Neurological disorders present public health challenges globally with the health burden being greater than some infectious diseases. These challenges are even greater when considering hereditary neurological diseases that cause premature death, severe disability and loss of productivity, resulting in high health care costs. Although most are currently untreatable, increasing awareness and community engagement about hereditary neurological disorders can reduce the burden. Additionally, to understand the mechanism of all genetic disorders and come to therapeutics, there is a need to discover all disease-causing genes.

This project, led by the University of Sciences, Techniques and Technologies of Bamako, Mali, sought to to clinically characterise hereditary neurological disorders in Mali in order to establish a comprehensive clinical description of the diseases in this region. The Malian population has a high rate of polygamous and consanguineous marriage. In this setting, mothers with children with recessive diseases are often stigmatised as having a “bad fate”. In many cultures such as in Mali, people favour boys more than girls, leading to a discrimination in their care, especially in economically limited populations. Previous studies have found that women are more prone to present depression or anxiety disorders, multiplying the disease burden substantially. It is likely that Malian women dealing with hereditary disorders are more susceptible to psychiatric disorders due to the surrounding social factors and the limited knowledge about genetic diseases.

Project Strategy

  • Enroll families with and without hereditary neurological disorders; collect demographical data and perform routine clinical and laboratory testing to accurately assess the condition of patients
  • Perform genetic sequencing to identify genes associated with neurological disorders
  • Community Engagement (CE) activities and conferences in high schools to explain the protocol and some basic genetic principles and expose and interest the young generation to science

Community Engagement

The goal of the CE activities was to identify the clinical, social and behavioural features linked to the psychosocial effect of these neurological disorders and identify associated factors in order to provide preventive and therapeutic approaches that could be applied to other culturally similar populations.

The project used qualitative and quantitative methods and the survey team included expertise in Social Anthropology, Public Health, Psychology, Psychiatry and Clinicians. Before starting our study the team held some initial meetings with the administration and the community leaders, and local council elders from different areas of the study. The villages were selected and the number of Focus Groups and those within the groups was based on the local population and prevalence of neurogenic disease. The patients came from the following regions: Koulikoro, Kayes, Mopti, Sikasso, Mopti and the district of Bamako.

The activities also included individual interviews with the sick parents, as well as a general meeting with the members of the community under the control of the chief of the village, the religious head, the study PI and the community engagement team. Through examination, interviews and public community engagement sessions, the work has contributed to restoring a good atmosphere in some families for health well-being, developed behavioural interventions to reduce risk for consanguinity marriage and alleviated the stigma and exclusion whatever gender or ethnicity within their communities.

Collaboration and active involvement

Active involvement is necessary, and was achieved through encouraging the community leaders to interact with the project team. The aim was for this process to help fight the stigmatisation, support findings feedback and the social issues. It is essential to train the community relays to attract more people to tackle this for the benefit of our communities. The team worked closely with the community leaders to reinforce active involvement from the local population.

Key collaboration was also with the Malian ethical committee, H3Africa Working Group, the community leaders, the patients and their families, clinicians, traditional communicators, the funders, and Mediaspaper and audio visual to make sensitive TV about genetic diseases.

Challenges

The main challenges were; finding a solution to findings feedback; significantly reducing the stigmatisation of neurogenic disorders, ensuring durability the community engagement; and following an ethical process with the community. It was also challenging to write a multicentre project on community engagement for Ghana, Mali and Burkina Faso.

Lessons learnt and recommendations

  1. Gaining the support of funders to implement community engagement in a developing country in sub-Saharan Africa
  2. A multicentre grant on community engagement in Africa, involving multiple funders (e.g. Wellcome Trust, NIH)
  3. The need for Genetic Counsellor training
  4. Providing training to girls and women in high school and universities will help reinforce women’s health advocacy groups, especially in genetic disorders
  5. Encouraging collaboration between the focal points of the CE work within the research projects, the CE Working Group, as well as the ethical process and feeding back the findings

Evaluation

  • To set guidance on evaluation with the CE Working Group to support H3Africa researchers with how they should ensure good practice in CE
  • To create some criteria to evaluate the stigmatisation on neuro-genetic disorders and others diseases before and after CE
  • Forming a CE evaluation team with H3Africa CE Working Group and according to the cultural and health systems of each country member in the group

This report is part of the H3Africa: Engagement with Genetics and Genomics Programme Hub

 

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