Social support for self-management behaviors among people with epilepsy:

1
Social support for self-management behaviors
among people with epilepsy A content analysis
of the WebEASE program
Elizabeth Reisinger Walker, M.P.H., M.A.T., Yvan
Bamps, Ph.D., Colleen DiIorio, R.N.,
Ph.D. Funded by the CDC Epilepsy Program in the
National Center for Chronic Disease Prevention
and Health Promotion
Figure 2. Relationship of Support Providers to
PWE in each WebEASE module
Abstract Social support is an important
component in managing chronic conditions such as
epilepsy2,3 however there is a dearth of
research on the nature of support provided to
people with epilepsy (PWE), whom PWE rely on, and
the impact on their self-management behaviors.
The purpose of this study was to examine who PWE
identify as support people and how these
individuals can help them with self-management
behaviors. Data comes from the pilot and
efficacy studies of WebEASE, an internet-based,
theory-driven self-management program for PWE
focusing on increasing medication adherence,
reducing stress, and improving sleep quality.
A content analysis was conducted on participant
responses to open-ended questions in the program
related to social support. Preliminary analysis
indicates that the majority of participants
provided information about their support
providers. The number of support providers
ranged from 0 to 6 (mean of 1.5) parents and
significant others were most commonly listed.
Common themes for ways in which individuals could
help PWE include providing emotional and tangible
support, encouragement, relaxation, and reminders
and aid for taking medicines. A minority of
participants indicated that they do not have
people whom they can ask for help and several
stated that asking for help makes their situation
worse or that they do not want to be a bother.
Although WebEASE prompts participants to think
about support regarding specific behaviors and
does not cover the range of situations in which
support may be provided, this study contributes
to the understanding of social support for
self-management behaviors among PWE.
Results In study and RCT, the number of people
who listed support providers were 101 for the
medication module, 70 for stress, and 58 for
sleep (see Table 2). About the same number of
people listed either one or multiple support
providers. Across the modules, about 10 of
participants indicated that they have no support
providers. Spouses/partners and parents were
most commonly listed as support providers (see
Figure 2). Depending on the module, 15 to 30
of participants did not specify the relationship
of the support person (e.g. stated a name).
Table 2. Number of Support Providers indicated
by PWE in each WebEASE module
Table 3. Numbers and examples of coded responses
to how the Support Provider (SP) can help the
Person with Epilepsy (PWE)
Code Description Medication Module Medication Module Medication Module Stress Module Stress Module Stress Module Sleep Module Sleep Module Sleep Module
Code Description Week 1 (n117) Week 2 (n97) Examples Week 1 (n83) Week 2 (n62) Examples Week 1 (n58) Week 2 (n37) Examples
Reminders SP reminds PWE of medication, stress, or sleep behavior 39 (33.3) 32 (33.0) Constant reminders - they make sure I don't forget. They can help remind me to take my pills, and bring me my medication and a drink if I'm really busy and likely to put it off. 0 0 5 (8.6) 4 (10.8) Remind me not to stay up late
Monitoring SP checks that the PWE has completed medication, stress, or sleep behavior 22 (18.8) 17 (17.5) Asking me at night if I have taken my medicine and double-checking the pill box in the morning to see if I have taken it. Audits my pillbox each night. Reminds me when 7am and 7pm is 10 minutes away. 0 0 0 0
Strategy support SP helps PWE to employ strategies for medication, stress, or sleep behaviors 7 (6.0) 9 (9.3) Carry extra medication with him. She has my Medicines on automatic refill and she refills my pillbox as soon as it is empty. 12 (14.5) 11 (17.7) Remind me to take time-outs and breathe. Exercise with me. 24 (41.4) 9 (24.3) Making sure that the area is a stress free area and quiet Be willing to go to sleep early as well
General support SP provides unspecified support. 18 (15.4) 15 (15.5) She is the rock of our relationship, the glue. They support me and do not judge me because of my epilepsy. 15 (18.1) 12 (19.4) Being there. Be supportive. 10 (17.2) 11 (29.7) Just help me.
Emotional support SP provides caring, encouragement, and understanding. 9 (7.7) 7 (7.2) Support and understanding and genuine concern. D has had seizures for more years than I have. That is a great and understanding help and support system. 20 (24.1) 15 (24.2) Just listen to me when I need to talk about my problems. They will listen to me with I need someone to talk to. 7 (12.1) 6 (16.2) Encourage me without nagging.... Let me talk about the things Im stressed about during the day so I dont worry about them at night...
Instrumental support SP provides tangible aid and/or services (e.g. help with responsibilities, transportation, money) 4 (3.4) 4 (4.1) Helping me get around, getting my medication, taking me to the doctor and checking on me Help me with household responsibilities when I'm overwhelmed with work 9 (10.8) 8 (12.9) He helps me with some of the household chores Drive me places I need to go and tell me not to worry about it when I need help 4 (6.9) 4 (10.8) Could do a little more to help around the house so I don't feel I have to do it all and stay busy until bedtime.
Informational support SP provides advice, suggestions, or information 3 (2.6) 2 (2.1) can remind me of the benefits of taking medication. 6 (7.2) 6 (9.7) Help with finding out information By listening and suggesting alternative methods of combating stress 2 (3.4) 0 Remind me how important sleep is to me.
Appraisal support SP provides feedback or affirmation that the PWE can use for self-evaluation 0 0 11 (13.3) 6 (9.7) She can give me feedback with respect to my behavior so that I can identify anxious patterns more easily, and so be less likely to become identified with them. 0 0
Seizure and treatment management support SP helps with seizure and treatment management (e.g. monitor side-effects, interact with provider) 4 (3.4) 7 (7.2) They know what to do if I have a seizure She also lets me know if she notices any of the odd behaviors that indicate that I might be in a vulnerable state, and need to take extra medication in order to prevent a seizure from occurring 0 1 (1.6) Be there to take care of me when I do have a seizure They are in different households and know my health concerns. They know how to contact a dr or pharmacy if needed. 0 0
Does not have, need, or want help PWE indicates that they do not have support or do not want help from a SP. 10 (8.5) 4 (4.1) I don't want him to help me. My medicine is my business. He isn't here to 'keep up with me'. I don't 'keep up' with his medication. I do not believe anyone could verbally support me in taking the medication because I will become resentful towards that person. 8 (9.6) 2 (3.2) I don't want to be bothered by people. Nobody helps. Family all live overseas.. no need to worry them by talking about something that may resolve itself before I speak to them again 4 (6.9) 1 (2.7) They cant really they are in the same boat. Nothing
Other Not sure how SP could help. 1 (0.9) 0 I dont know 0 1 (1.6) Unsure 2 (6.9) 1 (2.7) Not sure.
Other Not about how a person could help 0 0 2 (2.4) 0 For son to listen to advice and counsel given to him to turn his life around. 0 1 (2.7) They are real educated.
WebEase WebEASE, a project funded by the Centers
for Disease Control and Prevention, is a
web-based, theory driven, self-management program
for people with epilepsy (PWE). WebEASE consists
of three modules that focus on medication
adherence, stress reduction, and sleep quality.
The program is designed so that participants
spend two weeks in each module. In the modules,
the participants 1) assess their readiness to
change behaviors related to medication, stress,
or sleep, 2) learn about the behaviors, and 3)
create a plan for change and assess their
progress toward their goal. The modules are
interactive, so that individuals read
information, respond to questions about behavior,
and receive feedback based on their
responses.3   In each module, participants are
asked to consider if there is a support person
who can help them with medication, stress, or
sleep behaviors (see Figure 1). Text boxes are
provided for the person to type in who the
support is and how that person can help.3
Figure 1. Screenshot of support questions in the
Medication module of WebEASE
A pilot test of WebEASE took place in 2007-08.
Pilot study participants were recruited from two
hospital based epilepsy clinics. A randomized
control trial (RCT) that employed a cross-over
waitlist design was conducted in 2008-2010. RCT
participants were recruited over the internet
from epilepsy websites and listservs. All
participants met the following inclusion
criteria diagnosis of epilepsy, 18 years of age
or older, English speaking, taking antiepileptic
medication (AED), access to a computer with an
Internet connection and willingness to
participate in the study.
Methods Data were downloaded from the WebEASE
website and the responses to the two questions on
social support were retrieved. Information from
both pilot and RCT participants were analyzed
together. The first question was coded for
number of support providers given and the
relationship of the person(s) to the PWE. The
second question was coded through an iterative
process that categorized the ways in which people
could help into categories. All coding was
completed separately by two individuals (EW and
YB). The researchers compared coding, discussed
discrepancies until consensus was reached, and
made adjustments in coding as needed. This
coding process revealed no major discrepancies in
code usage. Frequencies and descriptive
statistics were run in SPSS v.18 for the number
of support providers and provider relationships.
For the ways in which support providers could
help, the number of responses for each code was
tallied.
People with epilepsy indicated numerous ways in
which their support providers (SPs) could and do
provide help for performing behaviors related to
medication, stress, or sleep (see Table 3). In
many cases, PWE listed more than one example of
how SPs could or did help, resulting in more
coded sections than participants. In each
module, however, PWE who indicated that they had
a SP said that they did not have, need, or want
support from that person. Medication Module
SPs mainly aided PWE by providing reminders for
or monitoring of medication taking. Medication
reminders involved SPs reminding PWE to take
their medication as prescribed. A few PWE
indicated that reminders were helpful because
their memory was poor. For medication
monitoring, SPs actively make sure PWE take their
medication by asking if medication was taken and
double-checking pill boxes. SPs also gave
general support, and in fewer cases, emotional,
instrumental, or seizure/treatment
support. Stress Module Emotional support was an
important aspect of how SPs could help PWE reduce
stress, including having someone to talk to and
who would listen. General support, appraisal
support, and instrumental support, particularly
helping with responsibilities and providing
transportation, were also key themes. PWE also
mentioned that SPs could help by supporting their
strategies for reducing stress, such as reminding
the PWE to relax or exercising together. Sleep
Module PWE indicated that SPs could by
supporting their strategies to improve sleep,
such as going to bed earlier, turning off the TV,
or helping to reduce stress. General and
emotional support were also important.
Instrumental support, mainly helping out with
responsibilities and household chores, was
appeared less often. Limitations First, this
analysis involved individuals who participated in
the same program but were recruited through
different methods (clinic versus internet).
Although the demographic profile is very similar,
there may be differences in the populations.
Second, the data was limited to two questions
presented in the context of modules focused on
specific self-management behaviors. Therefore,
the data may not reflect all of the ways in which
support providers assist PWE.

• Implications
• The majority of PWE who participated in the
  WebEASE program identified at least one person as
  a support provider. Spouses/partners and parents
  were most often listed as SPs, which is
  consistent with other research.4-6 SPs offer a
  variety of support, including assistance that is
  specific to epilepsy and more general or
  emotional support. Major implications of this
  analysis can be summarized by the following
  points
• Support providers can be instrumental in helping
  PWE to manage their epilepsy. However a
  significant number of PWE do not have, want, or
  need support.
• Interventions to improve self-management
  behaviors of PWE could involve support providers,
  particularly spouses/partners and parents.
• Interventions to improve self-management
  behaviors of PWE need to consider a range of
  support needs beyond those related to specific
  behaviors (e.g. medication taking). Emotional,
  instrumental, and appraisal support are also
  important aspects to address.
• Alternative mechanisms for support, such as
  support groups, may be useful for PWE who do not
  feel that they have persons who can support them.

Figure 1. Sample Demographics
Sample   Thirty-five participants took part in
the pilot study and 148 were enrolled in the RCT.
While all pilot participants completed at least
one module, only 83 (56) of RCT participants
completed at least one module. The participants
in both studies were mostly female, white,
married, and had more than a high school
education. About half of the participants were
working (see Table 1). The majority of
participants experienced seizures.

• References
• DiIorio, C., Shafer, P., Letz, R., Henry, T.,
  Schomer, D., Yeager, K. (2004). Project EASE a
  study to test a psychosocial model of epilepsy
  medication managment. Epilepsy Behavior, 5(6),
  926-936.
• Gallant, M. P. (2003). The influence of social
  support on chronic illness self-management a
  review and directions for research. Health Educ
  Behav, 30(2), 170-195.
• DiIorio, C., Escoffery, C., McCarty, F., Yeager,
  K.A., Henry, T.R., Koganti, A., Reisinger, E.,
  Robinson, E., Kobau, R., Price. (2009). WebEase
  Development of a web-based epilepsy
  self-management Intervention. Preventing Chronic
  Disease, 6(1).
• Thompson, P. J., Upton, D. (1992). The impact
  of chronic epilepsy on the family. Seizure, 1(1),
  43-48.
• Westphal-Guitti, A. C., Alonso, N. B.,
  Migliorini, R. C., da Silva, T. I., Azevedo, A.
  M., Caboclo, L. O., et al. (2007). Quality of
  life and burden in caregivers of patients with
  epilepsy. J Neurosci Nurs, 39(6), 354-360.