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 Abstract Social support is an important component in managing chronic conditions such as epilepsy; 2,3 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. 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 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. Figure 1. Screensh ot of support question s in the Medicati on module of WebEASE References 1.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. 2.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. 3.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). 4.Thompson, P. J., & Upton, D. (1992). The impact of chronic epilepsy on the family. Seizure, 1(1), 43-48. Code Description Medication Module Stress Module Sleep Module Week 1 (n=117) Week 2 (n=97) Examples Week 1 (n=83) Week 2 (n=62) Examples Week 1 (n=58) Week 2 (n=37) 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 I’m stressed about during the day so I don’t 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 can’t really – they are in the same boat. Nothing Other Not sure how SP could help. 1 (0.9) 0 I don’t know 0 1 (1.6) Unsure 2 (6.9) 1 (2.7) Not sure. 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. 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 3. Numbers and examples of coded responses to how the Support Provider (SP) can help the Person with Epilepsy (PWE) 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 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: 1.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. 2.Interventions to improve self-management behaviors of PWE could involve support providers, particularly spouses/partners and parents. 3.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. 4.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. 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. Figure 1. Sample Demographics Table 2. Number of Support Providers indicated by PWE in each WebEASE module Figure 2. Relationship of Support Providers to PWE in each WebEASE module
description
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. - PowerPoint PPT Presentation
Transcript of Social support for self-management behaviors among people with epilepsy:
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
Abstract
Social support is an important component in managing chronic conditions such as epilepsy;2,3 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.
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
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.
Figure 1. Screenshot of support questions in the Medication module of WebEASE
References1.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), 926-936.2.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), 170-195.3.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). 4.Thompson, P. J., & Upton, D. (1992). The impact of chronic epilepsy on the family. Seizure, 1(1), 43-48.5.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.
Code Description Medication Module Stress Module Sleep ModuleWeek 1(n=117)
Week 2(n=97)
Examples Week 1(n=83)
Week 2(n=62)
Examples Week 1(n=58)
Week 2(n=37)
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 I’m stressed about during
the day so I don’t 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 can’t really – they are in the same boat. Nothing
Other Not sure how SP could help.
1 (0.9) 0 I don’t know 0 1 (1.6) Unsure 2 (6.9) 1 (2.7) Not sure.
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.
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 3. Numbers and examples of coded responses to how the Support Provider (SP) can help the Person with Epilepsy (PWE)
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:
1.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. 2.Interventions to improve self-management behaviors of PWE could involve support providers, particularly spouses/partners and parents.3.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.4.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.
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.
Figure 1. Sample Demographics
Table 2. Number of Support Providers indicated by PWE in each WebEASE module
Figure 2. Relationship of Support Providers to PWE in each WebEASE module
