A community is described as “a group of people that interact and support each other, and are bounded by shared experiences or characteristics, a sense of belonging, and often by their physical proximity”.1 Researchers, communities, funders, and regulatory agencies have advocated for increased involvement of the community in the research process. This is aimed to improve research efficiency and improve the protection of the research participants.2 The two most common approaches that focus on community involvement in research include community based participatory research (CBPR) and participatory action research (PAR). CBPR is defined as a process of inclusive participation in research in which academic researchers and community stakeholders work together to create a partnership that extends from the time before a research project begins to after its completion.3 Participatory action research is defined as a process where communities take full responsibility of their own health and own the research process.2 These approaches may not apply in all studies. However, in this article, I argue that where research outcomes are planned to impact a specific vulnerable community, this community should be fully involved in that research, not just as participants but also as co-researchers. I will use the experience my colleague and I have gained, whilst assisting with the proposal development for a study being conducted at Tsako Thabo secondary school in Mamelodi, as a reference.
The University has a long-standing relationship with Tsako Thabo secondary school, through the engineering and architecture department. The occupational therapy department started working with the school in 2022. The school of health care sciences’s community engagement committee has been developing a protocol looking at the knowledge, attitudes, and practices of secondary school learners regarding substance use and sexual health. We were an integral link in the protocol development, to ensure community participation.
According to Fregonese2, there are three different ways in which researchers can involve the community: consulting the community in different stages of the research process; community representation during the research process; and long-term complex partnership. This has been applied within this specific research proposal development in the following ways: Firstly, the school leadership (principal and teachers) have been consulted about the intended research project. One of the schoolteachers volunteered to become a co-researcher on the project. Additionally, COSUP management was consulted, who also requested the involvement of COSUP peers and social workers as co-researchers. Two peers and one social worker volunteered.
Secondly, the school learners have been asked to provide feedback on the methodology, including the informed consent and assent forms and the questionnaire. Even though the academics had initially proposed to use only an electronic platform (computer laboratories) for the data collection, the learners were concerned about those who would not be able to use computers. Therefore, a hybrid form of data collection will be posited. Secondly, the learners provided suggestions to establish credibility with the learners and ensure that they answer the questionnaire truthfully. They suggested that the research team, before introducing the questionnaire to the learners, should clearly explain to them that their responses will be anonymous and how researchers will ensure confidentiality of each respondent to gain their trust. Otherwise, they indicated, the learners would not complete the questionnaire truthfully and the information gained would not be an honest representation from the learners.
The learners serve as providing additional protection for ethical conduct of the research. They can critically judge the appropriateness and relevance of the questions of the data collection method and provide feedback, identify risks, add relevant information, and assess whether the method of data collection is relevant and appropriate for the participants looking at their context. If the community is not consulted as part of the research proposal development, this can potentially lead to mistrust; a lack of acceptance of the research by the community; lack of respect from colleagues; interruptions in piloting the research; providing culturally unacceptable information and that the recommendations and interventions provided after the research is complete will be poorly accepted by the community. However, it is important to remember that this when may take time, since some of the community stakeholders may not have knowledge about research. Researchers must firstly familiarize the community stakeholders with the research process.
By involving the community in research, this also increases the efficiency of the study looking at recruiting participants. When community stakeholders are informed about the research through appropriate community entry and existing partnerships, they will assist the researchers in aspects such as identifying more suitable research participants, getting a buy-in from the individual participants and consent from community leaders. It will also assist in the logistics of organizing meetings where the community is updated on the progress of the research. By doing this, the usage of research results after research is completed is encouraged and thus proposed interventions can be developed together with the community leading to greater sustainability.
Community members and researchers often come from diverse cultural backgrounds, and thus involving the community in the research is beneficial as it will build a trusting relationship between the researcher and the population; and show respect to those affected by the research.
In conclusion, involving the community in research results in high quality research and sustainable research projects as the community feels like the “owners” of the research process.
1. Cobigo V, Martin L, Mcheimech R. Understanding Community. Can J Disabil Stud. 2016;5(4):181.
2. Fregonese F. Community involvement in biomedical research conducted in the global health context; What can be done to make it really matter? BMC Med Ethics. 2018;19(Suppl 1).
3. Gehlert S, Cancer P, Study B. Community-Based Participatory Research Community-Based Participatory Research - Social Work - Oxford Biblio ... Community-Based Participatory Research. 2015;(June 2012).
- Author By Rapolai Boitumelo (fourth year occupational therapy student) and Judith Mahlangu (community liaison)