Improving the Quality of Life in Epilepsy: The Social Factors of Youths Living with Epilepsy
By Massina Micoli
The stigmatizing nature of epilepsy and its associated psychological distress have a significant impact on the quality of life of the individuals affected by it. However, the degree of the felt stigma and its consequences are not equal in every individual with epilepsy. Seizure frequency is considered to be significantly related to felt stigma, but even people with infrequent seizures have high scores on the stigma scale (2).
Reidpath and co-workers have suggested that individuals who are chronically ill have less "social value" than healthy individuals and are thus stigmatized (3). Individuals with a potentially stigmatizing illness assume that they will be devalued and discriminated against. These people adopt coping strategies to address these assumptions, typically secrecy and social withdrawal, which have marked negative consequences for quality of life, and hence reinforce their feeling of being stigmatized (4). Jacoby and colleagues documented rates of felt stigma in individuals beginning to have seizures. Among those just diagnosed with epilepsy, a quarter reported feeling stigmatized, suggesting that they expected they would be treated differently even though they had not yet experienced being epileptic.
This research report demonstrates the impacts of epilepsy, seizure type, seizure frequency, age of onset, country of origin, feelings about life, getting a job, socializing, dating, medication, self-esteem, and anxiety, on quality of life. The overall score of the Quality of Life (QOL) questionnaire determines the extent to which the individual feels stigmatized.
Method
Twenty eight participants took part in the survey. In the group of participants with epilepsy, which we will call the epilepsy group, 5 participants were male and 9 were female. In the control group, 4 were male and 10 were female. The mean ages in the control group and the epilepsy group were 24 years and 20 years, respectively. The participants were randomly selected from Epilepsy Ontario's scholarship contact lists from the past three years. The participants were English speaking and of European and North American cultures.
In the epilepsy group, participants indicated on the questionnaire the types of seizures and seizure frequency they experienced, and the medications and/or treatments they have taken or are presently taking. There were also nine domains under which questions were asked which assessed: discrimination, employment, interpersonal relations/dating, social relations and recreation, self-esteem, anxiety, if employed, emotional, and medication. Participants rated these questions on a scale of 1-5 where 1 corresponded to 'very much so' and 5 corresponded to 'not at all'.
All questions regarding seizures were excluded from the questionnaire given to the control group. The same nine domains that were assessed in the epilepsy group were also assessed in this group. By including the control group the researcher wanted to show that all youths, whether they have epilepsy or not, have concerns about getting a job, dating, and fitting in.
At the end of the survey the participants were given a list of the following topics: energy, emotions, daily activities (work, driving, social), mental activities (thinking, concentrating, memory), medication effects (physical, mental), seizure worry (impact of seizures), and overall quality of life. They were required to number the topics from 1-7, with 1 corresponding to the most important topic and 7 to the least important one.
Higher scores on the QOL questionnaire indicate a lower quality of life rating. This is because the questions are phrased with negative connotations, for example: "Do you worry about getting a job?" If someone obtains a higher score on this question, it indicates an increased worry about getting a job.
Results
The sum of the total participants' scores for quality of life in the epilepsy group was 2506. This is higher than the total score for the control group (2107), which indicates a poorer rating of quality of life in the epilepsy group.
Of the nine domains included in the QOL questionnaire, the factor that most significantly affected quality of life in the epilepsy group was social relations and recreational activity. Conversely, in the control group, self-esteem had the highest score.
In the epilepsy group 50% of the participants experience complex partial seizures and 42.8% experience grand mal seizures. In the control group, 85.7% of the participants are employed. In contrast, only one participant in the epilepsy group is employed while the rest are either students or unemployed. As well, the majority of all participants have either high school or university background. In the epilepsy group, 50% indicated that overall quality of life is the most important of the seven topics listed in the previous section.
In the epilepsy group, 69% of the participants felt stigmatized and discriminated against due to their disorder, and one participant did not answer that question. The most significant scores were for social relations and recreational activities; in the epilepsy group the score was 516 and in the control group the score was 315. Thus, it appears that youths with epilepsy are mainly concerned that social relations and recreational activities are hindered due to their disorder.
Discussion and Conclusion
This research report provides evidence that youths between the ages of 13 and 25 years who have epilepsy experience barriers in certain aspects of their lives such as making friends, getting a job, getting a driver's license, going on dates, self-esteem, medication side effects, and anxiety. Importantly, youths with epilepsy are considered to be at a greater risk for anxiety, depression, and poor self-esteem, than those without epilepsy.
Many youths with epilepsy reported that looking for a job is very hard and not having a driver's license limits job opportunities. They often feel that they are unreliable employees before they even begin work due to their epilepsy and fear getting fired. Many participants reported that another concern for them is the stress of telling people, either potential employers or friends, that they have epilepsy. As well, having seizures in front of other people was a source of anxiety for many participants. One participant outlined the issue of birth control in women with epilepsy and having to coming off of medication if one wants to become pregnant.
There are many recreational and social activities that these youths would like to partake in but as one participant responded, many are "not seizure friendly." However, most youths reported the most disappointing part about having epilepsy is the stigma. One participant stated, "People give off a 'vibe' when I explain I am epileptic, kind of like I just said I have AIDS or something." Another participant said, "Suddenly I appear in a different light to them. I think they feel like they need to watch out for me because something may happen, I also feel people feel unsafe around me."
This report reveals that psychosocial functioning in youths affects quality of life considerably, perhaps even more so than the physical factors. The reasons for the significant psychological/social impact on quality of life may reflect the unfavourable social environments that the youths encounter, which produce high levels of anxiety, depression, and social dissatisfaction.
Future Research
Social stigmatization can cause epileptic patients to have pessimistic attitudes and limit their opportunities with regards to education, employment and socializing (5). It is critical that health care professionals recognize the spectrum of issues facing patients with epilepsy and are familiar with the available resources. The ideal model of care for individuals with epilepsy would involve collaboration among patients, families, primary care physicians, epilepsy specialists, mental health professionals, rehabilitation experts, community resources, and peers.
Sources
1. Shafer, P.O. (2002). 'Improving the Quality of Life in Epilepsy.' The Practical Peer Reviewed Journal for Primary Care Physicians, 1, 111-126.
2. Lee, S.A., Yoo, H.J., & Lee, B. (2005). 'Factors Contributing to the Stigma of Epilepsy.' Seizure, 14, 157-163.
3. Reidpath, D.D., Chan, K.Y., Gifford, S.M., et al. (2005). ''He hath the French Pox': Stigma, social value, and social exclusion.' Sociology of Health & Illness, 2, 121-125.
4. Jacoby, A., Snape, D., & Baker, G.A. (2005). 'Epilepsy and social identity: the stigma of a chronic neurological disorder.' Lancet Neural, 4, 171-178.
5. Mikhailov, V.A., Tabulina, S.D., & Gromov, S.A. (2004). 'Depression as a Factor Affecting the Quality-of-Life Assessment in Patients with Epilepsy.' International Journal of Mental Health, 33, 63-68.
