6. Aside from people with epilepsy and clinicians, are there others who should be targeted in an intervention to improve self management of epilepsy? If so, please describe them.
Family Members, Caregivers, and Friends (51)
Over half of the responses included the family, caregivers, and/or friends. Specific family members singled out were parents, spouses, siblings, partners, and significant others. Some regarded family as a broad, self-defined term that may include friends or anyone in the
person’s life who can provide frequent support. The resounding reason to include such people in an intervention had to do with promoting a supportive network that encourages effective self management. As one respondent explained, “they all need to be on the same page.”
Family members can play a critical role in helping a person with epilepsy practice good self management skills. They can set the tone in the household and, in the case of young children with epilepsy, parents can instill the importance of self management in their children from an early age. Family members are affected by the disorder, and therefore may benefit from an intervention that reduces or prevents negative effects.
“It’s very difficult to help the family dynamic survive epilepsy. Spouses can sometimes feel like a parent of a person with intractable epilepsy.”
-Consumer Ombudsman, Inpatient Health Plan; person with epilepsy
Even as several respondents discussed family members as a natural choice of support, many others pointed out the potential for familial dynamics and baggage to interfere with self management efforts.
“I think family members are often very anxious about the way that the person, the way that the family member with epilepsy is behaving or what they’re doing, they can impose restrictions that aren’t necessary necessarily, they can sort of inhibit what the person’s doing, so I think they need help, to see that a person can self manage…”
-Professor of Medical Sociology
Some respondents stressed concerns about familial over-protectiveness that can hamper self-management efforts. Such concerns were voiced as arguments as to why family members need to be included and as arguments as to why people with epilepsy should have the option to include friends rather than, or in addition to, family members in a program that promotes self management.
“Maybe having a good friend, that someone identifies and can be a good buddy so to speak, and help with medication reminders and other health-enhancing lifestyle behavior reminders, messages, those kind of messages coming from a more neutral friend might actually be more beneficial.”
-Advisor for government agency; has family member with epilepsy
School Personnel (47)
Nearly half of respondents discussed school personnel as a group that should be targeted;
personnel identified included teachers and teacher aides, school health nurses, guidance counselors, social workers, therapists, and administrators. The most common reason for this choice was that school personnel need to be trained to react appropriately to seizures in the school system. Many teachers do not know how to react to a seizure, and children too often end up in the emergency room after the seizure is over and the ER staff can no longer do anything for the child. A few respondents brought up teachers’ reluctance to use Diastat, a rectally applied medication that can stop acute repetitive seizures, despite it being a potentially life-saving measure for the child.
“What I see most lacking, because I work with children, is the need for school nurses and other professionals within the school to have better understanding of epilepsy and its treatment and about how these children, you know, should be handled in terms of their seizures in the school setting.”
- Nurse Practitioner; Children’s Hospital
Another cited reason to include school personnel was so that teachers could recognize, and accommodate, learning impairments and behavioral issues in students that may be linked to epilepsy or side effects of their medication. For children who have very difficult to control syndromes with epilepsy, schools need to develop individual educational plans to increase the child’s ability to learn.
Involving school personnel may add to and improve the information a physician can use to help patients. One respondent discussed the work of a physician who trains the teachers of his patients to recognize their seizures, record them, and report them directly to him so that the physician can better manage the child’s disorder.
Involving school personnel may also provide an opportunity to educate classmates about epilepsy in order to remove some of the stigma and fear of seizures and provide a more accepting and supportive environment for the child.
“That also helps because a person having a seizure, or having epilepsy, is tough enough having the condition, but the social treatment, from the lack of understanding from fellow classmates can be to a very young person, can be just devastating.”
-Executive Director of an Epilepsy Foundation affiliate; parent of child with epilepsy
“It’s not just the teachers, it’s not just the school nurse, it’s hey, you know, you guys are out on the playground with this child, right, and let’s talk about the fact that this isn’t a contagious disease… they have some medicine just like a lot of you do for your, you know, asthma or whatever.”
- Professor; Center for Health Promotion and Prevention Research
School administrators were identified because as policy makers, they have influence on how the above issues are handled in the schools. To provide an example of an inappropriate policy, a respondent spoke of an instance where a child who experienced a seizure was instructed to stay home from school for two weeks.
It should be noted that one respondent was unsure if involving teachers would be an appropriate target, given their very heavy workload, and another adamantly stated that involving teachers would be a waste of time because they deal with too many disorders to focus on just one.
Employment, Employers and the Workplace (20)
A common theme among responses related to employment and the workplace. Several respondents identified employers and prospective employers as desired targets of a self management intervention. Also identified were employment agencies, fellow employees, human resources, and occupational nurses. Many respondents discussed the need for these individuals to better understand the disorder overall and know how to react to seizures, while others discussed the need for employers to know how to facilitate safety and self management.
“If someone falls and breaks, their arm’s in a sling, it’s easy for the human resources folks to see this person needs an accommodation, but people with epilepsy they look completely normal, and I feel like sometimes I get some pushback from employers giving accommodations to folks… I think there’s a need for education of the
employment community about seizures that, you know, even though the person looks fine, there’s a risk.”
-MD; Director of Hospital Epilepsy Center; President of Neurological Clinic
One respondent described the need for employment agencies to learn to counsel people with epilepsy on appropriate jobs to seek that will not put them at risk and to learn how to address the issue of divulging one’s disorder. Disclosing that information can cause conflict; it is important to share so that others know what to do in case of seizures but there can also be a lot of pressure to hide one’s epilepsy in order to avoid discrimination and job loss.
Social Workers (14)
Social workers were identified by several respondents. Most did not explain their choice, perhaps because they were previously discussed in the preceding question about the type of clinician most in need of an intervention.
“Social workers… could use some education on helping to support people in making self management decisions… and it’s not that they have to do the self management, but helping to educate their clients on good self management tools, on resources in their area, and things like that.”
-Executive Director of an Epilepsy Foundation affiliate; person with epilepsy
Less Common Responses (10 and under)
• All professionals who interact with people with epilepsy (10)
• The public (10)
• Law enforcement (8)
• Staff in group homes and institutional care facilities (6)
• First responders (6)
• Mental health professionals (4)
• Epilepsy foundation staff and board members (3)
• Peers (3)
• Policy makers (2)
• Religious or spiritual leaders (2)
• Any agencies (1)
• Day care (1)
• Nursing homes (1)
• Pharmacists (1)
• Senior groups (1)