Fellow: Dr. Lauren Sham

Supervisor: Dr. Archana Patel

Our project focuses on establishing a community health worker (CHW) outreach program in order to help improve stigma surrounding children with epilepsy in Zambia, focusing particularly on rural and peri-urban communities who are often the last to access medical care. Our program is based upon knowledge translation to CHWs, with a plan to have them follow and connect with families with children with epilepsy to review epilepsy education, address common misconceptions and emphasize medication compliance and follow up with clinic. Outcomes will be assessed by pre and post intervention clinic questionnaires and community focus groups in the intervention site (Linda compound), compared with focus groups at a control site (Livingstone).

Activities completed:

  • Helped develop epilepsy education program training guide and presentation slides for local team leads (Prisca Kalyelye and Harriet Chonga) to carry out CHW training
  • rained local team leads on training materials to ensure that they would be able to adequately train local CHWs
  • Coordinated translation of CHW booklet in English to local dialects (Nyanja and Bemba)
  • Developed follow up forms that CHWs would fill out at each family visit -Helped develop a questionnaire to be given to families with children with epilepsy at clinic (Neri Clinic or Mt. Makulu) before and after the CHW program
  • Conducted a focus group in Livingstone (control site) with local women to establish general understanding of knowledge and attitudes toward epilepsy in children
  • Facilitated transcription and translation from local dialects (Nyanja and Bemba) to English of focus group recordings 
  • Learning points: learned about the coordination and implementation of a CHW model in the rural/peri-urban community of Linda compound, learned and carried out the process of "training the trainers" with regards to the CHW epilepsy education program, learned about focus group facilitation with the aid of a local moderator

Training of 10 CHWs was successfully completed (performed by Prisca Kalyelye and Harriet Chonga), with each CHW passing a post-workshop assessment. Families are being identified in the intervention site (Linda compound) for the program. A focus group was also conducted in Linda compound prior to the intervention to establish knowledge and attitudes toward epilepsy in children prior to the CHW program.

Activities ongoing/pending:

  • Each CHW will be assigned 4 families to follow, with each CHW visiting each family every 2 weeks for 10 months. Each family will be assigned a booklet (English, Nyanja or Bemba) and visits will be tracked and submitted electronically
  • Dr. Sham will be coordinating monthly team meetings with the Zambia team, as supervised by Dr. Patel, to follow progress
  • Prisca and Harriet will conduct monthly refresher training for CHWs
  • Lauren will return in July 2020 for a site visit to assess progress and perform another CHW refresher training session
  • Follow up clinic questionnaires after the intervention will be completed, collected and analyzed -Follow up focus groups (planned for October 2020) will be conducted and transcripts analyzed to assess impact on the community
  • Ultimate goal is to determine feasibility and impact of CHW epilepsy program in conjunction with the Zambian Ministry of Health to see whether this is a sustainable and effective program that can be implemented in other regions in Zambia