Abstract

Background and purpose
Children and young people (CYP) with epilepsy see healthcare professionals (HCPs) for management of their seizures but may require information, advice and support with a range of broader topics. The purpose of the survey was to identify from HCPs, which topics CYP with epilepsy and their parents/carers ask about other than seizure management, and how adequately HCPs feel able to support them with these topics.

Method
A cross-sectional online survey was used to collect data. Adverts which included a link to the survey was shared via social media channels, professional networks and United Kingdom (UK)-based epilepsy networks. Eighty-eight HCPs in the UK (who worked with CYP with epilepsy and their parents/carers) completed the survey. Quantitative data are presented descriptively. Qualitative data (free-text responses) were reflexively thematically analysed.

Results
CYP with epilepsy and their parents/carers were reported to ask HCPs for information, advice and support about a range of topics, most commonly, cognition and mental health. CYP were reported as also frequently asking about aspects of their social life while parents/carers commonly asked about sleep. HCPs varied in how able they felt to adequately support families about these topics, as well as in their views about which resources could be most useful. Having insufficient time and a lack of suitable services and resources to refer to, or draw upon, were key barriers to HCPs being able to support CYP and their families.

Discussion
Findings highlight the broad array of topics CYP with epilepsy and their families are reported as seeking support for. HCPs identified gaps in services and their abilities to meet those needs. There appeared to be a mismatch between the support that families were seeking and the ability of HCPs to meet these needs. Findings have implications for how HCPs could best be supported to deal with topics raised by CYP and families in clinic, highlighting the potential usefulness of informational resources on key topics for HCPs, parents/carers and CYP.
Original languageEnglish
Article number109543
Pages (from-to)1-11
JournalEpilepsy and Behavior
Volume149
Early online date25 Nov 2023
DOIs
Publication statusPublished - 31 Dec 2023

Keywords

  • epilepsy
  • healthcare professionals
  • help
  • paediatric
  • child
  • young person
  • consultation
  • parents
  • carers
  • Paediatric
  • Help
  • Epilepsy
  • Healthcare professionals
  • Child/young person
  • Consultation
  • Humans
  • Caregivers/psychology
  • Child
  • Seizures
  • Parents/psychology
  • Cross-Sectional Studies
  • Epilepsy/diagnosis
  • Delivery of Health Care
  • Adolescent
  • Referral and Consultation

Research Institutes

  • Health Research Institute

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