14. Is there anything else you’d like to recommend about intervention strategies?
CONSIDER: recruitment, setting, format, methods, staffing, theoretical frameworks
No more to say on strategies (20)
Twenty percent of respondents had nothing more to add about intervention strategies addressed in the previous question.
Recruitment (14)
Nearly fifteen percent of respondents cited recruitment as an important issue when thinking about details of an intervention strategy. Recruitment can be a challenge, as evidenced by the many reasons given when respondents were asked about barriers to participation. Connecting people to existing resources, let alone a new program, can prove arduous. Several
respondents advised working with health care providers in the clinical setting.
“I review the clinic schedules in advance the week before and screen who we can recruit, and we have someone in the clinic, we sent out letters to our family, they know they are going to be approached, and our research assistant who approaches the family and explains the study while they are in the clinic visit, which you know, has been much more fruitful, than the other ways we have tried to do it…”
-Pediatric Nurse Practitioner
Other respondents stressed the importance of convincing potential participants of the value of the program and how it can meet their needs. Making sure a program can meet participants’
needs involves careful local research of the target audience and alignment of program focus and philosophy. Other suggestions concerned widespread marketing efforts including print, online, and social networking websites. One respondent argued that in order to improve recruitment, awareness of epilepsy needs to be made as mainstream as possible.
“A multiple approach recruiting, including through the medical community and in a face to face way ought to be used to involve people in self management. Make it more of, less of an orphan, and more of an activity that seems more mainstream.”
-Consumer Ombudsman, Inpatient Health Plan; person with epilepsy
There is no one-size-fits-all approach (12)
A general theme that emerged from several respondents was that no one approach will work for everyone and it is important to know an intervention’s audience and tailor it appropriately.
Differences to consider include age, developmental stage, cognitive ability, cultural differences, regional variances, the spectrum of epilepsies, and individual comfort levels, preferences and needs.
“Making it specific to the people or persons that you’re talking to because, again, adolescents have different needs than, you know, older adults do, and I think you just have to take all that into consideration because interventions only work when the people who are engaged in them can see the benefits out of it.”
-Professor of Nursing
Intervention planners need to recognize these differences and design an intervention that focuses on a specific group with many shared similarities, and participants should be given choices so they can decide what will work best for them.
Fostering Peer Interaction and Support (8)
The importance of interventions that bring people with epilepsy or their caretakers together was emphasized by several respondents. People—in some cases people who are quite isolated—can see that they are not alone; group interactions can normalize feelings and experiences. It is important to allow for community building so that people can share similar problems as well as possible solutions, and receive support from one another.
“They don’t see other people with epilepsy, so building that connection and seeing other people like them and sharing their issues, I think, is critical to have that connectedness to other people.”
- Professor, Health Behavior and Health Education
One respondent recommended that an infrastructure be put into place to support a long-lasting social network. Another talked about the value of connecting individual families with each other so that, for example, a family with experience with the ketogenic diet can share experiences with a family who is considering the diet. The less experienced family benefits from the other’s wisdom, and the family with experience has the opportunity to connect with others and feel good about helping. Another recommendation was to utilize social networking sites such as Facebook (www.facebook.com) to promote connection and mutual support.
One respondent warned of the dangers of peer support if no one with medical expertise is present, because participants can mislead each other with inaccurate information.
Other (5 or less)
• Address depression and anxiety (5)
• Use a theoretical framework (4)
• Offer follow-up or multiple encounters (4)
• Involve family members (4)
• Setting is an important consideration (4)
• Test several strategies and review past research (4)
• Address using many strategies and formats (4)
• Be community based (3)
• Early intervention is important (3)
• Educate the general public (3)
• Include expert medical speakers (3)
• Offer remote participation options (3)
• Address transportation barriers (3)
• Address how it affects people differently (2)
• Back off over time (2)
• Keep it uncomplicated and avoid jargon (3)
• Model after self management interventions for other diseases (2)
• Involve nurses (2)
• Involve school systems (2)
• Address myths (1)
• Allow for flexibility to change formats (1)
• Train staff in crisis management (1)
• Educate neurologists (1)
• Consider small group size (1)
• Focus on desired outcomes (1)
• Give people with epilepsy choices (1)
• Involve the local Epilepsy Foundation affiliate (1)
• Involve the many people who help people with epilepsy (1)
• Involve people with epilepsy in planning the intervention (1)
• Funding is an important issue (1)
• Include access to legal assistance (1)
• Track long-term outcomes and feedback (1)
• Incorporate motivational interviewing (1)
• Incorporate peer education (1)
• Assist people without insurance (1)
• Include as much personal interaction as possible (1)
• Send regular newsletters (1)
• Determining the scope of targeted behaviors is important (1)
• Translation from research to practice is important (1)
• Aim to enrich the lives of people with epilepsy (1)