Irene Farisai Muchada1, Jo M Wilmshurst2, Nakita Laing3, Elin Haf Davies4, Karen Fieggen5. 1. Division of Human Genetics and Department of Medicine, University of Cape Town South Africa, South Africa. Electronic address: farisai83@gmail.com. 2. Paediatric Neurology Department, Red Cross War Memorial Children's Hospital, Neuroscience Institute, University of Cape Town, South Africa. Electronic address: Jo.wilmshurst@uct.ac.za. 3. Division of Human Genetics and Department of Medicine, University of Cape Town South Africa, South Africa. Electronic address: n.verkijk@uct.ac.za. 4. Aparito Health, United Kingdom. Electronic address: elin@aparito.com. 5. Division of Human Genetics and Department of Medicine, University of Cape Town South Africa, South Africa. Electronic address: karen.fieggen@uct.ac.za.
Abstract
PURPOSE: Successful implementation of innovative Precision Medicine initiatives in the management of children with complex epilepsy is largely dependent on the caregivers' engagement with the technology as well as its accessibility and acceptability. We investigated the feasibility of implementing these initiatives in the South African setting by gathering information on the caregivers' experiences, perspectives, and expectations for Precision Management of Epilepsy (PME) initiatives. METHODS: We purposively recruited 12 participants from a cohort of 40 caregivers of children with complex epilepsy recruited for a PME study attending Red Cross War Memorial Children's Hospital (RCWMCH) in Cape Town, South Africa. Face-to-face semi-structured interviews were conducted using a pragmatic qualitative approach and themes were extracted using a thematic framework approach. RESULTS: All participants had ideas about the cause of epilepsy, but many did not think that epilepsy is a medical condition. There were several difficulties in adhering to medical treatment which was sometimes combined with traditional remedies and practices. Understanding of Precision Medicine in the context of research was limited and although participants were unclear about benefits, most were optimistic about the future. mHealth devices introduced new feelings and challenges for many participants. The four themes which emerged were: (1) Cause of epilepsy: uncertainty and conflicting views; (2) Need for healing; (3) PME mHealth devices; and (4) Feasibility of implementation of PME initiatives. CONCLUSION: For Precision Medicine to be widely accepted and beneficial, how people understand the cause of epilepsy, difficulties in adherence to treatment, and personal experiences need to be addressed.
PURPOSE: Successful implementation of innovative Precision Medicine initiatives in the management of children with complex epilepsy is largely dependent on the caregivers' engagement with the technology as well as its accessibility and acceptability. We investigated the feasibility of implementing these initiatives in the South African setting by gathering information on the caregivers' experiences, perspectives, and expectations for Precision Management of Epilepsy (PME) initiatives. METHODS: We purposively recruited 12 participants from a cohort of 40 caregivers of children with complex epilepsy recruited for a PME study attending Red Cross War Memorial Children's Hospital (RCWMCH) in Cape Town, South Africa. Face-to-face semi-structured interviews were conducted using a pragmatic qualitative approach and themes were extracted using a thematic framework approach. RESULTS: All participants had ideas about the cause of epilepsy, but many did not think that epilepsy is a medical condition. There were several difficulties in adhering to medical treatment which was sometimes combined with traditional remedies and practices. Understanding of Precision Medicine in the context of research was limited and although participants were unclear about benefits, most were optimistic about the future. mHealth devices introduced new feelings and challenges for many participants. The four themes which emerged were: (1) Cause of epilepsy: uncertainty and conflicting views; (2) Need for healing; (3) PME mHealth devices; and (4) Feasibility of implementation of PME initiatives. CONCLUSION: For Precision Medicine to be widely accepted and beneficial, how people understand the cause of epilepsy, difficulties in adherence to treatment, and personal experiences need to be addressed.
Authors: Elin Haf Davies; Karen Fieggen; Jo Wilmshurst; Obuchinezia Anyanwu; Richard Joseph Burman; Sandra Komarzynski Journal: Epilepsia Open Date: 2021-09-02