The goal of community involvement in health research is to improve a community’s ability to address its own health needs while ensuring that researchers understand and consider the community’s priorities. Recent data show that socio-economic and environmental challenges continue to be a barrier to informing, consulting, involving and empowering communities in community-based health research beneficial to them. The aim of this study was to assess the extent to which the Ingwavuma community in KwaZulu-Natal Province, in rural South Africa, was informed, consulted, involved and empowered about two research projects conducted between 2014 and 2021.
The study used the modified random-route procedure to administer a standardized questionnaire to 339 household heads selected randomly. The questionnaires were administered face-to-face. The sample size was estimated using the Yamane sample size generating formula. Chi-square tests were performed to assess associations between demographic variables (age, gender, education, village) and respondents’ knowledge and information of the projects, Malaria and Bilharzia in Southern Africa and Tackling Infections to Benefit Africa as well as their participation.
The communities were generally well-informed about the health projects that were being carried out. Fewer than half of those who had heard about the projects had directly participated in them. The majority had been tested for one or more diseases and conditions, mostly high blood pressure, diabetes, and schistosomiasis, and had participated in a community feedback group; many had given their children’s permission to be tested for schistosomiasis or to participate in project research activities. Others participated in public awareness campaigns and surveys. There was some evidence of a consultation process in the form of public consultation discussed in the projects, and not much discussion on empowerment.
The findings demonstrate that researchers’ CE approach was adaptable as communities were largely educated, involved, and subsequently empowered though without much consultation and that researchers had provided a space for sharing responsibilities in all engagement process decision-making. For the empowerment of the community, projects should take into account the intrapersonal and personal aspects affecting the community’s capacity to effectively benefit from the information, consultation, involvement, and empowerment procedures.