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 theWebEASE 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 epilepsy;2,3however 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) 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 EducBehav, 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 NeurosciNurs, 39(6), 354-360.