The successful performance of the first epilepsy surgery in Rwanda recently is a remarkable milestone for the country’s neurological care. While the first line of treatment for epilepsy is medication, an estimated 30% of patients continue to experience seizures even after taking recommended medicines. For these patients, surgery can offer a pathway to becoming seizure-free. Thus, this news calls for a well-deserved celebration. Nevertheless, it is important to note that epilepsy is a chronic condition that requires long term follow up. Therefore, this breakthrough provides an opportunity to reflect as a country on how to improve the quality of life of those at the frontlines of epilepsy care. Chief among these are caregivers such as parents, spouses, and relatives. Their responsibilities are expansive and it often includes responding to seizures, managing treatment routines, and providing emotional as well as financial support. Yet, despite their critical role, the challenges they face are often overlooked. High mental health burden Research has shown that caregivers of patients with chronic illnesses have a high risk of developing mental health conditions. In the case of epilepsy, it is estimated that around one in five parents caring for children with the condition have post-traumatic stress disorder (PTSD) and one in three live with depression. More alarming are the statistics for parents whose children have treatment-resistant seizures. Researchers from the Danish Epilepsy Centre found that 43.5% of these parents meet the criteria for one or more conditions including PTSD, depression, and anxiety. While more than half of spouses, whose partners have epilepsy, were found to be at risk of developing PTSD. Experiences of psychological distress can strain caregiver-patient relationships. This, in turn, may not only increase the severity of the patients’ seizures but also worsen caregivers’ mental wellbeing. Hence, it is critical that the needs of caregivers are also addressed. Strengthen social support A consistent finding in psychological research is that social support has a positive effect on mental health. This means that the risk of developing mental health conditions decreases significantly when caregivers are part of a supportive social network. One of most effective ways to facilitate this is through peer support groups. Here, individuals with shared experiences meet to discuss their challenges and exchange coping strategies. Rwanda has already demonstrated the benefits of adopting this approach through community-based interventions for genocide-related trauma like “Mvura Nkuvure” (Heal me, I heal you). Under this initiative, community members share personal experiences and support one another with guidance from trained counsellors. This program has been shown to reduce PTSD and depressive symptoms so a similar model could be adapted for epilepsy caregivers. Increase epilepsy awareness In parallel, investments must also be made in public awareness campaigns to dispel widespread myths and misconceptions about epilepsy. This is essential as lack of support for caregivers largely stems from stigma. Many patients and their family members are shunned by society due to false beliefs that epilepsy is contagious, a curse for moral failings, or a form of possession by evil spirits. To address such deep-seated stigma, age-appropriate education on epilepsy and other neurological disorders should be introduced into school curricula. The strategy would be akin to the approach taken for other high-burden diseases like HIV/AIDS, malaria and tuberculosis. This is apposite as epilepsy is the most common neurological disorder in Rwanda. Increased awareness may also have an added benefit of lowering epilepsy prevalence. While some cases are of unknown origin, many in Rwanda arise from preventable causes. This includes infections such as neurocysticercosis which is linked to the consumption of undercooked pork, cerebral malaria, and traumatic brain injuries caused by road traffic accidents. Knowing these risk factors can promote safer practices and reduce the overall burden of epilepsy. Expand special needs support Furthermore, recurrent seizures can cause brain damage. In severe cases, this may result in intellectual disabilities, motor limitations and behavioural difficulties. Such outcomes are often a major source of psychological distress for caregivers. This underscores the need for improving mental health services such as cognitive behavioural therapy. To increase accessibility, these services should be integrated in primary care so that patients presenting with epilepsy not only receive seizure management but also interventions for associated impairments. Caring for those who care While challenging, caregiving is not inherently a negative experience. Many caregivers take pride in supporting their loved ones and derive a strong sense of meaning from their role. Nonetheless, caregiving can take a significant psychological toll, making it essential that caregivers themselves are adequately supported and cared for. As the world today March 26 marks Purple Day, which is dedicated to raising epilepsy awareness, each of us has a role to play. This can be as simple as checking in on a friend, colleague, or family member that is supporting someone living with epilepsy. Those who care, deserve care too. Gloria Charite is a Rhodes Scholar and a PhD student in Clinical Neurosciences at the University of Oxford’s Centre of Global Epilepsy. For comment and feedback, please email charite.gloria@balliol.ox.ac.uk.
