Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach.
Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach.
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DOI：
10.1186/s12904-020-00703-0
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发表时间：
2021-01-14
影响因子：
3.1
通讯作者：
Ersek M
中科院分区：
文献类型：
--
作者：
Boyden JY;Feudtner C;Deatrick JA;Widger K;LaRagione G;Lord B;Ersek M
许多患有严重疾病的儿童正在家中接受儿科姑息治疗和临终关怀团队（PPHC@Home）的姑息治疗和临终关怀。尽管PPHC@Home有所增长，但没有标准化的措施来评估美国提供的PPHC@Home是否满足儿童及其家庭的需求和优先事项。我们使用多方法，多利益相关者的方法开发并进行了初步评估家庭报告的PPHC@Home经验的测量。我们的仪器开发过程包括四个阶段。项目识别和开发（第1阶段）涉及对现有工具、指南、实践标准和PPHC@Home结果研究的全面文献检索，以及PPHC利益相关者小组的指导。第2阶段涉及最初的项目优先级和减少使用离散选择实验（DCE）与PPHC专业人员和家长的倡导者。第三阶段涉及第二次DCE，丧亲父母和目前正在接受孩子照顾的父母进一步优先考虑和筛选项目，以获得一组最有价值的项目。最后，我们对家长进行了认知访谈，以提供有关新开发的工具（第4阶段）的内容有效性和清晰度的信息。项目主要是根据三项现有文书汇编的。第2阶段的参与者包括34名PPHC提供者，研究人员和家长倡导者;第3阶段的参与者包括47名家长;第4阶段的参与者包括11名家长。在第四阶段完成时，家庭儿童和照顾者姑息和临终关怀的经验（经验@家庭）措施包含22个最有价值的项目，用于评估PPHC@家庭。这些项目包括“护理团队治疗我孩子的身体症状，使我的孩子有尽可能好的生活质量”，“我可以定期获得我们护理团队的随叫随到服务”，以及“护士有知识，技能和经验来支持我的孩子在家里的姑息治疗或临终关怀。EXPERIENCE@Home测量是第一个专门测量美国家庭报告的PPHC@Home体验的方法。未来的工作将包括对更大样本的父母进行正式的心理测量评估，以及对PPHC@Home团队的临床实用性进行评估。在线版本包含补充材料，可通过10.1186/s12904-020-00703-0获得。
Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include “The care team treats my child’s physical symptoms so that my child has as good a quality of life as possible”, “I have regular access to on-call services from our care team”, and “The nurses have the knowledge, skills, and experience to support my child’s palliative or hospice care at home.” The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams. The online version contains supplementary material available at 10.1186/s12904-020-00703-0.
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影响因子：
4.7
作者：
Casarett, DJ;Crowley, R;Hirschman, KB
通讯作者：
Hirschman, KB
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：
8
作者：
Feudtner, C;Hays, RM;Koepsell, TD
通讯作者：
Koepsell, TD
影响因子：
4.7
作者：
Addington-Hall, J;McPherson, C
通讯作者：
McPherson, C
影响因子：
8
作者：
Feudtner, Chris;Kang, Tammy I.;Wolfe, Joanne
通讯作者：
Wolfe, Joanne