Community Engagement and Involvement in Tanzania

In February 2024, Parkinson’s Africa joined the TraPCAf team for a two-week trip in Tanzania, Hai District, as part of Transforming Parkinson's Care in Africa (TrapCAf), a NIHR funded study led by Newcastle University. One of the key objectives of the trip was to learn about the lived experiences of people living with Parkinson's disease and their carers, as well as to help establish Tanzania's first support group for people with Parkinson's disease and their carers, both of which were key objectives of work package 7 of the TraPCAf project.

A Community Engagement and Involvement (CEI) event and Kilimanjaro Parkinson’s Support Group

On February 24, 2024, the local team from Kilimanjaro Christian Medical Centre (KCMC) organised the first ever Community Engagement and Involvement event in Machame Hospital, Hai district, which was joined by the UK TraPCAf team. The objective of this event was to engage with people with Parkinson’s and their carers, explain the TraPCAf study, and learn about their lived experience and how to best support them. The event was highly anticipated by 19 PWPs and their carers, who showed high engagement and interest in participating in face-to-face support groups and eagerness to learn more and meet other people who are impacted by Parkinson’s disease. This led to the formation of the first ever support group for people with Parkinson’s disease and their carers in Tanzania.

On March 2, 2024, the Kilimanjaro Parkinson's Support Group was established in Tanzania for people with Parkinson's disease and their carers. The group, led by physiotherapy teams Matthew and Kelvin and one of the local doctors, Dr Jojet, included 14 patients and 15 carers. Attendees received a comprehensive booklet developed by Parkinson's Africa and IPDGC-Africa, as well as wellness materials developed by Dr Natasha Fothergill-Misbah in Swahili, containing information about Parkinson's disease, symptoms, diagnosis, and management. The workshop focused on learning and discussing Parkinson's disease symptoms, with teams being assigned to write down symptoms they knew or had heard about.

The support group continued with a walking football drill that included an educational message about Parkinson's disease and stigma from the walking football and Parkinson’s disease coaching manual. The game involved PwPs and carers playing football with equal-sized goals, with the red team losing two players and the goal increasing in size. The red team became weaker and gave up more goals during the game, which highlighted the negative effects of stigma on those with Parkinson's disease.

The next steps include regular support groups on the first Saturday of each month, better exercise programmes, and exposure to a wider variety of activities, such as walking football. The outcomes included training healthcare professionals on how to lead a support group, using the PMD Alliance Support Group Leader Reference Guide and Parkinson's Africa's Walking Football and Parkinson's disease manual, setting up Tanzania's first support group for Parkinson's patients, starting a WhatsApp group for Parkinson's patients and their carers, distributing instructional materials about Parkinson's disease in Swahili, delivering a successful Walking Football session, and utilising football and sports equipment as part of future sessions.

Stakeholders Event

On February 27, 2024, the TraPCAf Stakeholder Meeting in Moshi, Tanzania, aimed to raise awareness about Parkinson's disease, inform healthcare providers and policymakers about its implications in Africa, and invite these stakeholders to join forces. The meeting focused on raising awareness, educating the public, and addressing the community's tendency to overlook people with Parkinson's.

The findings revealed that Parkinson's disease has physical, emotional, social, and economic effects on individuals and communities. People suffer due to their lost physical ability, financial strain, loss of confidence, poor mental health, and personality changes. Furthermore, people ignore symptoms, attribute them to common old-age concerns, and fail to manage chronic diseases.

Overburdened community members complicate diagnosis and placement on the appropriate treatment pathway. Family members face stigma, ostracism, and conflict, as they struggle to cope and help their loved ones. To increase community awareness, village health professionals can improve education, disseminate information, and educate the public.

Radio campaigns, village leader training, and religious meetings can help raise awareness. Community support groups, self-management training for patients, and funding for training and education can provide support and care.

The policy-level priority for Parkinson's disease in Tanzania should include recognising and prioritising the disease, creating a clear pathway for care, prioritising access to drugs, education and awareness, funding, linking to stakeholders, and providing exemptions for those with Parkinson's. Most stakeholders have an established understanding of Parkinson's disease, and breakout groups provided valuable insights into individual, community, and medical issues. Key outputs include increased awareness and education about Parkinson's disease in Africa and its implications for individuals, their carers, communities, and society. Recommendations include distributing Swahili educational materials, providing training to village health professionals, designing campaigns, setting up support groups, strengthening pastoral care, and creating a patient advisory board to share patient feedback and improve care.

The TraPCAf team has also produced a short documentary about the impact medicines have on people with Parkinson's, which will be realised later this year.

It was a brilliant and highly impactful collaboration, and we look forward to supporting our colleagues in Tanzania as well as the other African countries that are part of the TraPCAf study and beyond in their tireless commitment and work towards providing pastoral support to people living with Parkinson’s disease and their carers, as well as raising awareness and educating the public about Parkinson’s disease.

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