拉丁美洲儿童癌症治疗中的家长参与和能动性：一项定性研究。
Parent Engagement and Agency in Latin American Childhood Cancer Treatment: A Qualitative Investigation.
作者信息
Olarte-Sierra María Fernanda, Rossell Nuria, Zubieta Marcela, Challinor Julia
机构信息
Independent Medical Anthropology Researcher, Bogotá, Colombia.
Independent Researcher, El Salvador.
出版信息
JCO Glob Oncol. 2020 Nov;6:1729-1735. doi: 10.1200/GO.20.00306.
PURPOSE
Parent engagement in childhood cancer treatment is central for positive outcomes. Aspects of fruitful engagement have been described mainly in high-income countries (HICs) where family autonomy is valued, health care provider-patient relationships are less hierarchical, and active family participation in health care is welcomed. In many low- and middle-income countries (LMICs), these aspects are not always valued or encouraged. We explored childhood cancer treatment engagement in Latin America as part of a larger engagement study in 10 LMICs worldwide.
METHODS
A qualitative investigation was conducted with parents (with the exception of one grandmother and two aunts in loco parentis; n = 21) of children with cancer in El Salvador, Peru, and Mexico. Participants were recruited by two Childhood Cancer International foundations and two local hospitals. A pediatric oncology psychologist and a medical anthropologist (experienced, native Latin Americans researchers) conducted focus-group discussions and in-depth interviews that were recorded and transcribed, and analyzed data.
RESULTS
Parents in the three countries actively engage in their child's treatment, despite challenges of communicating effectively with health care staff. Hierarchical health care provider relationships and generalized socioeconomic disparities and cultural diversity with health care staff notwithstanding, parents find ways to navigate cancer treatment by exerting their agency and exploiting resources they have at hand.
CONCLUSION
In Latin America, engagement materializes in ways that are not necessarily reflected in existing literature from HICs and, thus, engagement may seem nonexistent. Health care teams' recognition of parents' substantial sacrifices to adhere to complex demands as treatment engagement, may positively impact the children's (and family's) quality of life, treatment experience, adherence, and posttreatment circumstances.
目的
家长参与儿童癌症治疗对于取得积极治疗效果至关重要。富有成效的参与的各个方面主要在高收入国家（HICs）得到了描述，在这些国家，家庭自主权受到重视，医护人员与患者的关系等级性较低，并且欢迎家庭积极参与医疗保健。在许多低收入和中等收入国家（LMICs），这些方面并不总是受到重视或鼓励。作为一项在全球10个低收入和中等收入国家开展的更大规模参与度研究的一部分，我们探讨了拉丁美洲儿童癌症治疗中的家长参与情况。
方法
对萨尔瓦多、秘鲁和墨西哥的癌症患儿家长（除了一位祖母和两位代行父母职责的阿姨；n = 21）进行了定性调查。参与者由两个国际儿童癌症基金会和两家当地医院招募。一名儿科肿瘤心理学家和一名医学人类学家（经验丰富的拉丁美洲本土研究人员）进行了焦点小组讨论和深入访谈，对访谈进行了录音、转录并分析数据。
结果
尽管在与医护人员有效沟通方面存在挑战，但这三个国家的家长都积极参与孩子的治疗。尽管医护人员关系存在等级性，且存在普遍的社会经济差距和文化多样性，但家长通过发挥自身能动性并利用手头的资源，找到了应对癌症治疗的方法。
结论
在拉丁美洲，家长参与以不一定在高收入国家现有文献中体现的方式得以实现，因此，家长参与可能看似不存在。医护团队认识到家长为满足复杂要求而做出的巨大牺牲就是治疗参与，这可能会对儿童（及其家庭）的生活质量、治疗体验、依从性和治疗后状况产生积极影响。
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