Misconceptions about neurological conditions remain widespread in many communities, where epilepsy and Parkinson’s disease are sometimes attributed to curses or demonic possession. These beliefs can delay treatment, isolate families, and prevent people from seeking care.
To address these challenges, the Brain and Mind Institute (BMI) in collaboration with Newcastle University researchers hosted a week-long community engagement in Kaloleni and Mariakani, Kilifi County, bringing together more than 450 participants, including county government representatives, Community Health Promoters (CHPs), neurological experts and people living with epilepsy and Parkinson’s disease.
Held from February 22–28, 2026, the event marked the culmination of two years of research under the Canvas for Change study, which explores how creative approaches such as art can strengthen community understanding of neurological conditions.
Through co-created performances and guided discussions, complex medical information was transformed into relatable stories reflecting everyday experiences within the community. The performances created space for dialogue, helping participants challenge misconceptions and better understand neurological conditions.
Advancing global efforts to address neurological disorders
Parkinson’s disease in particular remains poorly understood in many communities. Early signs including tremors, stiffness, slowed movement and changes in speech, are often mistaken for normal ageing rather than symptoms requiring medical attention.
By translating clinical knowledge into culturally relevant storytelling, the engagement helped communities understand that both epilepsy and Parkinson’s disease are medical conditions that can be managed with appropriate care.
Dr Natasha Fothergill Misbah, Principal Investigator from Newcastle University, highlighted the value of creative engagement in improving awareness. “Parkinsons is more common than many people realise, yet its symptoms are often overlooked. Using art helps simplify complex information and creates opportunities for conversations that reduce stigma,” she said.
The study is contributing to global efforts led by the World Health Organization (WHO) through its Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders, which calls for improved awareness, reduced stigma and expanded access to care.
Dr Mary Bitta, Co-Principal Investigator of the study and Postdoctoral Fellow at BMI, emphasised the importance of empowering communities with accessible knowledge. “This study supports the WHO Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders. By using art to engage communities, we are helping Community Health Promoters recognise neurological conditions earlier and respond more effectively,” she said.
Lived experience bringing understanding
Hearing directly from people living with epilepsy and Parkinson’s disease was one of the most powerful aspects of the engagement.
“Having epilepsy does not stop me from pursuing my dreams. I hope our families and communities can learn from events like this, so they understand the condition, reduce stigma and ensure medicine is available when we need them,” said Sarah Chengo, a person living with epilepsy.
The event also highlighted the importance of partnerships between research institutions, county governments and community health systems in improving neurological care.
Dr Saumu Chuphy from the Ministry of Health, Kaloleni Sub-County, noted that strengthening community awareness is essential to improving early identification and referral. “We commend BMI for this initiative, which will help Community Health Promoters identify signs of epilepsy and Parkinson’s disease early and provide timely referrals, improving care within the community,” she said.
Strengthening community health systems
Community Health Promoters also strengthened their capacity to recognise symptoms, address misconceptions and guide families toward appropriate care.
“The art performances are an effective way to raise awareness. We can now demystify myths, identify real signs and know when and how to refer people living with epilepsy and Parkinson’s disease,” said Robert Mwangome, a Community Health Promoter in Kaloleni.
By combining research, community engagement and creative storytelling, the Canvas for Change study is helping lay the foundation for earlier diagnosis, reduced stigma and stronger community-centred neurological care in Kilifi County.
