Epilepsy & Behavior 23 (2012) Contents lists available at SciVerse ScienceDirect. Epilepsy & Behavior

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1 Epilepsy & Behavior 23 (2012) Contents lists available at SciVerse ScienceDirect Epilepsy & Behavior journal homepage: Social support for self-management behaviors among people with epilepsy: A content analysis of the WebEase program Elizabeth Reisinger Walker, Yvan Bamps, Andrea Burdett, Jennifer Rothkopf, Colleen DiIorio Department of Behavioral Sciences and Health Education, Rollins School of Public Health, Emory University, USA article info abstract Article history: Received 23 August 2011 Revised 14 January 2012 Accepted 17 January 2012 Available online 23 February 2012 Keywords: Epilepsy Self-management Online program Social support Internet Adherence Social support is an important component in managing epilepsy; however little is known about support provided to people with epilepsy. This study examined whom people with epilepsy identify as supportive, and how those individuals support people with epilepsy's self-management efforts. Data come from the WebEase project, an effective online epilepsy self-management program. People with epilepsy who participated in the pilot (n=35) and efficacy trials (n=118) were included. A content analysis was conducted on responses to open-ended questions related to support. The majority of participants provided information about their supporters. The number of support providers ranged from 0 to 6, with about 12% indicating no support. Parents and significant others were most commonly listed as supporters. Support providers mainly offer emotional and instrumental support, reminders and aid for taking medication, and support for self-management strategies. These results could be useful for interventions aimed at bolstering support in order to improve selfmanagement Elsevier Inc. All rights reserved. 1. Introduction People with chronic conditions must employ self-management behaviors in order to manage symptoms, slow disease progression, and maintain quality of life [1,2]. Self-management is particularly important for the roughly 3 million Americans with epilepsy who must take medications as prescribed and avoid triggers to prevent and control seizures [2,3]. Self-management behaviors are difficult to implement and maintain; up to 25% of people with chronic conditions [4] and about 25 40% of people with epilepsy (PWE; [5 7]) are nonadherent to their medical regimens. Nonadherence can result in increased symptom burden, greater functional disability, and higher health care utilization and costs [6,8]. For PWE, consequences of nonadherence can be serious, and include increased mortality [9], reduced seizure control [7,10], decreased productivity [7], job loss [7], and motor vehicle accidents [7,9]. PWE who are nonadherent report significantly higher incidences of emergency room visits, hospitalizations, and inpatient days compared to adherers, resulting in substantial health care cost increases [5,6]. Support can be important in helping people manage chronic conditions [4,11]. Greater social support is associated with better adherence to self-management behaviors for a variety of conditions, including diabetes [12,13], heart disease [11,14], and epilepsy [11]. Four main types of social support are emotional (provision of care, Corresponding author at: 1518 Clifton Rd., GCR 430, Atlanta, GA 30322, USA. Fax: address: ereisin@emory.edu (E.R. Walker). and being understood), instrumental (provision of tangible aid or services), informational (provision of advice and suggestions), and appraisal (provision of feedback useful for self-evaluation) [15]. Support may be general or specific to a particular condition, such as reminding PWE to take their antiepileptic medication at the proper time. Consensus on which type of support is most beneficial in promoting self-management behaviors has not been reached in the literature. According to meta-analysis results by DiMatteo, instrumental support has the highest correlation with adherence [4]. In another study on individuals with heart failure, emotional support was consistently related to self-management behaviors, such as medication and dietary adherence, but instrumental support was not [16]. PWE often receive support from a spouse, partner, parent, guardian, or other relative [17 19]. Though spouses can be a main source of support, the percentage of PWE who are married (51% for men and 48% for women) is lower compared to the percentage of married individuals in the United States population (63% for men and 59% for women) [20]. Interestingly, PWE who are married and with good support do not differ in self-reported health compared to PWE who are married and with poor support or who are unmarried, once demographic variables and mental health status were controlled for [21]. Some initial evidence points to the positive impact that support persons can have on PWE's self-management behaviors and health. Social support is positively associated with PWE's self-efficacy for performing self-management behaviors [22,23] and quality of life [24,25]. Gilliam and colleagues analyzed interactions between neurologists and PWE, and found that the presence of a companion at /$ see front matter 2012 Elsevier Inc. All rights reserved. doi: /j.yebeh

2 286 E.R. Walker et al. / Epilepsy & Behavior 23 (2012) appointments, usually a spouse or a parent, resulted in longer and more detailed discussions of medication side-effects [26]. Companions were often able to provide the neurologist with information that could aid the neurologist in treating the PWE, such as how the PWE's behavior may have changed over time [26]. Individuals with chronic conditions, including epilepsy, do not always receive the support they need or want. For example, results from the California Health Interview Survey demonstrate that a lack of emotional support has a greater detrimental effect on self-rated health for PWE compared to people without the condition [24]. Additionally, support can be perceived as nagging or unhelpful, particularly if a relationship is characterized by interpersonal strain or conflict [15,27]. Relationship strain is associated with depressive symptoms for both individuals with chronic illnesses and their supporters [28]. Therefore, interpersonal relationships can have dual effects of both providing support and causing stress [29]. The types of support that PWE receive or need for self-management have not been fully explored. The purpose of this study was to examine who PWE identify as support people and how these individuals can help PWE with self-management behaviors. We conducted a content analysis of the responses about support from participants in an online intervention for improving self-management among PWE. 2. Methods 2.1. Project description: WebEase WebEase, a project funded by the Centers for Disease Control and Prevention, is a web-based, theory driven, self-management program for PWE [30 32]. The program is based on principles derived from the Transtheoretical Model (TTM; [33,34]), Social Cognitive Theory (SCT; [35,36]), and Motivational Interviewing (MI; [37,38]). In accordance with the TTM, the content and strategies in the program are tailored to the participant's stage of change. SCT strategies for increasing selfefficacy and behavioral capability are employed through goal setting, feedback, and the presentation of stories from PWE. MI techniques include consideration of pros and cons and barriers to completing a behavior, open-ended questions with feedback, and reflective responses in which participants' thoughts are restated back to them. 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 or maintain 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 their behaviors, and receive feedback based on their responses. In each module, participants are asked to consider if there is a support person who can help them with medication, stress, or sleep behaviors. Text boxes are provided for the person to type in who the support person is and how that person can help Procedures The data for this analysis were drawn from the pilot and efficacy studies of the WebEase intervention. A pilot test of WebEase took place in Pilot study participants were recruited from two hospital-based epilepsy clinics. A controlled trial (CT) employing a crossover waitlist design was conducted in CT participants were recruited over the Internet from epilepsy websites and Listservs. The procedures and results of both studies are described elsewhere [30 32]. All participants met the following inclusion criteria: diagnosis of epilepsy (physician diagnosis in the pilot study and self-report in the CT), 18 years of age or older, English speaking, taking antiepileptic medication for at least three months, access to a computer with an Internet connection, and willingness to participate in the study. To prevent possible fraudulent participation, individuals were excluded if they had previously enrolled in the CT study, or if they attempted to enroll multiple times in the study. Approval from Emory University's Institutional Review Board was received for both studies Data analysis Data were downloaded from the WebEase website into Microsoft Excel 2007, and the responses to the two open-ended questions on social support were retrieved for analysis. In the WebEase online program, participants entered their responses to these questions into the textboxes; there were no restrictions on how the participants could answer the questions. Additionally, responses to the questions were not required, so participants could choose not to enter an answer. We conducted a content analysis, which is a method for describing phenomena by reducing qualitative data into categories that capture the main themes in the data [39,40]. For the first question, Think of one or two family or friends that may be able to help you Who are they?, the responses from Week 1 of each module were coded for number of support providers reported and the relationship of the support person(s) to the PWE. Given the textbox response format, participants were able to enter as many support persons as they wanted. For the second question, How can they help you?, responses from both weeks of each module were coded through an iterative process that categorized the ways in which people could help. A codebook was developed both deductively and inductively. For the deductive approach, codes were identified a priori based on theories of social support, which included the four main types of social support (emotional, instrumental, informational, and appraisal) [15]. The inductive approach involved identifying themes that emerged from the data. These emerging themes consisted of important patterns relating to the research question, in this case other types of support, which appeared repeatedly across the responses [41]. The first author coded all of the responses and revised the codebook as necessary. A second researcher separately coded the responses, ensuring that all relevant themes were identified. The researchers compared the coding, discussed discrepancies until consensus was reached, and made adjustments in the 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 demographic characteristics, number of support providers, and provider relationships to the PWE. Crosstabulations were used to compare the demographic characteristics of the pilot and the CT participants. For the ways in which support providers could help, the number of responses for each code was tallied for each week of the medication, stress, and sleep modules. 3. Results 3.1. Sample Thirty-five participants took part in the pilot study, and 148 were enrolled in the CT. While all pilot participants completed at least one module, only 83 (56%) of the CT participants completed at least one module. Across both studies, 118 individuals participated in WebEase out of 183 individuals enrolled, resulting in an overall participation rate of 64%. The participants in both studies were mostly female, white, married, and had more than a high school education (see Table 1). The participants' mean age was about 40 years of age. About half of the participants were working. The majority of participants experienced seizures in either the past year (pilot study: 80%) or the past month (CT: 64%). The only characteristic that was significantly different between the pilot study and the CT participants was race/ethnicity. The pilot study included a larger proportion of African Americans and smaller proportion of whites compared to the CT.

3 E.R. Walker et al. / Epilepsy & Behavior 23 (2012) Table 1 Demographics of WebEase participants at baseline for pilot study and randomized controlled trial (CT). Demographic characteristics 3.2. Number and relationship of support providers The number of people who completed the first week of the module was 105 for medication, 79 for stress, and 68 for sleep. Of these participants, 101 entered a response about their support providers in the medication module (96.2%), 70 responded in the stress module (88.6%), and 59 responded in the sleep module (86.8%). Across the modules, 11% to 12% of the participants indicated that they have no support provider (see Table 2). For the medication and stress modules, about 40% of the individuals listed one support provider, and 48% listed more than one provider. For the sleep module, 53% of the participants listed one support provider, and 36% listed multiple providers. Spouses/partners and parents were most commonly listed as support providers, followed by children, friends, siblings, other relationships, and healthcare providers (see Fig. 1). Depending on the module, the relationship of the support person to the PWE was not indicated in 13% to 30% of the responses How support providers help Pilot study (n=35) CT (n=148) Age (years) Range Mean (SD) 37.5 (12.6) (13.32) Gender, Female 21 (61.8) 109 (73.6) Male 13 (38.2) 39 (26.4) Race, White 23 (65.7) 132 (89.2) African American 11 (31.4) 2 (1.4) Hispanic 1 (2.9) 7 (4.7) Asian 3 (2.0) Other 4 (2.7) Marital status, Married 16 (45.7) 70 (48.6) Single 14 (40.0) 48 (33.3) Widowed, divorced, separated 5 (14.3) 26 (18.1) Employment status, Working 21 (61.8) 79 (53.4) Not working 13 (38.2) 69 (46.6) Education level, High school or less 9 (26.5) 20 (13.6) Some college or more 26 (73.5) 127 (86.4) Seizures, Yes 28 (80.0) in past year PWE indicated numerous ways in which their support providers could and do provide help with performing behaviors related to Table 2 Number of support providers indicated in each WebEase module. # Support providers Medication module (n=101) Stress module (n=70) 94 (63.5) in past 30 days Sleep module (n=59) Frequency Percent Frequency Percent Frequency Percent Mean medication, stress, or sleep management. Table 3 provides the codes, code definitions, frequency, and percent of each code in the three modules. In many cases, PWE listed more than one example of how support providers could or did help, resulting in more coded sections than the participants Medication module Support providers mainly aided PWE by providing reminders for or monitoring of medication taking. Medication reminders involved support providers reminding PWE to take their medication as prescribed. A few PWE indicated that reminders were helpful because their memory was poor. For medication monitoring, support providers actively made sure that PWE took their medication by asking if medication was taken and double-checking pillboxes. Support providers helped PWE employ strategies for taking medication by carrying extra doses with them and helping refill prescriptions. One participant wrote that their support provider has my medicines on automatic refill and she refills my pillbox as soon as it is empty. Support providers also gave general support, and in fewer cases, emotional, instrumental, or seizure/treatment support. One participant wrote that the support provider has had seizures for more years than I have. That is a great and understanding help and support system. Support for seizures and treatment involved the support person monitoring medication side-effects, knowing what to do if a seizure occurred, and attending doctor appointments with the PWE. One person noted that their support person 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 Stress module An important aspect of how support providers could help PWE reduce stress was emotional support, which was characterized by having someone who would listen and talk to them. The comment from a participant that their support person is there to Just listen to me when I need to talk about my problems was reiterated by others. General support, appraisal support, and instrumental support particularly helping with responsibilities and providing transportation were also key themes. An example of appraisal support was She can give me feedback with respect to my behavior so that I can identify anxious patterns more easily PWE also mentioned that support providers could help by supporting their strategies for reducing stress, such as reminding the PWE to relax or exercising together. One participant thought that their support person could Remind me to take time-outs and breathe Sleep module PWE indicated that support providers could help with strategies to improve sleep, such as going to bed earlier or turning off the TV. Suggestions included, Remind me not to stay up late and Be willing to go to sleep early as well. PWE mentioned that support providers could help them reduce stress so that they would be more relaxed and could sleep better. One support person makes sure that the area is a stress-free area and quiet. General and emotional supports were also important. An example of emotional support was Let me talk about the things I'm stressed about during the day so I don't worry about them at night Instrumental support, mainly helping out with responsibilities and household chores, appeared less often. The need for reminders to go to bed or not to stay up too late was also infrequently mentioned No support In each module, about 7 8% of PWE wrote that they either did not have, need, or want support. Some of these individuals initially indicated that support person(s) were available, and some said that they had no one in the first question. Several PWE felt that the

4 288 E.R. Walker et al. / Epilepsy & Behavior 23 (2012) Fig. 1. Relationship of support providers to people with epilepsy in each WebEase module. person(s) they listed were not supportive for reasons that included being too busy, being tired of helping them, or because the person's efforts were not helpful in the past. One participant wrote, They haven't [helped] yet, why should they start now?, and another commented, My roommate has an attitude that would not be very conducive for asking for help in a matter like this. A couple PWE did not want to worry their family or friends. A participant noted, Family all live overseas no need to worry them by talking about something that may resolve itself before I speak to them again. Finally, a few PWE did not want help because they did not want to rely on others, did not want others monitoring them, or were managing fine without support. One participant wrote, I don't need support I'm fine taking my medicine. I get annoyed when people check up on me. 4. Discussion The purpose of our study was to examine whom people with epilepsy identify as support providers and how those people can or do help PWE manage their condition. 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 support providers, which is consistent with other research on PWE [17,18]. Support providers offer a variety of support, from assistance that is specific to epilepsy to general and emotional supports. The most commonly-mentioned support specific to epilepsy self-management behaviors included reminders to take medication, monitoring of medication taking, and support for enacting strategies to take medications, reduce stress, and improve sleep quality. Our results indicate that emotional, instrumental, and appraisal supports are also important aspects. Some of the ways in which support persons can help PWE are similar to those identified by individuals with other conditions. Boutin-Foster found that patients with coronary artery disease reported that the most helpful support facilitates engagement in healthy behaviors, reduces stress, and enables easier access to medical care [42]. Support providers can be instrumental in helping PWE to manage their epilepsy. However, a lack of social support is associated with greater activity limitation and disability, depressive and anxiety symptoms, poorer self-rated health, and decreased satisfaction with life [43]. A significant minority of PWE in this study does not have, want, or need support. The participants in both the pilot and the CT studies tended to have high scores on the self-management scales [30,32], which suggests that these could be individuals who actively seek out information to help them with self-management. As indicated in the results, they may not need or want support because they can successfully manage their epilepsy on their own or the support they receive is not helpful to them. Alternative mechanisms for support, such as support groups or online discussion forums, may be useful for PWE who do not feel that they have persons who can support them or feel that they cannot rely on family or friends. These options, however, are unlikely to aid individuals who do not want help or may Table 3 Numbers of coded responses to how Support Providers (SP) can help People with Epilepsy (PWE). Code Description Medication module Stress module Sleep module Week 1 (n=131) Week 2 (n=108) Week 1 (n=83) Week 2 (n=65) Week 1 (n=64) Week 2 (n=37) Reminders SP remind PWE of medication, stress, or sleep behavior 38 (29.0) 29 (26.9) (7.8) 4 (10.8) Monitoring SP check that the PWE has completed medication, stress, or sleep behavior 23 (17.6) 21 (19.4) Strategy support SP help PWE to employ strategies for medication, stress, or sleep behaviors 9 (6.9) 10 (9.3) 11 (12.9) 10 (15.4) 22 (34.4) 9 (24.3) General support SP provide unspecified support. 19 (14.5) 19 (17.6) 18 (21.2) 16 (24.6) 16 (25.0) 10 (27.0) Emotional support SP provide caring, encouragement, and understanding. 12 (9.2) 8 (7.4) 20 (23.5) 16 (24.6) 8 (12.5) 6 (16.2) Instrumental support SP provide tangible aid and/or services (e.g. help with responsibilities, 6 (4.6) 5 (4.6) 10 (11.8) 8 (12.3) 4 (6.3) 4 (10.8) transportation, money) Informational support SP provide advice, suggestions, or information 3 (2.3) 3 (2.8) 6 (7.1) 6 (9.2) 2 (3.1) 0 Appraisal support SP provide feedback or affirmation that the PWE can use for self-evaluation (11.8) 6 (9.2) 0 0 Seizure and treatment SP know what to do and can help prevent a seizure and/or help afterwards. 5 (3.8) 7 (6.5) 0 1 (1.5) 0 0 support Does not have, need, PWE indicate that they do not have and/or want help from a SP. 15 (11.5) 5 (4.6) 7 (8.2) 2 (3.1) 3 (4.7) 2 (5.4) or want help Other Not sure how SP could help. 1 (0.8) 0 1 (1.2) 1 (1.5) 2 (3.1) 1 (2.7) Not sure about how a person could help 0 1 (0.9) 1 (1.2) 0 2 (3.1) 1 (2.7)

5 E.R. Walker et al. / Epilepsy & Behavior 23 (2012) not be necessary for PWE who are successfully managing their condition on their own. The results of this study align with Social Cognitive Theory (SCT), one of the theories that the WebEase program was based on. According to SCT, social support is beneficial in order to begin and sustain self-management behaviors [36]. In that vein, support providers aid PWE in taking medication, monitoring stress, and recognizing the situations under which seizures are more likely. The results are also congruent with theories of social support, which state that support can either mediate or buffer the relationship between the stress of living with a chronic condition and health behaviors [15,44]. Social support theories assume that supporters intend their support to be beneficial [15]; however, the results from this study indicate that PWE did not always perceive the support as desired or helpful. In a study by DiIorio and colleagues, epilepsy-specific support was positively associated with anxiety, while general support was associated with self-efficacy. The researchers suggest that epilepsy-specific support could be viewed as nagging, may be perceived negatively, or remove decision-making power or control from the person with epilepsy [27]. Since many of the respondents in this study received epilepsy-specific support, additional research to explore the perceptions of such support is warranted. The major strength of this study is that we were able to analyze information about how support people can aid PWE, which has not, to our knowledge, been previously examined. The data were drawn from an effective program for improving self-management among PWE. Participants in the pilot study showed improvement in selfmanagement, medication adherence, sleep quality, self-efficacy and social support [30]. Participants in the CT who completed at least some of the modules reported significantly higher levels of selfefficacy and improvements in medication adherence, perceived stress, overall self-management, and knowledge [32]. This study has several limitations. First, this analysis combined the responses of individuals who participated in the same program but who were recruited through different methods (clinic versus Internet) for different phases of intervention testing. Although the demographic profile is very similar, there may be unmeasured differences in the populations. Additionally, the participation rate varied greatly between the studies; only about half of the people enrolled in the CT actually participated in the WebEase program. Second, this analysis 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. Additionally, we were unable to determine the extent to which the support was effective or the PWE were satisfied with the support. Third, WebEase participants were not asked to state their relationship to the support person, so the relationship is unknown for about 13% of support people reported in the medication module and around 30% in the stress and sleep modules. Also, for participants who completed the module but did not respond to the social support questions, we were unable to determine if the lack of response was because they did not have support or because they did not want to answer the questions. This study provides insight into whom PWE identify as support providers and the ways in which those individuals aid PWE in managing medication taking, stress, and sleep. This information can be useful for enhancing support-based interventions to improve self-management behaviors of PWE. Developers of such interventions need to consider a range of support needs and could include support providers, particularly spouses/partners and parents, as active participants. Additionally, clinicians can use these results when considering patients' support needs and available support, as well as how to involve support providers in discussion of the patients' self-management. Including support providers offers clinicians two opportunities: 1) to gain a fuller understanding of patients' self-management procedures, and 2) to equip patients and support persons with strategies to improve or maintain PWE's self-management behaviors. Future research could determine the effectiveness of the support provided and the ways in which support for PWE operates similarly to or differently from individuals with other chronic conditions. 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