1. The Experience of Parenting a Child with Epilepsy and NES
Research type
Research Study
Full title
The Experience of Parenting a Child with Epilepsy and Non-Epileptic Seizures
IRAS ID
272589
Contact name
Chris Graham
Contact email
Sponsor organisation
Queen's University Belfast
Duration of Study in the UK
1 years, 7 months, 31 days
Research summary
As parents/caregivers play an important role in children’s interventions, it is important that clinicians understand their experiences so interventions can be tailored for optimal outcomes (Kozlowska, 2016).This qualitative study aims to develop an understanding of the experiences of parenting children who have epilepsy diagnoses and are presenting to services with non-epileptic seizures (NES). A sample of ten to fifteen parents/caregivers will be recruited from a of pool parents/caregivers with children, aged eleven to seventeen years, who have been referred to a paediatric service regarding NES. The young person can have received their diagnosis at any point in childhood. However, parents/caregivers of younger children will not be included as a different parenting experience is likely, due to parenting a developmentally younger child. Participants must live in the same household as the young person. The parents/caregivers will complete a semi-structured interview, which has been designed to develop an understanding of their experiences of parenting a child with a physical health condition alongside NES. Participants should allow up to three hours hours to ensure that sufficient time is available for the researcher to provide an explanation of the research, gain informed consent, complete the interview and debrief. Interviews will be conducted in Health Service Buildings within a reasonable distance of participant homes. Interviews will be analysed via thematic analysis (Braun & Clarke, 2006), which will involve the systematic identification and analysis of the themes apparent in the data. This project will contribute to the literature to inform clinicians’ understanding of the experiences of parents/caregivers who have a child with NES and epilepsy. At present there is limited research on the parents of children with NES. There is one qualitative focus group exploration of the experiences of the young people with NES and their family members (McWilliams, Reilly, McFarlane, Booker & Heyman, 2016). No qualitative interview study has solely focused on parent/caregiver experiences; therefore it is hoped this qualitative piece will provide knowledge to inform the direction of future quantitative research in NES.
Summary of Research
The aim of this project was to develop an understanding of parenting a child with epilepsy, who was also presenting to services with non-epileptic seizures (NES). Models of NES in childhood have suggested that parental factors play an important role in the child’s experiences (Kozlowska, 2017; Vincentiss et al., 2006). Yet, parents have indicated that they often feel dismissed, with professionals taking epilepsy more seriously than NES, despite the detrimental impact NES has on their children’s lives (McWilliams et al., 2016). It has been found that parental involvement in interventions is especially important for children with NES, particularly for those who have comorbid epilepsy (Irwin et al., 2000; Kozlowska et al., et al., 2016). Considering these findings, qualitative research aimed to understand the in-depth experiences of parents of children with epilepsy and NES. Such research would support professionals in more optimal interactions with parents of individuals presenting with these conditions. Moreover, this would aid professionals in tailoring assessments and interventions to meet the needs of this group of parents and their children. Therefore, as to date research with this group of parents has been limited, this project aimed to fill the gap in the literature base.Summary of Results
With these aims in mind, a qualitative research project involving semi-structured interviews was designed. Due to the limited literature in the area, questions were informed by previous research with parents of children with other chronic health conditions, including chronic fatigue syndrome and chronic pain. The interview schedule was piloted with two charities – FND Hope and FND Matters NI. It was decided that following interview transcription, a thematic analysis would be conducted in accordance with the procedure outlined by Braun and Clark (2006). This analytic technique was chosen due to the non-homogenous sample. For a trustworthy and rigorous thematic analysis, a higher number of participants are required than for other qualitative analytic techniques, therefore, this project aimed to recruit 10-15 parents with children aged between 11 and 18 years old. Prior to commencing recruitment an amendment was made so that interviews could be conducted virtually or over the telephone due to the COVID-19 pandemic.
Recruitment initially was facilitated by a paediatric health psychology service in one health trust in Northern Ireland. The first participant was recruited participated on 25th of August 2020. As only three participants were recruited, an amendment was made to include paediatric health psychology services across all the health trusts in Northern Ireland and a regional neurology service. Following this amendment and the inclusion of three additional collaborators within the health trusts, only one further parent participated. This final participant took part on 12th of January 2021. As the pool of potential participants was initially small, this was exhausted due to several of the seventeen individuals identified in Northern Ireland declining to participate. Therefore, the decision was made to close this project on 22nd of March 2021.REC name
HSC REC A
REC reference
20/NI/0010
Date of REC Opinion
3 Feb 2020
REC opinion
Further Information Favourable Opinion