。评分最低的领域包括精神和宗教方面的护理和文化方面的护理。在探索性分析中，有其他孩子的父母对兄弟姐妹领域护理的心理/情感方面的评分显著高于没有其他孩子的父母（P = 0.02）。此外，丧亲父母的评价照顾者的支持在生命的最后域显着高于父母谁是目前照顾他们的孩子（P = 0.04）。没有其他显着差异的领域评级进行了观察。了解父母最看重的是什么，为进一步探索和讨论资源分配和护理改善工作的优先领域提供了基础。
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 Caregiver support at 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.
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影响因子：
2.8
作者：
Gaab, Erin M.;Owens, Glynn R.;MacLeod, Roderick D.
通讯作者：
MacLeod, Roderick D.
DOI：
10.1007/s40271-015-0118-z
发表时间：
2015-10
期刊：
The patient
影响因子：
--
作者：
de Bekker-Grob EW;Donkers B;Jonker MF;Stolk EA
通讯作者：
Stolk EA
影响因子：
5.1
作者：
Baker, Justin N.;Levine, Deena R.;Kane, Javier R.
通讯作者：
Kane, Javier R.
影响因子：
8
作者：
Alexander, J;Cartwright, JD;Tilton, AH
通讯作者：
Tilton, AH
影响因子：
8
作者：
Feudtner, Chris;Kang, Tammy I.;Wolfe, Joanne
通讯作者：
Wolfe, Joanne