Muhimbili National Hospital, Research and Consultancy Unit, Dar es Salaam, United Republic of Tanzania.
Department of Women's and Children's Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala, Sweden.
Cancer Med. 2024 Jul;13(14):e70034. doi: 10.1002/cam4.70034.
Public contribution in research can lead to the design and conduct of more feasible and relevant research. However, our understanding of the acceptability and feasibility of public contribution and the evidence base regarding its impact in low- and middle-income countries (LMICs) is limited.
In this study protocol, we describe a mixed-method examination of public contribution activities in the GuardiansCan project. The GuardiansCan project aims to respond to Tanzanian guardians' poor adherence to children's follow-up care after treatment for acute lymphoblastic leukemia (ALL) with the help of Mobile Health technology. We aim to: (1) involve guardians of children treated for ALL as Guardians Advisory Board (GAB) members in the managing and undertaking, analysis and interpretation, and dissemination phases of the GuardiansCan project; and (2) examine the acceptability, feasibility, and perceived impact of GAB members' contribution to the GuardiansCan project from the perspective of the GAB members and public contribution coordinators. We will recruit six to eight guardians of children treated for ALL to the GAB. We will hold workshops where GAB members contribute to all project phases. Using impact logs, we will record GAB workshop activities and the perceived impact of these activities. We will interview GAB members and public contribution coordinators 6 months after establishing the GAB, and at the end of each study within the project, to examine the acceptability, feasibility, and perceived impact of public contribution activities.
We expect GAB contribution to increase project quality and relevance, and inform how to best embed public contribution in research in LMICs.
公众参与研究可以促进更可行和相关的研究的设计和开展。然而，我们对公众参与的可接受性和可行性以及其在中低收入国家（LMICs）的影响的证据基础的理解是有限的。
在本研究方案中，我们描述了对 GuardiansCan 项目中的公众参与活动的混合方法研究。GuardiansCan 项目旨在通过移动健康技术，帮助坦桑尼亚的监护人在治疗儿童急性淋巴细胞白血病（ALL）后更好地坚持儿童的后续护理。我们的目标是：（1）让 ALL 治疗患儿的监护人作为 Guardians Advisory Board（GAB）成员参与 GuardiansCan 项目的管理、实施、分析、解释和传播阶段；（2）从 GAB 成员和公众参与协调员的角度，检查 GAB 成员对 GuardiansCan 项目的贡献的可接受性、可行性和感知影响。我们将招募六到八位 ALL 治疗患儿的监护人加入 GAB。我们将举办研讨会，让 GAB 成员参与项目的所有阶段。我们将使用影响记录来记录 GAB 研讨会的活动以及这些活动的感知影响。我们将在 GAB 成立后 6 个月以及项目内的每个研究结束时，对 GAB 成员和公众参与协调员进行访谈，以检查公众参与活动的可接受性、可行性和感知影响。
我们预计 GAB 的贡献将提高项目的质量和相关性，并为如何在 LMICs 中最好地将公众参与纳入研究提供信息。
