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The psychological impact of epilepsy on caregivers

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This blog post was written as part of the QMUL DFTB PEM MSc.

Is there a problem?

We often face children having seizures. Epilepsy is one of the most common, long-term conditions in children and young people. 1 in 240 0-16yrs olds in the UK have epilepsy, and it is a major causes for admissions to hospital. Epilepsy can present alone, or alongside other neurological conditions. The term epilepsy covers a range of seizure types, requiring treatments that vary between individuals.

Are we missing something?

When a child presents with seizures, our focus is on delivering lifesaving emergency treatment. When the child is our priority, we may forget the impact of their condition on the carers. How often do we make time for caregivers to express their concerns about their wellbeing? I have been guilty of this, and often think ‘they are such an amazing carer and really on top of things’. I have been assuming this to be true without ever asking.

It’s not just the patient

Parents and carers may be looking after a child with additional complex health needs. They may have other children or family members to care for. Have you ever stopped to think about the strain this may put them under? For the children with complex needs that I care for I often wonder this. But what good is a thought if I do nothing about it?

We all understand the time pressures in the emergency department, but how long does it take to ask a caregiver about their concerns and their wellbeing? Starting that conversation in the ED can have significant positive impacts on the caregiver’s wellbeing and the overall care of the child.

His name is Bobby – a 6-year-old boy child with epilepsy and a severe neurological disability. Bobby presents regularly with increasing seizures when unwell. His caregiver reports multiple short seizures at home, causing distress and lack of sleep.

They have not had time to call their specialist epilepsy nurse and appear very worried. The seizures have stopped prior to arrival and do not require additional medications.

He needs admission to the ward for treatment of a chest infection. You ask his carer: ‘How are you? How is everything at home?’. They start to cry, and state no one has asked them in such a long time. They begin to explain the impact Bobby’s epilepsy is having on their health and wellbeing.

So, why does epilepsy have such an impact on the psychological well-being of caregivers?

Lack of information

Epilepsy can present many challenges to daily life. For caregivers, accessing information and resources can be difficult. There is a strong correlation between caring for a child with epilepsy and neurological disability and depression, anxiety and PTSD. 50% of those caring for a child with epilepsy are at risk of psychological ill-health.

Many caregivers want information on:

  • Different seizure types
  • Medication
  • Managing risks associated with seizures
  • Death related to epilepsy

However, caregivers feel at risk of stigmatisation from healthcare professionals when asking for information. They worry that they may be seen as ‘difficult’ or ‘challenging’ when questioning their child’s care. As a result, it can take longer to feel confident enough to ask questions and gain a sense of control over their child’s health.

School

Children with epilepsy and neurological disabilities often suffer from interrupted school life. Only 32% of children with epilepsy have personalized school care plans.

Few people in mainstream schools understand epilepsy compared to additional needs schools and parents want schools to improve their knowledge on both seizure management and how the condition can impact their child’s developmental and emotional health.

A 2021 study found caregivers would like support from healthcare professionals providing information to schools.

Quality of life and mortality

Children with epilepsy have a lower health-related quality of life compared to other long term health conditions. They also have an increased risk of ill health due to seizure-related injuries, side effects of medication and co-morbidities.

Risks associated with seizures are common and greater for those with associated co-morbidities.

Risks

  • Epilepsy related injury (soft tissue injury, fractures, lacerations, burns, head injury)
  • Epilepsy related death (10x greater risk of drowning, Sudden Unexplained Death in EPilepsy – SUDEP))

SUDEP is the highest cause of epilepsy-related death worldwide, It is often unwitnessed and may occur when the child is asleep. There is a strong correlation between increased risk of SUDEP and epileptic children who sleep prone.

International data found that 90% of caregivers wanted more information on epilepsy-related risks – including injuries and death but only 31% were provided with it by health care professionals.

What can we do to help?

Ask – If we do not ask, we cannot help. You may be thinking – isn’t this a conversation their specialist nurse or neurologist should be having? They may only see their specialist team once every 6 months. And often those consultations are filled with other issues.

Start a conversation – We may not address every concern, but we can help caregivers to reach out to their specialist team, and signpost them to reliable sources of information.

Epilepsy specialist nurse – We should encourage caregivers to email/call their specialist nurse for advice and support. Paediatric emergency clinicians can also email the child’s specialist team to highlight their attendance in the department. Multidisciplinary communication is key.

Signposting – There are lots of fantastic resources for caregivers that provide up to date information on epilepsy. These resources also provide support networks for caregivers to connect:

  • Epilepsy Action
  • Young Epilepsy
  • Child Brain Injury Trust (emotional and practical support for those impacted with epilepsy associated with an acquired brain injury)
  • Epilepsy Society (Full contact information at the end)

Finally… a take-home message

I asked an epilepsy specialist nurse what advice she would give to clinicians when speaking with caregivers.

“Have respect for the caregivers. They know their child best and become experts of their epilepsy. Take the time to listen to their concerns. If they are telling you something is wrong– it probably is!. Always speak to the child, even if they cannot speak back, they still understand. We must be advocates for children with neurological disabilities and epilepsy”.

Selected Resources

Epilepsy Action:

Young Epilepsy:

Child Brain Injury Trust:

Epilepsy Society:

References

Bertinat A, Kerr M, Cramer J, Braga P. Living safely with epilepsy: a key learning review. Epileptic Disorders. 2020; 22(4): 364-380. DOI: https://doi.org/10.1684/epd.2020.1190

Epilepsy in Action. Facts and statistics. 2022. Available from: https://www.epilepsy.org.uk/info/children-young-adults/children

Henning O, Nakked K, Lossius M. People with epilepsy and their relatives want more information about risks of injuries and premature death. Epilepsy and Behaviour. 2018; 82; 6-10. DOI: https://doi.org/10.1016/j.yebeh.2018.02.023

Johnson E, Atkinson P, Muggeridgea A, Cross Hm, Reilly C. Epilepsy in schools: Views on educational and therapeutic provision, understanding of epilepsy and seizure management. Epilepsy & Behavior. 2021;122: 1-11. DOI: https://doi.org/10.1016/j.yebeh.2021.108179

Jokobsen A, Moller R, Nikanorovaa M, Elklitb A. The impact of severe pediatric epilepsy on experienced stress and psychopathology in parents. Epilepsy and Behaviour. 2020; 113:1-6. DOI: https://doi.org/10.1016/j.yebeh.2020.107538

Kossarova L, Cheung R, Hargreaves D, Keeble E. Admissions of inequality: emergency hospital use for children and young people. 2017. Available from: https://www.nuffieldtrust.org.uk/files/2017-12/nt-admissions-of-inequality-web.pdf

Mesraoua B, Deleu D, Hassan A, Gayane M, Lubna A, Ali M, Tomson T, Khalil B, Cross J, & Asadi-Pooya A. Dramatic outcomes in epilepsy: depression, suicide, injuries, and mortality. Current Medical Research and Opinion. 2020; 26(9):1473-1480. DOI: https://doi.org/10.1080/03007995.2020.1776234

Nevin S, Wakefield C, Schilstra C, McGill B, Bye A, Palmer E. The information needs of parents of children with early-onset epilepsy: A systematic review. Epilepsy and Behaviour. 2021; 112: 1-9. DOI: https://doi.org/10.1016/j.yebeh.2020.107382

Pokharel R, Poudel P, Lama S, Thapa K, Sigdel R, Shrestha E. Burden and Its Predictors among Caregivers of Patients with Epilepsy. Journal of Epilepsy Research. 2020;10(1):24-30. DOI: https://doi.org/10.14581/jer.20005

Rani A, Thomas P. Stress and perceived stigma among parents of children with epilepsy. Neurological Sciences. 2019; 40:1363–1370. DOI: https://doi.org/10.1007/s10072-019-03822-6

Royal College of Paediatric and Child Health. Epilepsy12 – national organisational audit and clinical audit – 2021. Available from: https://www.rcpch.ac.uk/topic/neurodisability

Tedrus G, Pereira R, Zoppib M. Epilepsy, stigma, and family. Epilepsy & Behaviour. 2018; 78: 265-268. DOI: https://doi.org/10.1016/j.yebeh.2017.08.007

About the authors

  • Holly is a Paediatric Sister who specialises in Emergency Care and Critical Care Outreach, based in London. She is passionate about nursing education and development, and is a student in the QMUL DFTB MSc. She loves cooking, travelling, dungarees and her dog Maisie. She/her.

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