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Title: An exploration of the experiences and support needs of families of young children with refractory epilepsy
Author: Nelson, Fiona
ISNI:       0000 0004 9359 0475
Awarding Body: University of Liverpool
Current Institution: University of Liverpool
Date of Award: 2020
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This thesis explores the experiences and support needs of parents of young children who have refractory epilepsy and for whom surgery is being considered as a treatment. The introductory chapter presents a contextual overview of paediatric epilepsy, surgery as treatment for refractory epilepsy and the rational for the current investigation. A systematic review of pertinent research is then presented (chapter 1) before an empirical research paper focussing on the experiences and support needs of families with a young child being considered for epilepsy surgery (chapter 2). The format of chapter one and two follow guidelines for publication in the journal Epilepsy & Behavior (Appendix A). This introduction section is formatted according to American Psychological Association (APA) style. Background Literature Epilepsy is a neurological condition that affects 50 million people worldwide (World Health Organisation (WHO), 2019) and is characterised by recurrent seizures. In the UK prevalence of epilepsy is approximately five to 10 cases in 1000 (National Institute for Health and Care Excellence (NICE), 2012) with incidence highest in infants, children and those over 80 years (Neligan, Hauser, & Sander, 2012). The impact of epilepsy on a child and their family is extensive and can include cognitive, behavioural, educational, social and psychosocial difficulties (Aguiar, Guerreiro, McBrian, & Montenegro, 2007; Dunn, Austin, & Huster, 1997; Fastenau, Jianzhao, Dunn, & Austin, 2008; Ott et al., 2003; Reilly et al., 2015; Rodenburg, Wagner, Austin, Kerr, & Dunn, 2011). Two thirds of those with active epilepsy (children and adults) have satisfactory seizure control through anti-epileptic drugs (AEDs) (NICE, 2012). However, this leaves approximately 10-20% of children with epilepsy (CWE) with uncontrolled or 'refractory' seizures (Aneja & Jain, 2014). This is often defined as when seizures have demonstrated resistance to two or more AEDs (Kwan et al., 2010). For these children neurosurgery, with the aim to remove or disconnect the epileptogenic brain tissue, may be considered as a treatment option (Gadgil et al., 2019). In children selected as suitable candidates, epilepsy surgery has been shown to be effective in reducing seizure frequency, slowing developmental regression and improving quality of life (Hemb et al., 2010; Jonas et al., 2004; Van Empelen, Jennekens-Schinkel, Van Rijen, Helders, & Van Nieuwenhuizen, 2005). It is suggested that epilepsy surgery should be considered as early as possible due to the negative impact ongoing seizures have upon brain development (Freitag & Tuxhorn, 2005). This is thought to be particularly advantageous for younger children under five years of age (NHS England, 2018). In 2012, the national Children's Epilepsy Surgery Service (CESS) was developed to increase early uptake and quality of paediatric epilepsy surgery in England (NHS England, 2018). This followed the publication of a review which highlighted that assessment and evaluation for surgery was taking two years or more (Harvey, Cross, Shinnar, & Mathern, 2008). The national Children's Epilepsy Surgery Service is divided into four designated centres (CESSs) in Birmingham, London, Bristol and the North (Liverpool and Manchester) (NHS England, 2018). The process of assessment to establish suitability for epilepsy surgery may include clinical review, additional investigations such as EEG, fMRI, MEG, MRI, 3T MRI, PET, SEEG and VT, as well as assessment by neuropsychology, neuropsychiatry, speech and language therapy, ophthalmology, occupational therapy and physiotherapy. Results inform the decisions made by the multidisciplinary team as to whether surgery is appropriate. If the CESS team decide that the child is a suitable candidate for surgery their family will then have to decide whether or not to proceed. For other families, it is concluded that their child is not a suitable candidate for surgery. They will therefore have completed the assessment process, but surgery is not available to them as a treatment option. Epilepsy surgery in infancy and early childhood is increasingly recommended and the UK CESS has been formed and commissioned to increase uptake, particularly in children under five years of age (NHS England, 2018). However, there has been a lack of literature exploring the experiences of the families of young children with refractory epilepsy whilst being considered for epilepsy surgery and what support might be needed during this time. It is important to understand the possible psychosocial needs of those caring for children and young people with refractory epilepsy to inform future development of UK family centred epilepsy services. However, there is a lack of literature exploring the psychological wellbeing of those living with and caring for a child or young person with refractory epilepsy. This study aims to explore the experiences of families of young children being considered for epilepsy surgery, the support provided and their support needs. Chapter one, therefore, synthesises and evaluates research related to symptoms of stress, anxiety and depression in parents of children and young people (CYP) with refractory epilepsy. This is followed by an exploration of family's experiences and support needs whilst their young child is considered for epilepsy surgery (Chapter 2). Outcomes aims to inform future development of family centred support services and contribute to the body of literature around family experiences of young children's epilepsy surgery.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psy.) Qualification Level: Doctoral