The Experience and Management of Childhood Epilepsy within the Family
Author: Webster, Michelle L, Michelle.Webster@rhul.ac.uk
Department: School of Law
University: Royal Holloway, University of London, United Kingdom
Supervisor: Professor Jonathan Gabe
Year of completion: 2016
Language of dissertation: English
, Chronic Illness
Areas of Research:
, Family Research
Epilepsy is the most common chronic neurological condition in the UK; however, there is little research detailing children’s experiences of living with epilepsy. More generally, only a small amount of research has explored siblings’ experiences of having a brother or sister with a chronic condition. Additionally, despite increasing use of the ketogenic diet (a treatment for drug‐resistant childhood epilepsy), it has not previously been researched from a sociological perspective.
The findings presented within this thesis are based on data collected from 24 families that had a child with epilepsy aged 3‐13 years, who were being treated with either antiepileptic drugs or a combination of drug and dietary treatment. Data collection comprised 14 group interviews, 23 in‐depth interviews with parents and autodriven photo-elicitation interviews with 10 children with epilepsy and 10 siblings. The data were collected and analysed using a constructivist grounded theory approach.
The findings are framed by the concepts of uncertainty, risk and family practices. Indeed, experiences of uncertainty were common among family members and they responded to uncertainty by living in the present, reducing uncertainty, hoping and waiting. Children and parents viewed medications differently, and the meanings attached to foodstuffs were often altered due to implementing dietary treatment. Parents prioritised minimising what they perceived to be physical risks to the child, whereas the children were most concerned about reducing the risk of being stigmatised. Additionally, changes to family practices affected family relationships and it was found that siblings contributed to care work within the family by taking on three caring roles – the alert assistant, substitute parent and parenting assistant roles. Overall, the findings presented within this thesis contribute to the sociology of health and illness and the sociology of childhood by providing a detailed insight into the experience of daily life in families with a child with epilepsy.