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

儿科姑息治疗设施的缺乏继续对患癌症的儿童的健康产生不利影响。儿童在健康方面缺乏代表性和发言权更是雪上加霜。除了资助研究生进行实证、科学的数据收集和分析方法的培训外，这个博士论文项目还提供了一项关于儿童护理概念化的科学分析，涉及社会文化差异和影响社区成员、照顾者和患者日常生活的历史环境。通过研究儿童参与姑息治疗实践的情况，本论文项目将传播其数据和结果，以影响卫生干预措施的提供，使其更加敏感和适合儿童的特定需求。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。这篇博士论文研究项目考察了儿童在儿科姑息治疗中的经历，以确定他们如何产生个人护理的意义。它有三个主要目标：(1)记录接受姑息治疗的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做法；以及(3)调查社会文化因素如何影响照顾者对姑息护理的看法和做法。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性素描)，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。数据将被主题编码和分析，以了解儿童如何与姑息护理实践互动，以及社区社会价值观是否可能塑造不同的护理理念。这项研究对儿童在健康中的作用的人类学理论做出了贡献，并改进了照顾的理论，以解释更多不同的经历。这一奖项反映了NSF的法定使命，并通过使用基金会的智力优势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.