Epilepsy360° – Edition 40: Epilepsy and Peer Support in Young People

Living with chronic illness

The World Health Organisation has estimated that up to 15% of adolescents worldwide may have a chronic illness, and reported that for these young people, the related treatment regimens and disabilities can impact the socialisation process (1).

Epilepsy is a chronic illness that can affect many aspects of a person’s life, from the social and emotional impact, memory and learning issues, to the effects on driving, and getting a job. All these ripple effects can have a considerable impact on overall health, well-being, and quality of life.

Many young people with a chronic illness have long school absences, miss out on social activities, or just don’t feel comfortable talking about their illness to friends for fear of ‘being different’ (2). Many people with epilepsy feel like they are alone with their condition and can’t talk about it in fear of being judged or discriminated against. It has been found that connecting with others living with epilepsy can help reduce the negative impacts of social isolation and stigma associated with living with epilepsy (3).

Being young can be lonely

In the UK, a recent survey of over 55,000 people of all ages, called the BBC Loneliness Experiment, surprisingly found levels of loneliness were highest among 16–24-year-olds, with 40% of them saying they often or very often feel lonely (4). This figure is no doubt higher in young people with epilepsy, but what’s worrying about this is that there are medical and psychological impacts of loneliness (5).

Loneliness does not necessarily mean being alone. It’s the feeling of being alone even in the presence of others and is a perceived experience. There’s a sense of detachment, alienation, and isolation.

Someone may be lonely because they have lost someone to whom they have a strong attachment because of a death or breakup, loss of a job, or leaving a community, such as a high school, college, or job.

Another cause is the feeling of being excluded from others, such as peers, family, or a community. This carries with it feelings of low self-esteem, not feeling valued, or a sense of not feeling accepted.

Teens and young adults may be more vulnerable because they are in the process of forming a sense of identity and seeking who they are and where they belong in the world. This is usually a stressful and confusing period in life, often filled with drama and loss or changes in relationships (5).

The importance of support

Epilepsy is an “invisible” condition which is still linked with stigma. Because of this, people are less likely to discuss or disclose their epilepsy, quite often leading to social isolation. Peer support groups can enhance social support, have been linked with improved quality of life and decreased perceived stigma.

Studies have found that psychosocial factors (such as social support, loneliness, marriage status, social disruption, grief, work environment, social status, and social integration), have the greatest impact on quality of life (6). People living with epilepsy are more likely to feel more isolated, less likely to be employed, and have a lower perceived quality of life, so peer support can play an important role in counteracting the negative impacts of social isolation and stigma associated with living with epilepsy (3).

Although epilepsy severity and seizure control are important predictors of quality of life, some people with epilepsy continue with daily life quite well despite uncontrolled seizures. It has been suggested previously that the people most burdened by epilepsy are not those with more seizures, but rather those who lack social support. Social support is thought to buffer the negative impact of stressful events, ongoing life pressures, and chronic health conditions (7).

What is peer support?

Peer support is a unique but often under-recognised form of social support, defined as the ‘giving and receiving’ of support between people who share the same or similar experiences of illness (3). For people with epilepsy, it is based on a shared experience of epilepsy and seizures and can potentially offering a sense of connectedness and purpose, and knowledge to manage the impact of living with epilepsy (3). Peer support can be informal or more structured, online or face-to-face.

It is important to note that peer support should complement, but not replace any psychological services or professional counselling (8).

Why is it important?

People benefit from connecting with peers in similar circumstances. It is a form of social support and sharing of information and means of coping, and possible strategies for common problems faced by people with epilepsy. Peer support can help normalise how someone is feeling and improve their outlook.

These trusting relationships can lead to a better understanding of and enhanced self-management of their epilepsy, better coping strategies and involvement in treatment decisions. They have also shown to improve self-esteem and quality of life (1,3,9).  

Peer support for people with epilepsy can help with:

• taking more control for managing their epilepsy;
• finding new friends, feeling accepted and not alone;
• speak about their experiences in a safe environment;
• increasing understanding about epilepsy and related issues;
• finding new and effective coping strategies;
• improving social and psychological wellbeing;
• being able to feel good about supporting others; and
• in general, improving overall quality of life.

Meeting others who are effectively managing and coping with their epilepsy, confirms there are people who have overcome difficulties and are living proof of living with epilepsy and having a good quality of life. This can offer hope, and a belief in a better future (8, 10).

Epilepsy Action Australia have two online support groups:

Youth Facebook Group for people with epilepsy aged 16-24

This is a great place for young people to connect, share experiences and support each other. There will be weekly topics, competitions, and opportunities to make your own video to share.  We would love you to join us, Connect Here:  Oz Youth Beyond Epilepsy

Epilepsy Action and Friends – for adults affected by epilepsy

This group is designed to bring together an Australian community of people aged 24 and over who have/had epilepsy or know someone with epilepsy. This is a place for you to share your own experiences, meet others with epilepsy and gain practical advice so you feel supported living with epilepsy.

References:

1. Berkanish, P., Pan, S., Viola, A. et al. (2022) Technology-Based Peer Support Interventions for Adolescents with Chronic Illness: A Systematic Review. J Clin Psychol Med Settings 29, 911–942. https://doi.org/10.1007/s10880-022-09853-0
2. Sydney Children’s Hospital Network. (2019) Peer-support for young people living with chronic illness. Accessed 21 Nov 2022. https://www.schn.health.nsw.gov.au/news/articles/2019/02/peer-support-for-young-people-living-with-chronic-illness
3. Evett, D., Hutchinson, K., Bierbaum, M., Perikic, N., Proctor, C., Rapport, F., & Shih, P. (2021). Peer support and social network groups among people living with epilepsy: A scoping review. Epilepsy & Behavior, 124, 108381. https://www.sciencedirect.com/science/article/abs/pii/S1525505021006429
4. BBC Future. (2018) The surprising truth about loneliness. 1^st October 2018. Accessed 14 Nov 2022 https://www.bbc.com/future/article/20180928-the-surprising-truth-about-loneliness
5. Psychology Today (2019) Why Are Teens So Lonely, and What Can They Do About It? 26 July 2019. Accessed 14 Nov 2022. https://www.psychologytoday.com/au/blog/inside-out-outside-in/201907/why-are-teens-so-lonely-and-what-can-they-do-about-it
6. Räty, L. K., Söderfeldt, B. A., & Larsson, B. M. W. (2007). Daily life in epilepsy: patients’ experiences described by emotions. Epilepsy & Behavior, 10(3), 389-396. https://www.sciencedirect.com/science/article/abs/pii/S1525505007000315
7. Charyton, C., Elliott, J. O., Lu, B., & Moore, J. L. (2009). The impact of social support on health related quality of life in persons with epilepsy. Epilepsy & Behavior, 16(4), 640-645. https://www.sciencedirect.com/science/article/abs/pii/S1525505009005113
8. NSW Government. Agency for Clinical Innovation. Consumer enablement guide. Accessed 15 Nov 2022 https://aci.health.nsw.gov.au/projects/consumer-enablement/how-to-support-enablement/peer-support
9. My-Peer Toolkit. How do peer-based programs work? Accessed 15 Nov 2022. http://mypeer.org.au/planning/what-are-peer-based-programs/how-do-peer-based-programs-work-2/
10. Witnish, Brittany. (2017) Young care leavers: The need for peer support. Young Thinker in Residence | Youth Affairs Council Victoria. pp 12-14. Accessed 22 Nov 2022 https://www.yacvic.org.au/assets/Uploads/Young-Care-Leavers-The-need-for-peer-support-Brittany-Witnish-YACVic-YTiR-Nov-2018.pdf
11. Elafros, M. A., Mulenga, J., Mbewe, E., Haworth, A., Chomba, E., Atadzhanov, M., & Birbeck, G. L. (2013). Peer support groups as an intervention to decrease epilepsy-associated stigma. Epilepsy & behavior : E&B, 27(1), 188–192. https://doi.org/10.1016/j.yebeh.2013.01.005