Childhood Epilepsy: A Qualitative Study of Children's Care Experiences
Research type
Research Study
Full title
Childhood Epilepsy: A Qualitative Study of Children’s Everyday Experiences and Involvement in their Care
IRAS ID
155960
Contact name
Rebecca E Black
Contact email
Research summary
Epilepsy is a complex condition with a variety of implications for life beyond the physical effects associated with epileptic seizures, including intricate and multidimensional care arrangements. Epilepsy can have an impact on all aspects of a child’s life. The experience of children with epilepsy therefore needs to be understood in terms of the conditions influence on their daily life, their involvement, and understanding of the care associated with the condition, and their support needs.
There is growing international recognition of the importance of listening to and consulting with children regarding their lives, especially concerning their healthcare (e.g. UN Convention on the Rights of the Child and the National Services Framework (2004)). Thus obtaining children’s own perspectives is paramount in fully understanding and improving their experiences of and care surrounding epilepsy.
This qualitative study will therefore:(1) explore the everyday accounts of 25 children (aged between 7 and 11 years) with active epilepsy and (2) examine their involvement in the management of their condition in both formal and informal healthcare settings.
The study will use interviews and additional activities with 25 children, an interview with their parent(s) or primary caregiver(s) and an observation of the child’s scheduled consultant appointment at the hospital. The interviews will focus on the child’s experiences of epilepsy and their involvement and participation in their own care. The observations will form parts of the interview discussions. The child will also complete 4 home-based tasks in between the two interviews.
Participants will be initially approached to join the study by the child’s epilepsy consultant at the Royal Hospital for Sick Children (Edinburgh). Those participants’ who opt-in will then be contacted by the lead researcher.
There has been a growing international recognition of the importance of listening to and consulting with children regarding their lives, especially concerning their healthcare (e.g. UN Convention on the Rights of the Child and the National Services Framework (2004)). However, children’s experiences of living with epilepsy and their views on involvement in their own care have rarely been obtained directly. Rather, parents are asked to report on their child’s health and well-being as a proxy reporter. The practice of consulting with parents’ offers only a limited insight into children’s experiences and understanding of epilepsy and associated care. Obtaining children’s own perspectives is paramount in fully understanding and improving their experiences of and care surrounding epilepsy.
Utilising interviews and additional activities with 25 children, interviews with their parent(s) or primary caregiver(s) and an observation of the child’s scheduled consultant appointment at the hospital, this qualitative study will: (1) explore the everyday accounts of children with active epilepsy and (2) examine children’s involvement in the management of their condition in both formal and informal healthcare settings. It is anticipated that such insight will provide the basis for better support interventions for children, their parents’, and medical professionals.
REC name
South East Scotland REC 01
REC reference
14/SS/0090
Date of REC Opinion
19 Jun 2014
REC opinion
Further Information Favourable Opinion