Wademan Dillon T, Hunleth Jean, Simwinga Musonda, Mahbub Tahiya, Bernays Sarah, Hoddinott Graeme, Daftary Amrita
Desmond Tutu TB Centre, Department of Paediatrics and Child Health, Faculty of Medicine and Health Sciences, Stellenbosch University.
Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine in St. Louis.
Curr Trop Med Rep. 2024 Sep;11(3):126-134. doi: 10.1007/s40475-024-00323-1. Epub 2024 Jun 19.
Despite evidence of the benefits of including children's voices in global health research, they continue to be underrepresented. Implementation of how to include children's voices appears to remain an obstacle to their inclusion in global health research. In this manuscript, we present an epistemological frame that advocates children as experts of their own experiences and knowledge-bearers. Then we provide four case studies, to illustrate ongoing efforts to build equity in the design and execution of paediatric health research.
Ensuring children's equitable inclusion requires recognizing them as active participants in their health and wellbeing, and empowering them to employ their agency in all interactions with researchers, while recognizing the dialogical nature of those interactions. Successfully involving children in global health research can lead to important psychosocial and clinical insights, that could be leveraged to inform future treatment and care practices.
We present four case studies describing the inclusion of children in research and research development related to prevention, treatment and/or care of chronic and acute diseases (tuberculosis, HIV, cervical and other forms of cancer) in a number of global settings including India, Philippines, South Africa, United States, Zambia. The exemplars detail novel applications of a diversity of arts-based methods that are rooted in frameworks for participatory action research. They highlight the need to invest funds, training, time and resources for early and sustained engagement with children throughout the research process. We conclude by offering principles for equitably engaging children in global health research.
尽管有证据表明在全球卫生研究中纳入儿童声音有诸多益处，但儿童在其中的代表性仍然不足。如何纳入儿童声音的实施问题似乎仍是儿童参与全球卫生研究的障碍。在本手稿中，我们提出了一个认识论框架，倡导儿童作为自身经历的专家和知识承载者。然后我们提供四个案例研究，以说明在儿科卫生研究的设计和实施中为建立公平性所做的持续努力。
确保儿童得到公平纳入需要将他们视为自身健康和福祉的积极参与者，赋予他们在与研究人员的所有互动中运用自身能动性的权力，同时认识到这些互动的对话性质。成功让儿童参与全球卫生研究可带来重要的社会心理和临床见解，可用于为未来的治疗和护理实践提供信息。
我们呈现四个案例研究，描述了在包括印度、菲律宾、南非、美国、赞比亚在内的多个全球背景下，儿童参与与慢性和急性疾病（结核病、艾滋病毒、宫颈癌和其他形式癌症）的预防、治疗和/或护理相关的研究及研究开发情况。这些范例详细介绍了基于多种艺术方法的新颖应用，这些方法植根于参与式行动研究框架。它们强调需要投入资金、培训、时间和资源，以便在整个研究过程中尽早并持续地与儿童接触。我们最后提出了让儿童公平参与全球卫生研究的原则。
