Project 3 — Kenya Caregiver Support & Digital Innovation Study

Brief description This study investigates the support needs, seizure first-aid knowledge, psychological burden, and digital health readiness of family caregivers of people living with epilepsy in Kenya. Caregivers — most commonly mothers and grandmothers — manage complex seizure conditions at home with limited formal guidance and minimal structured support. Their experiences and information needs have rarely been systematically mapped in this context. The study has two interwoven components. First, a cross-sectional mixed-methods study using a structured questionnaire and qualitative interviews to map caregiver needs. Second, the design, deployment, and pilot of a WhatsApp-based digital health tool delivering seizure first-aid guidance, medication support, and wellbeing resources in English and Kiswahili. The pilot evaluates acceptability, usability, and engagement, and analyses anonymous user questions logged during the pilot to identify recurring information needs. This study is one part of a wider three-project programme on epilepsy care and access in sub-Saharan Africa, led by Dr. Phyllis Kimani. Principal Investigator Dr. Phyllis Kimani, MPharm, UK and Kenya Qualified Pharmacist Collaborators Research Lead being appointed via a recruitment process currently underway. Kenya-based research team and confirmed clinical recruitment partner in Nairobi (named in the protocol attached to this registration). Study design Mixed-methods, cross-sectional observational study, followed by a feasibility pilot of the digital health tool with caregivers. Study population Family caregivers (18+) of people living with epilepsy in Kenya, providing care for at least six months. Community-level healthcare workers (e.g. community health volunteers, primary-care nurses, frontline outreach staff) as a secondary cohort — a distinct group from the clinical and specialist healthcare workers recruited under Project 2. Setting / location Nairobi, Kenya. Primary clinical recruitment partner confirmed; additional sites pending confirmation. Contingency recruitment via social media, support-group networks, and community health channels included in the protocol. Sample size • Caregiver survey: 100–120 participants. • Healthcare worker survey: 20–30 participants. • Chatbot pilot: 60–80 caregivers drawn from the survey cohort. Inclusion criteria Family caregivers aged 18+, providing care for at least 6 months to a person with confirmed epilepsy diagnosis, resident in Nairobi or surrounding counties, English- or Kiswahili-speaking. Exclusion criteria Under 18; paid professional caregivers; caregivers where the epilepsy diagnosis is unclear; inability to provide informed consent. Data collection methods • Structured questionnaire delivered via Google Forms and in-person (English and Kiswahili). • Semi-structured qualitative interviews with a subset of caregivers. • Validated instruments: Zarit Burden Interview – Short Form (ZBI-12), PHQ-9, GAD-7, adapted digital readiness items. • Purpose-built 10-item seizure first-aid knowledge quiz. • Anonymous question log from the WhatsApp chatbot during the pilot phase — no personally identifiable information stored. • Post-pilot usability and acceptability survey for chatbot pilot participants. Analysis plan Descriptive and inferential analysis of survey data, with subgroup analysis by demographic characteristics. Thematic analysis of qualitative interview transcripts and chatbot question logs. Mixed-methods integration of findings. Usability and acceptability analysis of the chatbot pilot. Digital intervention details • Platform: WhatsApp Business API, with secondary mobile-friendly web chat interface. • AI engine: OpenAI API (GPT-4o or GPT-4o-mini). • Languages: English and Kiswahili, with language selection at session start. • Content scope: seizure first-aid guidance, general medication adherence, caregiver wellbeing support, plain-language epilepsy education. • Excluded content: diagnosis, dose-specific medication advice, emergency handling without clear redirection to emergency services. • Built with capacity for up to 300 pilot users. Anonymous question logging only. Ethics Ethics approval is being sought from AMREF ESRC (preferred route) alongside a NACOSTI research license. Both the survey and the chatbot pilot are being submitted within a single application to avoid mid-project amendments. Application status: in preparation. Approval reference will be added to this registration once granted. Funding Programme-level funding being sought; this registration does not commit any specific funder. Chatbot build commissioned and funded as part of the programme. Anticipated start date Anticipated within 4–8 weeks of ethics submission, subject to approval. Anticipated end date Approximately five months after start of recruitment, plus a 24-month follow-on period for publications and follow-up analysis. Status In planning; ethics submission in preparation. Planned outputs • Peer-reviewed journal manuscript on caregiver support needs and digital readiness. • Conference abstract and poster. • Chatbot pilot usability and acceptability report. • Digital health innovation framework document, transferable to other research teams. • Partnership materials for NGOs, health ministries, and epilepsy organisations. Keywords epilepsy; caregivers; seizure first aid; digital health; mHealth; WhatsApp; chatbot; Kenya; sub-Saharan Africa; mixed methods; pilot study