Co-design of intervention strategies to increase physical activity in adolescents with epilepsy.

The World Health Organisation recommends Children complete an average of 60 minutes per day of moderate to vigorous intensity physical activity (PA). Adherence to these guidelines is important for physical and mental health and the prevention of chronic disease. However, children with epilepsy (CWE) are less likely to hit exercise guidelines compared to children without a chronic health condition (). Therefore, researchers have for evidence to support the design of physical activity interventions to address the challenges of PA engagement in this population.
Epilepsy is the most common serious neurological condition of childhood, and is associated with significant stigma, lower quality of life (QoL), increased mental health problems, and perceived lack of independence [Healey et al. 2020]. Existing barriers to participation in CWE include, safety precautions, parental/ paediatrician /teacher concerns about seizures and fatigue, social support and connections, intrapersonal self-regulation and motivation, and education surrounding the benefits and risks of PA in CWE [Wilfred et al., 2022].
Existing research has identified benefits of PA on seizure control, refuting preconceptions on the risks of exercise induced seizures. Arida et al., (2021) identified several mechanisms that can reduce seizure susceptibility and increase brain 'resilience' to seizures, including modulation of neurotransmitters and, neurotrophins and brain metabolism. Furthermore, a study evaluating the impact of a 35-week exercise intervention, identified a host of psychological benefits [Eom et al., 2016] including higher levels of self-confidence, motivation, self-assertion and reduced internalising behaviour across supervised and self-guided exercise. Furthermore, participation in group-based activity can improve social interaction and communication, as well as improve family dynamics [Engel-Yeger et al., 2014; Wilfred at al., 2022].
This PhD research will continue to consider the effects of exercise interventions for CWE and expand on existing studies by involving CWE, their families, school staff, and sports clubs in designing and implementing PA strategies. Despite the potential benefits, such collaborations have been underutilised in existing research. The aim of this PhD is to co-design, with CWE and key stakeholders, intervention strategies to increase PA among CWE, to identify how best to incorporate the strategies into self-management care plans.
Through a creative experience-based co-design (EBCD) approach, this PhD will invite stakeholders who are involved in paediatric epilepsy (i.e., service users (e.g., CWE (aged 11-15 years), parents, teachers) and service providers (paediatricians, epilepsy nurses), to a series of creative co-design workshops underpinned by the Double Diamond Design Approach, to (i) Discover, (ii) Define, (iii) Develop, and (iv) Deliver strategies to increase PA in CWE. EBCD is underpinned by participatory action research, narrative theory, learning theories, and design thinking [Bate et al. 2006], and workshop activities will include for example, creative story maps/boards, brainstorming, group discussions and case studies.
This PhD will be carried out in partnership with the ESRC Midlands Graduate School at Loughborough University supported and guided by a collaborative team of academic professionals (Colin Reilly, Natalie Pearson, Lauren Sherar). This PhD will explore and build key partnerships with Young Epilepsy, the only national charity exclusively focused on the needs of young people, facilitating our engagement with networks of CWE and stakeholders, recruitment and retention of participants, training in co-design methodologies and device measured PA, and expertise in epilepsy and its impact on a young person's life, and dissemination channels. The research collaboration will provide Young Epilepsy feasible interventions and implementation strategies to increase PA among this vulnerable population.