It Goes Beyond Anxiety: Experiences of Family Members and Caregivers of Epilepsy Care and Support

Abstract

Purpose To investigate the knowledge of epilepsy care and the support given by professionals to assist family members and caregivers in providing good care to People Living with Epilepsy (PLWE). Patients and Methods In this case study, fifteen participants participated. Of these, eleven were parents, and four were siblings. Twelve of the participants were primary caregivers, and three were secondary caregivers. Data were collected via in-person semi-structured interviews and analysed via thematic analysis. Results From the study, two themes emerged: Participant experiences regarding epilepsy practices and knowledge regarding epilepsy. From these two themes, four subthemes emerged: Epileptic seizure practice and treatment, as well as epilepsy knowledge and counselling and support. Conclusion This study revealed that although family members and caregivers are essential in patient care, they need more support and care from health providers. The much-needed care and support would assist in alleviating some pressures on epilepsy patient care and increase care standards and quality of life for families and PLWE.