International Centre for Evidence in Disability, Department of Population Health, London School of Hygiene and Tropical Medicine, London, UK
MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda.
BMJ Open. 2023 Sep 28;13(9):e074217. doi: 10.1136/bmjopen-2023-074217.
On average, people with disabilities face many difficulties in accessing healthcare and experience worse health outcomes. Yet, evidence on how to overcome these barriers is lacking. Participatory approaches are gaining prominence as they can generate low-cost, appropriate and scalable solutions. This study protocol is for the pilot testing of the co-created Participatory Learning and Action for Disability (PLA-D) groups to assess feasibility.
We will pilot test PLA-D in five groups in Luuka district, Uganda during 2023. Each group will include approximately 20 members (people with disabilities, family members, carers) who will meet every 2-3 weeks over a 9-11 month period. The groups, guided by a trained facilitator, will identify issues about health and healthcare access and plan and implement locally generated solutions (eg, raising awareness of rights, advocacy and lobbying, establishing health savings and financing schemes). We will collect diverse sources of data to assess feasibility: (1) in-depth interviews and focus group discussions with group participants, non-participants and group facilitators; (2) monitoring of group activities; (3) direct observation of groups and (4) quantitative survey of group participants at baseline and endline. Data analyses will be undertaken to assess feasibility in terms of: acceptability, demand, implementation and practicality. We will develop and refine evaluation tools in preparation for a future trial.
Ethical approval for the study has been received by the London School of Hygiene & Tropical Medicine and the Uganda Virus Research Institute ethics committees. Informed consent will be obtained from all study participants, making adaptations for people with disabilities as necessary. We will reach different groups for our dissemination activities, including (1) people with disabilities (eg, community meetings); (2) policy and programme stakeholders in Uganda and international (eg, individual meetings, evidence briefs) and (3) academics (journal articles, conference/seminar presentations).
平均而言，残疾人在获得医疗保健方面面临诸多困难，健康状况也更差。然而，缺乏克服这些障碍的证据。参与式方法越来越受到重视，因为它们可以产生低成本、合适且可扩展的解决方案。本研究方案是针对共同创建的参与式学习和残疾行动（PLA-D）小组的试点测试，以评估其可行性。
我们将在 2023 年期间在乌干达卢卡区的五个小组中试点测试 PLA-D。每个小组将包括大约 20 名成员（残疾人、家庭成员、照顾者），他们将在 9-11 个月的时间内每隔 2-3 周会面一次。在经过培训的协调员的指导下，这些小组将确定有关健康和医疗保健获取的问题，并计划和实施本地生成的解决方案（例如，提高对权利的认识、宣传和游说、建立健康储蓄和融资计划）。我们将收集各种来源的数据来评估可行性：（1）对小组参与者、非参与者和小组协调员进行深入访谈和焦点小组讨论；（2）监测小组活动；（3）直接观察小组；（4）在基线和终点对小组参与者进行定量调查。将进行数据分析，以评估可行性，包括：可接受性、需求、实施和实用性。我们将制定和完善评估工具，为未来的试验做准备。
该研究已获得伦敦卫生与热带医学院和乌干达病毒研究所伦理委员会的批准。将从所有研究参与者那里获得知情同意，必要时为残疾人做出调整。我们将为不同的群体开展传播活动，包括（1）残疾人（例如，社区会议）；（2）乌干达和国际的政策和方案利益相关者（例如，个人会议，证据简报）；（3）学术界（期刊文章，会议/研讨会演讲）。
