Children’s experiences of and involvement in the treatment and management of their epilepsy: a qualitative study
Item statusRestricted Access
Embargo end date06/07/2020
Black, Rebecca Elizabeth Parry
Epilepsy is one of the most frequently diagnosed neurological disorders in childhood (Roberts and Whiting-MacKinnon, 2012). A diagnosis of childhood epilepsy holds a variety of implications for the child and their parents beyond seizures (Ronen et al, 2010), including intricate and multidimensional treatment and management protocols (Kerr et al, 2011). However, despite the increasing recognition of the importance of listening to and consulting with children regarding their healthcare (e.g. Children and Young People (Scotland) 2014), children’s accounts of their epilepsy and involvement in their treatment and management of the condition remain under examined (Harden et al, 2016). This thesis is based on research and data collected with 23 children (aged 7-14 years) with epilepsy and 31 of their parents (54 participants in total). The research examined the everyday experiences of children with epilepsy and their involvement in the management and treatment of their condition at home and in a clinical setting. Children with a diagnosis of active epilepsy and one or both of their parents were interviewed separately on two occasions. Between the first and second interviews, an observation of a routine clinical appointment was conducted which guided the second interview and generated a more in-depth discussion. Additional research tools were used in both child interviews to further facilitate discussions. The data were analysed using a thematic approach. The data indicate that children’s understandings and meanings of epilepsy were drawn directly from their own experiences of the condition and by the information provided by their parents. Both children and parents considered the latter as gatekeepers of epilepsy knowledge. Parents detailed their control of how and what children understood by their condition, and ultimately how it became incorporated into part of their lives. The meanings of epilepsy crafted by children were influential in their experience of its treatment and management. Children’s involvement (at home and in the clinic) was widely reported as being valuable to children, parents, and healthcare professionals. There was, though, variability in how much involvement children sought with their care, illustrated through their various enactments of agency. Connected to this, parents’ and healthcare professionals’ recognition and fostering (implicit and explicit) of children’s agentic contributions and potential also varied across the sample and according to the circumstance shaping children’s involvement in their care. Certain situations were illustrated as influential in children’s desires for involvement and their abilities to demonstrate agentic capabilities. Additionally, the significant contribution parents have in supporting and promoting children’s agentic capacity has been shown. Through exploring the data, I have illustrated children’s agency and competence in their involvement in epilepsy care. The thesis findings are contextualised through discussions of the sociology of childhood health and illness and provide further thought on the concepts of care and agency from a child’s perspective. Additionally, the findings offer practical insights for healthcare professionals working with children with epilepsy. In sum, through scrutinising children’s own accounts this research has illustrated how children with epilepsy enact agency through their involvement or resistance in epilepsy care, and how parents and healthcare professionals provide a mediating influence on this. As such it furthers sociological and clinical discussions on, and highlights, children’s contributions to their care in the context of childhood epilepsy.