Abstract
The medical education curriculum in the UK includes a component on understanding and appreciating the psychosocial aspects of illness and care. Yet, children’s own experiences of illness and care are often overlooked. This article explores these neglected experiences and insights through an examination of paediatric epilepsy. The psychosocial implications of being diagnosed and living with epilepsy for children and their families are wide-ranging, affecting physical and emotional wellbeing and involvement in everyday activities, as well as being burdensome to manage and treat. As such, children and their families have to utilize various coping strategies in order to incorporate epilepsy into their lives. Obtaining and appreciating children’s own experiences and perspectives can highlight key challenges for healthcare professionals working with these patients and their families, including recognizing children’s autonomy, effective communication with them, and acknowledging the wider context of children’s lives.
Highlights
Illness and care do not occur in isolation – both are influenced by a range of social and psychological factors
Children’s own experiences of illness and care are not often represented in the curriculum. This neglect is sadly reflected in wider social science and clinical research.[4]
Coping with illness Given the psychosocial impacts of illness and care, it is important to understand how children and families cope with epilepsy
Summary
Rebecca Black a, c, Jeni Hardenb*, and Richard China,c, d a Muir Maxwell Epilepsy Centre, University of Edinburgh b Usher Institute of Population Health Sciences and Informatics, University of Edinburgh c Child Life and Health, University of Edinburgh dRoyal Hospital for Sick Children, Edinburgh, UK
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