Participation in expert-led interactive group discussions with other people with epilepsy may encourage self-acceptance and changes in self-management in patients with poorly controlled epilepsy, according to findings from a small qualitative study published in Epilepsia.1
Due to its chronic nature, many people with epilepsy experience social isolation due to perceived stigmas.2,3 This undermining of self-confidence can also adversely affect a person’s management of their epilepsy, which requires significant patient-initiated effort to control their lifestyle.4-6
It is not clear how educational efforts affect self-management, so investigators led by Professor Leone Ridsdale, MD, PhD, FRCPC, FRCGP, FRCP, of King’s College London, United Kingdom, created an education course to evaluate the perceived benefits and drawbacks experienced by participants with poorly controlled epilepsy.
Overall, 20 participants (mean age = 44; 10 men) completed an interview following their participation in the “Self-Management education for adults with poorly controlled epILEpsy (SMILE)” course. The participants had been diagnosed with epilepsy a median of 20 years before taking the course and 15 of the participants had ≥10 seizures in the previous year.
Of the 20 participants, 13 expressed relief about their feelings of isolation while they were in the presence of other individuals with epilepsy, as well as learning about the frequency of epilepsy and the many people affected by it. The same number of participants also appreciated the design of the course, which allowed for open discussion, question and answer sessions, and the sharing of their stories. For several participants, the “hands on” style allowed them to feel comfortable sharing their negative feelings about their epilepsy and ultimately changed the way they viewed their disease.
While discussing their disease with others helped build up their confidence, participants also described the gratifying experience of sharing their own knowledge being helpful to others in the group.
During the course, the facilitators asked participants to evaluate how their views and experiences changed during the course – a process that participants deemed helpful in making them more aware of the plight of others and changes in how they personally felt about their disease.
Perhaps the most significant impact of the course was its affect on disease management. For instance, 12 participants said that after the course they managed their disease differently; 9 participants said they were now better at recognizing triggers and warning signs; 4 reduced their alcohol intake; and 2 learned safer bathing protocols. In addition, 5 participants reported improved medication adherence and recording of their seizures.
Sharing their story with the group allowed 8 participants to talk about their epilepsy more easily with others outside the group. Nine participants also reported reading the workbook provided and sharing pages from it with family and friends, as well as taking a more open and active role in their disease management with their neurologist. Overall, 19 of the 20 participants interviewed said they would recommend the course to other individuals with epilepsy, especially patients who are newly diagnosed or young in age.
The investigators concluded that typical one-on-one interactions with a physician for disease management do not help patients cope with social issues related to their disease. “From the point of view of [people with epilepsy] with persistent seizures, participating in expert-facilitated interactive groups provided social support and the opportunity to express negative emotions. This reduced their sense of isolation and improved their confidence to talk about their condition,” the investigators wrote.
The researchers suggested that future courses might be developed specifically for newly diagnosed patients, or with a focus on preventing isolation and building confidence.
Disclosure: The course manual was printed with monetary support from Sanofi UK; however it did not influence content.
- Ridsdale L, Philpott SJ, Krooupa AM, Morgan M. People with epilepsy obtain added value from education in groups: results of a qualitative study. Eur J Neurol. 2017;0:1-8. doi:10.1111/ene.13253
- Baker GA. The psychosocial burden of epilepsy. Epilepsia. 2002;43(Suppl 6):26-30.
- Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol. 2005;4:171-178.
- Taylor S, Pinnock H, Epiphanou E, et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic review of self-management support for long-term conditions. Health Serv Deliv Res. 2014;2:53.
- DiIorio C, Osborne Shafer P, Letz R, et al. The association of stigma with self-management and perceptions of health care among adults with epilepsy. Epilepsy Behav. 2003;4:259-267.
- Livingston JD, Boyd JE. Correlates and consequences of internalized stigma for people living with mental illness: a systematic review and meta-analysis. Soc Sci Med. 2010;71: 2150-2161.