Doctoral Dissertation Research: Navigating Care: A Study of Pediatric Cancer Patients undergoing Palliative Care

儿童姑息治疗设施的缺乏继续对患癌症儿童的健康产生负面影响。由于缺乏儿童在卫生方面的代表和声音，情况进一步恶化。除了为研究生的经验、科学数据收集和分析方法的培训提供资金外，该博士论文项目还提供了与社会文化差异和历史环境相关的儿童护理概念的科学分析，这些社会文化差异和历史环境影响着社区成员、护理人员和患者的日常生活。通过检查儿童与姑息治疗实践的参与，本论文项目将传播其数据和研究结果，以影响健康干预措施的提供，使其更敏感，更适合儿童的具体需求。该项目还扩大了历史上代表性不足的群体对科学知识生产的参与。本博士论文研究项目考察儿童与儿科姑息治疗的经验，以确定他们如何产生护理的个人意义。它有三个主要目的：(1)记录姑息治疗儿童癌症患者的生活经历，并检查他们与护理提供者的日常互动；(2)检查护理提供者如何管理和从事姑息治疗的实践；(3)研究社会文化因素如何影响照顾者对姑息治疗的认知和实践。为了实现这些目标，研究人员将整合视觉方法（如基于艺术的方法、参与式摄影、参与式照片启发和观察素描），并进行民族志观察、半结构化访谈、焦点小组讨论和档案研究。数据将按主题进行编码和分析，以确定儿童如何与姑息治疗实践相互作用，以及社区社会价值观是否会影响不同的护理理念。这项研究有助于儿童健康机构的人类学理论，并改善护理理论，以解释更多样化的经历。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。

The lack of pediatric palliative care facilities continues to negatively impact the health of children suffering from cancer. This is further compounded by a lack of children’s representations and voices in health. In addition to providing funding for the training of a graduate student in the methods of empirical, scientific data collection and analysis, this doctoral dissertation project provides a scientific analysis of children’s conceptualizations of care in relation to socio-cultural differences and historical circumstances which impact the everyday lives of community members, caregivers, and patients. By examining the engagement of children with palliative care practices, this dissertation project will disseminate its data and findings to impact the delivery of health interventions to be more sensitive and suitable for children’s specific needs. The project also broadens the participation of historically underrepresented groups in the production of scientific knowledge. This doctoral dissertation research project examines children’s experiences with pediatric palliative care to determine how they produce individual meanings of care. It has three primary aims: (1) to document the lived experiences of pediatric cancer patients with palliative care and examine their everyday interactions with care providers; (2) to examine how care providers administer and engage in practices of palliative care; and (3) to investigate how socio-cultural factors affect caregivers’ perceptions and practices of palliative care. To achieve these aims, the researcher will integrate visual methods (such as arts-based methods, participatory photography, participatory photo elicitation, and observational sketching) and conduct ethnographic observations, semi-structured interviews, focus group discussions, and archival research. Data will be thematically coded and analyzed to contextualize how children interact with palliative care practices, and whether communitarian social values may shape different ideas of care. This research contributes to anthropological theory on children’s agency in health and improves theorizations of care to account for a more heterogeneous range of experiences.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.