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Using a webcast support service: Experiences of in-person attendees of an implantable cardioverter defibrillator support group
ISSUES IN CARDIOVASCULAR NURSING
Using a webcast support service: Experiences of in-person attendees of an implantable cardioverter defibrillator support group Eva R. Serber, PhD,a Nancy J. Finch, RN, PhD,b Lawrence B. Afrin, MD,c and W. James Greenland, BSd
OBJECTIVE: Most patients with implantable cardioverter defibrillators (ICDs) adjust well to living with the device; however, some experience difficulties. Support groups assist in coping with the psychologic effects of living with an ICD. The study’s aim was to examine acceptability of the in-person attendees of an ICD support group that was cast on the Internet. SAMPLE: A patient satisfaction survey describing the participants’ experience was used as a measure of acceptability in this non-experimental, survey, pilot study. METHODS: The survey assessed reactions of the in-person participants with ICDs (N = 46) to the introduction of webcasting and remote participation by other individuals with ICDs. Descriptive statistics were conducted. RESULTS: Participating in a webcasted support group was viewed as highly favorable, and responses indicated high satisfaction. CONCLUSION: Participants were satisfied with the webcast technology, enabling broader access to patients. Research is needed to assess the acceptability and satisfaction among remote participants and the group’s effectiveness on clinical outcomes. (Heart LungÒ 2010;39:94–104.)
T
he implantable cardioverter defibrillator (ICD) has become the dominant therapeutic modality for patients with or at high-risk for lifethreatening ventricular arrhythmias.1-4 Although most ICD recipients adjust well to living with the device, as little as 10% and up to as much as 46% experience symptoms or diagnosable conditions of anxiety and depression from 1 to 5 years post-ICD From the aCenters for Behavioral and Preventative Medicine, The Miriam Hospital and The Warren Alpert Medical School of Brown University, Providence, Rhode Island; bTransplant Center and the College of Nursing, Medical University of South Carolina, Charleston, South Carolina; cDivision of Hematology/Oncology, Medical University of South Carolina, Charleston, South Carolina; dHollings Cancer Center, Medical University of South Carolina, Charleston, South Carolina. Funding for this project was provided by the US Department of Defense (Grant N000149611298, PI: Afrin), the US Department of Energy (Grant DE-FG02-01ER63121, PI: Afrin), and Medtronic Inc. Reprint requests: Eva R. Serber, PhD, CBPM, CORO Building, Suite 500, One Hoppin Street, Providence, RI 02903. E-mail: [email protected] 0147-9563/$ – see front matter Ó 2010 Elsevier Inc. All rights reserved. doi:10.1016/j.hrtlng.2009.06.003
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implantation.5-7 The psychologic changes associated with life-threatening arrhythmias and ICD therapies affect not only physical and mental health but also social and role functioning.8
SUPPORT GROUPS Support groups have been described to reduce stress and enhance adjustment, and to meet the educational and emotional needs of patients with ventricular tachycardia, providing a forum in which patients can share problems, fears, concerns, and questions with their peers.9-11 Qualitative reports from patients and their spouses after participating in an ICD support group indicated an improved ability to cope, a positive adjustment to the device, an increased satisfaction with life, and a connection with other ICD recipients.10-13 Support groups are often led or facilitated by trained healthcare professionals. The facilitator can provide information about medical conditions, answer technical questions, and correct incorrect information. The facilitator also fosters individual
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participation, group cohesion, empowerment, and hope, and maintains topic relevance and provides further resources if needed.14 Specific to patients with ICDs, facilitators are valuable for working through the fear of potential sudden cardiac death by encouraging participants to share stories and gain a positive attitude.13 Dickerson and colleagues14 found that using a clinical nurse specialist as facilitator of an ICD support group was essential. The clinical nurse specialist facilitator initiated group process, guided group discussions, used therapeutic communication, provided education, counseled, and made referrals for patients that needed help.14 The role of the professional facilitator was a key component in face-to-face support groups. However, computer-mediated support forums often do not have a trained facilitator.15
INTERNET SUPPORT Many patients who might benefit from support group meetings face significant challenges in attending, such as physical mobility issues, travel conflicts, or time constraints. Electronic communications via the Internet provide wide access to support that is exempt from space, time, and age barriers.16,17 The increase in home computer ownership18 and the popularization of the Internet19 provide novel access to support groups for interested patients. Live chat rooms (and related instant messaging technologies), group emailing (‘‘listservs’’), and Web-based bulletin boards are feasible for this purpose.20-22 These approaches have been efficacious in medical symptom monitoring23,24 and programs for psychologic symptom monitoring and treatment.25,26 However, few formal efficacy assessments have been made of these purely text- or messaging-based methods,20-22 and no formal, comparative assessments to support group meetings (let alone a live support group on the Web) have been reported. Little is known about the experience of seeking support through Internet communications or whether discussion through a medium that lacks affective face-to-face nonverbal cues is helpful.20-22 It is assumed that with the benefit of in-person support groups, ‘‘online’’ mediums would provide a logical extension of this support. In a strictly observational study, Dickerson and colleagues15 described helpseeking experiences by observing discussions posted on an informal public electronic bulletin board for persons with ICDs. After studying hundreds of interactions (469 postings by 75 users over 15 months), they suggested that patients with ICDs experienced a therapeutic connection similar to forming a therapeutic friendship as described by participants in a face-to-face support group.13 The researchers15 con-
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cluded that persons with ICDs were proactive in using Internet bulletin boards to seek practical information and support in coping and adjusting to the ICD. Individuals gain benefit from computer-mediated support modalities; however, some limitations exist when modalities are not monitored or facilitated. The absence of a healthcare facilitator may increase the potential for unreliable posted information.15 Control in the group may not exist, allowing for 1 or 2 members to monopolize the discussion, preventing others to share, or moving the discussion away from topics beneficial and directly relevant to the specific concerns of the group. Finally, an unmonitored group does not have someone trained in recognizing or containing problems that warrant clinical attention (medical or psychologic). This has been seen in a cancer online support group.27,28 Internet communication also has a risk for miscommunication. A large proportion of communication occurs nonverbally, through auditory and visual cues. This is particularly true for emotions. For example, email communication has been associated with miscommunication, attributed to the lack of cues available to both the sender and the receiver of the communication.29 Face-to-face communication provides cues nonverbally (eg, facial expression, voice intonation) and through paralanguage and social context.30 Daft and Lengel31 recommended that for computer-mediated communication, messages should be ‘‘very simple’’ and not used for messages that are ‘‘ambiguous, emphatic, or emotional’’ (p. 57). Provided only written communication, usually seen in Internet communication, messages may lack clarity of content, clarity of emotion, and intensity of emotion in both expression and perception.29 Given communication theory, it is reasonable to hypothesize that because of the lack of auditory and visual interaction in Internet forums, the text-only discussions of emotional issues, although beneficial, may not be as advantageous to the participants as face-to-face support group discussions.20,21 The advantages of Internet discussion as a mechanism of support, particularly with ICD recipients, have not been thoroughly examined. In addition, a nurse-facilitated support group cast on the Internet that has both auditory and visual interaction could be thought to provide greater benefit to participants. This pilot study of acceptability was the first step in examining online and interactive nurse-facilitated support groups.
Statement of purpose The ability to use Internet communication as a support link to persons with similar experiences transcends traditional care and benefits those who
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participate. Additional research is needed to further understand Internet communications and Webbased support groups, and their usefulness as support intervention for ICD recipients. The primary aims of the larger project were to examine the feasibility and acceptability of a live support group cast on the Internet. The results of the feasibility of technologic design, methods, and materials have been reported (http://doi.ieeecomputersociety.org/10. 1109/HICSS.2005.309).32 In the current article, acceptability data for the in-person support group participants are presented.
MATERIALS AND METHODS Sample The current sample was one of convenience, including the individuals who attended the in-person support group. This ongoing ICD support group was used for the webcast. The sample included ICD recipients (n = 29) and caregivers (n = 17). This sample does not include remote participants. Institutional support groups were solicited via email to participants in the initial feasibility testing. The ICD Support Group, moderated by NJF, was selected after participants were consulted and gave informed consent. The ICD support group was initiated 13 years ago at an academic medical center. The group met monthly with 5 to 10 participants attending. Sessions were guided by a nurse facilitator and structured to provide education (guest speakers) and support to those in attendance.
Setting, equipment, and security A prototype of a confidential Web-based method for remote participants to attend in-person support group meetings was developed (Fig 1). The Support Group Webcasting Service (SGWS) is a method that allows remote participants to ‘‘attend’’ live, inperson support group meetings, receiving an auditory and visual experience and actively contributing their own thoughts and comments to the group’s discussion in real-time. However, remote participants’ contributions were monitored by the nurse facilitator who served as the conduit to the group. In-depth information regarding the setting, equipment, and security are provided in the initial article.32 In brief, in-person participants continued to attend the support group as they had in the past; however, now the room was equipped with a microphone in the middle of the room, and the facilitator used a laptop and Web-camera with a microphone to connect the remote participants to the in-person group members (Fig 2). Confidentiality was of utmost
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importance, with participants addressing each other by first name only, and they were not seen by the remote participants. The remote participants needed only an Internet-connected computer, Windows Media Player (Microsoft Corp, Redmond, WA), and their secured access codes. They engaged in the group by typing comments to the facilitator, listening to the discussion, and watching the facilitator only (Fig 3). Remote participants also reaffirmed a confidentiality agreement at each log-in with secured access and firewall.
Procedure This was a non-experimental, survey, pilot study conducted to examine the reactions of an established in-person ICD support group to the introduction of webcasting and remote participation by post-ICD individuals and family members. Approval for this study was obtained from the Medical University Institutional Review Board. After development of the SGWS technology was completed, institutional support groups were solicited to participate in the initial testing phase. As mentioned, the ICD Support Group was selected for the initial feasibility and acceptability study after participants were consulted and gave informed consent (November). Phase I. The December meeting was used to test the ‘‘technology’’ during an internally webcasted meeting. This meeting was an opportunity to acquaint the in-person participants and the facilitator (NJF) of the support group with the hardware set-up (laptop computer, golf ball-sized camera, and microphone) and test the remaining software components. Phase II. During the January meeting, 1 ICD recipient volunteer came to the Telemedicine Lab and participated as a remote member of the group. Webcast developers (LBA, WJG) directly observed the participant accessing the SGWS. He seemed to have no difficulty independently logging in to the service, selecting the correct group, viewing and hearing the meeting, and participating using the on-screen text input box to submit comments and questions to the group through the facilitator (Fig 4). Phase III. During the February meeting, the same ICD recipient was directly observed from his home computer, where he had no difficulty participating in the meeting remotely using broadband Internet access (no extra technology required). Phase IV. A letter about the SGWS was sent to patients on the ICD support group mailing list. The letter directed those interested to a Web page to view a test video. The video provided a passphrase that
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Fig 1 Schematic of SGWS (not to scale). This is a pictorial overview of the webcast setup. Figure printed with permission (Ó 2005 IEEE).32
viewers were asked to email to the webcast director to verify they had the computer/Web skills necessary to use the SGWS. Four verification responses were received (2 in the local metro area and 2 > 100 miles from the medical center). Prospective participants were registered and received password-protected access to SGWS after signing an agreement on password protection and confidentiality. Security arrangements ensured only authorized members could access or ‘‘tune in’’ to the webcast meetings. Confidentiality of the members attending in-person sessions was preserved. Phase V. During the March meeting, the 4 registered participants ‘‘tuned in’’ via webcast and joined the live in-person support group session. The Web participants were contacted by phone soon afterward and reported positive satisfactory experiences (access to webcast support group session). The in-person ICD support group had expanded across the state. Phase VI. A description of the SGWS was posted on 2 Web-based message boards for ICD recipients. Fifteen verification responses were received from ICD recipients throughout the United States, Europe, and Australia. They were registered and received authorization to access the SGWS. Phase VII. During the April meeting, the inperson ICD support group was online via the World Wide Web. Remote participants actively attended
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Fig 2 Webcasting equipment. This was the equipment used by the facilitator to cast the ICD Support Group on the World Wide Web (laptop computer and Web-camera with built in microphone). Figure printed with permission (Ó 2005 IEEE).32
the meeting where they successfully submitted comments and questions to the facilitator. Most of these patients reported they had long wanted to participate in an ICD support group, but their remote locales prevented convenient access to such groups. Six in-person participants attended the session and openly engaged in the group experience. Group interaction occurred among all participants, including the guest speaker and facilitator. The in-person
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Fig 3 Remote participants’ online screen. Remote participants would see the ICD Support Group facilitator and be able to type comments to the facilitator. Figure printed with permission (Ó 2005 IEEE).32
ICD support group had expanded across the United States and the globe. During the May to November meetings, local, national, and international participation was noted. Four to 8 remote participants signed on for each session. Group interaction was noted among in-person and remote participants and seemed to be successful.
and (2) describe his/her willingness to recommend a session like this one to other ICD recipients. Participants attending the support group inperson completed the survey at the conclusion of each support group session, with a return rate of 100%. Data were collected for 8 consecutive months (April to November).
Measure: Participant satisfaction survey
Data analysis plan
A self-report questionnaire was developed to measure satisfaction (ie, acceptability) of those participants attending in-person to the ICD support group (ie, not the remote participants). It was their support group sessions that were transmitted over the Internet (SGWS). Satisfaction was assessed with eight 5-point Likert-style questions with anchors varying contingent on what the item was measuring (eg, very uncomfortable–very comfortable). The response choices were for comfort, helpfulness, effect, willingness, and satisfaction. By using a 1% to 100% rating scale, the response choices were valued as 1, 25, 50, 75, and 100. Subjects were asked to mark anywhere on the scale that best represented how they felt. Two open-ended questions were also included to elicit descriptive comments: (1) describe his/her willingness to participate in another session like this one
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First, descriptive analyses (eg, means, standard deviations, percentages) were computed for the individual closed-ended items on the questionnaire (SPSS; version 14.0, SPSS Inc, Chicago, IL). Second, descriptive responses of the 2 open-ended items were transcribed and summarized. Data were examined using content analysis and categorized accordingly.33
RESULTS Participant characteristics Forty-six participants (63% ICD recipients, 37% family/friend caregiver) completed the satisfaction survey (44% were male). All were Caucasian except for 1 African-American. Although exact age was not collected, the majority were 61 years and older (81%). Demographic characteristics of the total
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Fig 4 On-screen text input box. Screen displays textual comments submitted from remote participants to the group via the facilitator during a live support group meeting. Figure printed with permission (Ó 2005 IEEE).32
sample, and broken down by patient and caregiver, are provided in Table I. Of significance, caregivers were more often women compared with the patients (F = 22.26 [1, 41], P < .001).
Item responses There were no significant differences in responses between the ICD recipients and the caregivers (P = .369); therefore, data were combined. Those attending the in-person ICD webcasting support group sessions found the experience to be particularly positive. There were no statistical differences by role in any response category. The individual items and percentage rates are presented in Table II. The majority of respondents reported being ‘‘somewhat’’ to ‘‘very comfortable’’ with the session being transmitted over the Internet to remote participants (86.7%). More than 83% of respondents rated that the contributions from the remote participants were not only helpful to them as individuals but also to the group as a whole. Almost all of the respondents (91.3%) reported that the session’s Internet transmission had ‘‘minor’’ to no effect on what they said or did not say in the group interaction. ‘‘Minor effect’’ was defined as ‘‘occasionally I decided not to say something or I rephrased something I was going to say.’’ Also rating favorably, 93% of respondents stated that they would be willing to participate in another webcasted session, and 98% were willing to recom-
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mend a webcast session to other ICD recipients. One participant indicated that s/he thought there should be a limit on the number of group members participating remotely, as stated ‘‘only if it interfered with the quality of the session.’’ Most important, 91% of respondents reported an overall ‘‘satisfaction’’ with the experience of participating in the ICD SGWS.
Descriptive themes Predominant themes that were identified from the experience of those participants who attended a webcasted support group session were gaining information, having interaction, benefiting others, accessibility, and gaining support and education. Sample comments for each theme are presented in Table III. Gaining information and interaction. The participants described the webcasted sessions as informative and interactive. The webcasted sessions were a way of acquiring information from professional experts. The webcasted sessions also provided a setting for discussion and interaction among peers. Benefiting others and accessibility. The participate thought that the webcasted sessions could be helpful to others and were willing to participate in future sessions transmitted over the Internet. Themes related to accessibility and uses of the Internet were related to the Internet as a tool for information and reaching a broader audience.
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Table I Demographic characteristics from ICD post-support group survey respondents: In-person participants Respondent Variable
Respondent ICD patient Family/friend Gender Male Female Race Caucasian African-American N/R Age (y) <40 41-50 51-60 61-70 71-80 >80
ICD patient n
29 n/a
Caregiver (family/friend)
%
100 n/a
n
n/a 17
18 11
62.1 37.9
2 15
27 1 1
93.1 3.4 3.4
17 0 0
0 4 2 6 8 9
0 13.8 6.9 20.7 27.6 31.0
3 0 0 2 9 3
Total sample (N = 46)
%
n
%
n/a 100
29 17
63.0 37.0
20 26
43.5 56.5
44 1 1
97.8 2.2 2.2
3 4 2 8 17 12
6.5 8.7 4.3 17.4 37.0 26.1
11.8 88.2 100 0 0 17.6 0 0 11.8 52.9 17.6
ICD = implantable cardioverter defibrillator; n/a = not available; N/R = not reported.
Gaining support and education. The webcasted sessions offered support and education to group members, as well as mutual benefit from other remote participants.
DISCUSSION There is growing literature examining online modalities for education, support, and treatment among patients with acute and chronic conditions; however, to date, this represents the first in-person, nurse-facilitated support group to be broadcasted via the Internet for remote participants to actively engage in the group process. Although the experience of the remote users is of great interest and importance, the current analysis examined the acceptability of this format via the in-person ICD support group participant only. Their experience of their group posted real-time over the World Wide Web and enabling other remote ICD patients and families to participate was assessed by a selfreport survey. Two main findings were that the inperson participants reported high acceptability of the technology and group process, citing high satisfaction and benefit to themselves and the remote
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users. Findings were comparable to Heller and colleagues’34 ICD support group, who rated the group 96% as helpful. The second finding was that the content themes emerging from open-ended questions were similar to previous online focus groups and investigations of Internet bulletin boards illustrating the support link using ‘‘therapeutic connection.’’15 The SGWS provided a forum of support using interactive communication whereby participants shared ‘‘personal perspectives’’ through storytelling. Therefore, it was not only feasible from a technical and logistic standpoint32 but also efficacious in providing a beneficial ‘‘support link’’ to in-person participants who were present and presumed to be for those attending via webcast. The study findings are also consistent with the existing literature regarding use of the Internet as a source of support and overcoming barriers of accessibility, transportation, and location of participants. Other Internet forums, such as bulletin boards, chat rooms, and e-mail listservs, lack auditory and visual interactions.15,20,21 However, this Internet support group overcame such limitations with a live, visual, online support group that allowed
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Table II Ratings from respondents on the ICD post-support group survey Questions
Q1: How comfortable were YOU about the session being transmitted over the Internet to remote participants? Q2: How helpful do you think it was to YOU today that group members located remotely were able to contribute their thoughts to the meeting? Q3: How helpful do you think it was to THE GROUP today that group members located remotely were able to contribute their thoughts to the meeting? Q4: Did today’s session being transmitted over the Internet have any effect on your decisions about what to say or what not to say during the session? Q5: How willing do you think you will be to participate in a session like this again? (session gets transmitted over the Internet to remote participants) Q6: How willing are you to recommend a session like this to other ICD patients or their family members? Q7: Does it matter to you HOW MANY group members are participating remotely? Q8: Overall, based on the session you had today, how satisfied are YOU with ‘‘The MUSC Support Group Webcasting Service’’?
Answer choices
Very uncomfortable Somewhat uncomfortable Neither comfortable nor uncomfortable Somewhat comfortable Very comfortable Very unhelpful Somewhat unhelpful Neither helpful nor unhelpful Somewhat helpful Very helpful Very unhelpful Somewhat unhelpful Neither helpful nor unhelpful Somewhat helpful Very helpful No effect Minor effect Moderate effect Major effect Extreme effect Very unwilling Somewhat unwilling Neither willing nor unwilling Somewhat willing Very willing Very unwilling/unhelpful Somewhat Unwilling/unhelpful Neither willing nor unwilling (neither helpful nor unhelpful) Somewhat willing/helpful very willing/helpful Not at all Mildly Moderately Considerably Extremely Very dissatisfied Somewhat dissatisfied Neither satisfied nor dissatisfied Somewhat satisfied Very satisfied
% Respond
11.1 0 2.2 20.0 66.7 7.1 0 9.6 21.4 61.9 7.0 0.0 9.3 23.2 60.5 47.8 43.5 4.4 4.3 0 2.2 4.4 0 15.6 77.8 0 2.2 0 24.4 73.3 86.7 4.4 6.7 0 2.2 6.5 0 2.2 28.3 63.0
ICD = implantable cardioverter defibrillator; MUSC = Medical University of South Carolina.
interaction with the group facilitator, in-person, and remote participants. The facilitator engaged the remote participants by sharing their questions and comments with the in-person support group. Sampled in-person attendees reported that they were
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not inhibited by remote participants and received the benefit of helping others like themselves. Both in-person and remote ICD participants actively participated in dialogue and supportive interaction, as noted by the support group facilitator.
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Table III Sample comments written by participants divided by themes Theme: Gaining Information and Interaction ‘‘The speaker was excellent.’’ ‘‘I enjoyed the comments and interactions with remote users.’’ Theme: Benefiting Others and Accessibility ‘‘I hope our group can be helpful to others.’’ ‘‘Hopefully, it will improve their life.’’ ‘‘The Internet can be used to reach a broader population.’’
‘‘I enjoyed the information from the speaker.’’ ‘‘The Web-based questions and interactions were helpful.’’
‘‘Sharing our own experiences may help new patients.’’ ‘‘.excellent opportunity for those who were unable to attend.’’ ‘‘The Internet is a great learning tool.’’
Theme: Gaining Support and Education ‘‘The support is part of the healing.’’ ‘‘I enjoyed getting information from around the world.’’
‘‘It makes it more than just a support group.’’ ‘‘Everyone needs more education on ICDs.’’
ICD = implantable cardioverter defibrillator.
Limitations The current study investigated acceptability of an Internet webcast technology using a small sample of in-person attendees. There are 3 significant limitations to the study; however, we think the strengths of the study’s applications outweigh the weaknesses. First, it was a highly, self-selected and small sample of ICD participants who were attending the group inperson, face-to-face. They were long-standing active support group participants who likely already had a high degree of cohesion and satisfaction. They also may be inclined to rate satisfaction because of all the efforts that were put forth to conduct the webcast group.35 Second, and possibly of greatest interest to some, these data do not provide any information on how remote participants would rate satisfaction or acceptability. It is assumed that the experience was at minimum satisfactory, because they continued to log into sessions over time. Third, the limited amount of data collected on these in-person participants leave many questions unanswered. Their past or current psychologic well-being was unknown, and this study did not examine how this webcast support group influenced psychologic well-being, quality of life, or health status of the participants over time. It is important to note that we did not have 100% satisfaction with the webcast group. A small
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proportion did indicate that they were not comfortable or did not find it to be helpful. Some literature suggests our satisfaction rates are comparable to other groups.34 It is also reasonable that despite the high proportion who did rate the experience as comfortable, beneficial, or satisfactory, there will always be some who will not be pleased. Further study is needed to determine sources of discomfort and remedies to resolve areas that were unsatisfactory and to increase participant benefit.
Future research Prospective studies are needed to examine the SGWS experience from a biopsychosocial perspective, collecting data pre-and post-group participation from both in-person and remote attendees. In addition, clinical trials comparing groups of support group webcasts and other online modalities, information-only Websites, and standard care or control groups are needed to understand the efficacy of this approach across the full spectrum of participants.
Clinical implications The Internet is becoming more accessible and affordable to people of all ages, races, ethnicity, and socioeconomic groups. Those with chronic
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illness and physical mobility issues are a prime group of individuals who may benefit from remote access to health education and support. It behooves those in clinical practice to continue finding appropriate ways to use the Internet as a resource, including providing emotional support and healthcare information to patients with cardiac disease. Previous research and the current findings suggest that ICD recipients are amenable to and want Internet communication and support.15
CONCLUSIONS These ICD participants reported satisfaction and utility of their support group cast on the Internet. The strength of this support group was that it was a live, real-time support group that allowed remote participants to attend and included both auditory and visual interactions. More research is needed to determine effectiveness for SGWS in clinics. More clinical practice is needed to determine the effectiveness and applicability of this intervention. There are several possible benefits. For providers, the Internet represents a time-saving mode of simultaneously reaching many individuals. For both patient and provider, the Internet is cost-effective, connecting people with similar needs who may not otherwise have the opportunity. This can be particularly important when it comes to support systems and is one of the more often reported needs of ICD recipients and their caregivers. The authors thank Sandra Gilmour, RN, BSN, and Michael Turok, RN, BSN, for contributions to this mentored research project; and Yvonne Michel PhD, Associate Professor, College of Nursing, for assistance in data analysis.
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considerations for research and clinical care. Clin Cardiol 2003;26:107-11. Sneed NV, Finch NJ. Experiences of patients and significant others with automatic implantable cardioverter defibrillators after discharge from the hospital. Prog Cardiovasc Nurs 1992;7:20-4. DeBasio N, Rodenhausen N. The group experience: meeting the psychological needs of patients with ventricular tachycardia. Heart Lung 1984;13:597-602. Badger JM, Morris PL. Observations of a support group for automatic implantable cardioverter-defibrillator recipients and their spouses. Heart Lung 1989;18:238-43. Molchany CA, Peterson KA. The psychosocial effects of support group intervention on AICD recipients and their significant others. Prog Cardiovasc Nurs 1994;9:23-9. Sneed NV, Finch NJ, Michel Y. The effect of psychosocial nursing intervention on the mood state of patients with implantable cardioverter defibrillators and their caregivers. Prog Cardiovasc Nurs 1997;12:4-14. Dickerson SS, Posluszny M, Kennedy MC. Help seeking in a support group for recipients of implantable cardioverter defibrillators and their support persons. Heart Lung 2000;29: 87-96. Dickerson SS, Wu Y, Kennedy MC. A CNS-facilitated ICD support group. A clinical project evaluation. Clin Nurse Spec 2006;20:146-53. Dickerson SS, Flaig DM, Kennedy MC. Therapeutic connection: help seeking on the Internet for persons with implantable cardioverter defibrillators. Heart Lung 2000; 29:248-55. Brennan PF. The future of clinical communication in an electronic environment. Holist Nurs Pract 1996;11:97-104. Fleitas J. Spinning tales from the World Wide Web: qualitative research in an electronic environment. Qual Health Res 1998; 8:283-92. Newburger E. Home computers and Internet use in the United States: August 2000; 2001. Available at: http://www.census. gov/prod/2001pubs/p23-207.pdf. Accessed March 2007. Spooner T. Internet use by region in the United States; 2003. Available at: http://www.pewinternet.org/reports/pdfs/PIP_ Regional_Report_Aug_2003.pdf. Accessed March 2007. Han HR, Belcher AE. Computer-mediated support group use among parents of children with cancer—an exploratory study. Comput Nurs 2001;19:27-33. White M, Dorman SM. Receiving social support online: implications for health education. Health Educ Res 2001;16:693-707. Winzelberg AJ, Classen C, Alpers GW, et al. Evaluation of an Internet support group for women with primary breast cancer. Cancer 2003;97:1164-73. Green BB, Cook AJ, Ralston JD, et al. Effectiveness of home blood pressure monitoring, Web communication, and pharmacist care on hypertension control: A randomized controlled trial. JAMA 2008;299:2857-67. Nguyen HQ, Donesky-Cuenco D, Wolpin S, et al. Randomized controlled trial of an Internet-based versus face-to-face dyspnea self-management program for patients with chronic obstructive pulmonary disease: pilot study. J Med Internet Res 2008;16:e9. van Bastelaar KM, Pouwer F, Cuijpers P, et al. Web-based cognitive behavioral therapy (W-CBT) for diabetes patients with co-morbid depression: design of a randomised controlled trial. BMC Psychiatry 2008;8:9. Van Straten A, Cuijpers P, Smits N. Effectiveness of a webbased self-help intervention for symptoms of depression, anxiety, and stress: randomized controlled trial. J Med Internet Res 2008;10:e7. Pereira J, Brueera E, Macmillian K. Kavanagh, S. Palliative cancer patients and their families on the Internet: motivation and impact. J Palliat Care 2000;16:13-9. Waldon VR, Lavitt M, Kelley D. The nature and prevention of harm in technology-mediated self-help settings: Three
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29. 30.
31. 32.
exemplars. In: Finn J, Holden G, editors. Human services online: a new arena for service delivery. Binghamton, NY: The Haworth Press, Inc.; 2000. p. 267-93. Byron K. Carrying too heavy a load? The communication and miscommunication of emotion by email. Acad Manage Rev 2008;33:309-27. Owens DA, Neale MA, Sutton RI. Technologies of status management: Status dynamics in email communications. In: Neale MA, Mannix EA, Griffith TL, editors. Research on groups and teams. Volume 3: Technology. Greenwich, CT: JAI Press; 2000. p. 205-30. Daft RL, Lengal RH. Organizational information requirements, media richness and structural design. Manage Sci 1986;32: 554-71. Afrin LB, Greenland WJ, Finch NJ. Improved patient support through support group webcasting: a feasibility assessment.
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Serber et al Proceedings of the 38th Annual Hawaii International Conference on System Sciences (HICSS)–Track 6. 2005;6:138b. Available at: http://doi.ieeecomputersociety.org/10.1109/HICSS. 2005.309. http://www2.computer.org/plugins/dl/pdf/proceed ings/hicss/2005/2268/06/22680138b.pdf?template=1&login State=1&userData=anonymous-IP%253A%253A127.0.0.1 Accessed May 26, 2009. 33. LoBiondo-Wood G, Haber J. Nursing research methods. Critical appraisal and utilization. 5th ed. St. Louis: Mosby, Inc.; 2002. 34. Heller SS, Ormont MA, Lidagoster L, et al. Psychosocial outcome after ICD implantation: a current perspective. Pacing Clin Electrophysiol 1998;21:1207-15. 35. Festinger L. A theory of cognitive dissonance. Stanford, CA: Stanford University Press; 1957.
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Using a webcast support service: Experiences of in-person attendees of an implantable cardioverter defibrillator support group Eva R. Serber, PhD,a Nancy J. Finch, RN, PhD,b Lawrence B. Afrin, MD,c and W. James Greenland, BSd
OBJECTIVE: Most patients with implantable cardioverter defibrillators (ICDs) adjust well to living with the device; however, some experience difficulties. Support groups assist in coping with the psychologic effects of living with an ICD. The study’s aim was to examine acceptability of the in-person attendees of an ICD support group that was cast on the Internet. SAMPLE: A patient satisfaction survey describing the participants’ experience was used as a measure of acceptability in this non-experimental, survey, pilot study. METHODS: The survey assessed reactions of the in-person participants with ICDs (N = 46) to the introduction of webcasting and remote participation by other individuals with ICDs. Descriptive statistics were conducted. RESULTS: Participating in a webcasted support group was viewed as highly favorable, and responses indicated high satisfaction. CONCLUSION: Participants were satisfied with the webcast technology, enabling broader access to patients. Research is needed to assess the acceptability and satisfaction among remote participants and the group’s effectiveness on clinical outcomes. (Heart LungÒ 2010;39:94–104.)
T
he implantable cardioverter defibrillator (ICD) has become the dominant therapeutic modality for patients with or at high-risk for lifethreatening ventricular arrhythmias.1-4 Although most ICD recipients adjust well to living with the device, as little as 10% and up to as much as 46% experience symptoms or diagnosable conditions of anxiety and depression from 1 to 5 years post-ICD From the aCenters for Behavioral and Preventative Medicine, The Miriam Hospital and The Warren Alpert Medical School of Brown University, Providence, Rhode Island; bTransplant Center and the College of Nursing, Medical University of South Carolina, Charleston, South Carolina; cDivision of Hematology/Oncology, Medical University of South Carolina, Charleston, South Carolina; dHollings Cancer Center, Medical University of South Carolina, Charleston, South Carolina. Funding for this project was provided by the US Department of Defense (Grant N000149611298, PI: Afrin), the US Department of Energy (Grant DE-FG02-01ER63121, PI: Afrin), and Medtronic Inc. Reprint requests: Eva R. Serber, PhD, CBPM, CORO Building, Suite 500, One Hoppin Street, Providence, RI 02903. E-mail: [email protected] 0147-9563/$ – see front matter Ó 2010 Elsevier Inc. All rights reserved. doi:10.1016/j.hrtlng.2009.06.003
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implantation.5-7 The psychologic changes associated with life-threatening arrhythmias and ICD therapies affect not only physical and mental health but also social and role functioning.8
SUPPORT GROUPS Support groups have been described to reduce stress and enhance adjustment, and to meet the educational and emotional needs of patients with ventricular tachycardia, providing a forum in which patients can share problems, fears, concerns, and questions with their peers.9-11 Qualitative reports from patients and their spouses after participating in an ICD support group indicated an improved ability to cope, a positive adjustment to the device, an increased satisfaction with life, and a connection with other ICD recipients.10-13 Support groups are often led or facilitated by trained healthcare professionals. The facilitator can provide information about medical conditions, answer technical questions, and correct incorrect information. The facilitator also fosters individual
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participation, group cohesion, empowerment, and hope, and maintains topic relevance and provides further resources if needed.14 Specific to patients with ICDs, facilitators are valuable for working through the fear of potential sudden cardiac death by encouraging participants to share stories and gain a positive attitude.13 Dickerson and colleagues14 found that using a clinical nurse specialist as facilitator of an ICD support group was essential. The clinical nurse specialist facilitator initiated group process, guided group discussions, used therapeutic communication, provided education, counseled, and made referrals for patients that needed help.14 The role of the professional facilitator was a key component in face-to-face support groups. However, computer-mediated support forums often do not have a trained facilitator.15
INTERNET SUPPORT Many patients who might benefit from support group meetings face significant challenges in attending, such as physical mobility issues, travel conflicts, or time constraints. Electronic communications via the Internet provide wide access to support that is exempt from space, time, and age barriers.16,17 The increase in home computer ownership18 and the popularization of the Internet19 provide novel access to support groups for interested patients. Live chat rooms (and related instant messaging technologies), group emailing (‘‘listservs’’), and Web-based bulletin boards are feasible for this purpose.20-22 These approaches have been efficacious in medical symptom monitoring23,24 and programs for psychologic symptom monitoring and treatment.25,26 However, few formal efficacy assessments have been made of these purely text- or messaging-based methods,20-22 and no formal, comparative assessments to support group meetings (let alone a live support group on the Web) have been reported. Little is known about the experience of seeking support through Internet communications or whether discussion through a medium that lacks affective face-to-face nonverbal cues is helpful.20-22 It is assumed that with the benefit of in-person support groups, ‘‘online’’ mediums would provide a logical extension of this support. In a strictly observational study, Dickerson and colleagues15 described helpseeking experiences by observing discussions posted on an informal public electronic bulletin board for persons with ICDs. After studying hundreds of interactions (469 postings by 75 users over 15 months), they suggested that patients with ICDs experienced a therapeutic connection similar to forming a therapeutic friendship as described by participants in a face-to-face support group.13 The researchers15 con-
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cluded that persons with ICDs were proactive in using Internet bulletin boards to seek practical information and support in coping and adjusting to the ICD. Individuals gain benefit from computer-mediated support modalities; however, some limitations exist when modalities are not monitored or facilitated. The absence of a healthcare facilitator may increase the potential for unreliable posted information.15 Control in the group may not exist, allowing for 1 or 2 members to monopolize the discussion, preventing others to share, or moving the discussion away from topics beneficial and directly relevant to the specific concerns of the group. Finally, an unmonitored group does not have someone trained in recognizing or containing problems that warrant clinical attention (medical or psychologic). This has been seen in a cancer online support group.27,28 Internet communication also has a risk for miscommunication. A large proportion of communication occurs nonverbally, through auditory and visual cues. This is particularly true for emotions. For example, email communication has been associated with miscommunication, attributed to the lack of cues available to both the sender and the receiver of the communication.29 Face-to-face communication provides cues nonverbally (eg, facial expression, voice intonation) and through paralanguage and social context.30 Daft and Lengel31 recommended that for computer-mediated communication, messages should be ‘‘very simple’’ and not used for messages that are ‘‘ambiguous, emphatic, or emotional’’ (p. 57). Provided only written communication, usually seen in Internet communication, messages may lack clarity of content, clarity of emotion, and intensity of emotion in both expression and perception.29 Given communication theory, it is reasonable to hypothesize that because of the lack of auditory and visual interaction in Internet forums, the text-only discussions of emotional issues, although beneficial, may not be as advantageous to the participants as face-to-face support group discussions.20,21 The advantages of Internet discussion as a mechanism of support, particularly with ICD recipients, have not been thoroughly examined. In addition, a nurse-facilitated support group cast on the Internet that has both auditory and visual interaction could be thought to provide greater benefit to participants. This pilot study of acceptability was the first step in examining online and interactive nurse-facilitated support groups.
Statement of purpose The ability to use Internet communication as a support link to persons with similar experiences transcends traditional care and benefits those who
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participate. Additional research is needed to further understand Internet communications and Webbased support groups, and their usefulness as support intervention for ICD recipients. The primary aims of the larger project were to examine the feasibility and acceptability of a live support group cast on the Internet. The results of the feasibility of technologic design, methods, and materials have been reported (http://doi.ieeecomputersociety.org/10. 1109/HICSS.2005.309).32 In the current article, acceptability data for the in-person support group participants are presented.
MATERIALS AND METHODS Sample The current sample was one of convenience, including the individuals who attended the in-person support group. This ongoing ICD support group was used for the webcast. The sample included ICD recipients (n = 29) and caregivers (n = 17). This sample does not include remote participants. Institutional support groups were solicited via email to participants in the initial feasibility testing. The ICD Support Group, moderated by NJF, was selected after participants were consulted and gave informed consent. The ICD support group was initiated 13 years ago at an academic medical center. The group met monthly with 5 to 10 participants attending. Sessions were guided by a nurse facilitator and structured to provide education (guest speakers) and support to those in attendance.
Setting, equipment, and security A prototype of a confidential Web-based method for remote participants to attend in-person support group meetings was developed (Fig 1). The Support Group Webcasting Service (SGWS) is a method that allows remote participants to ‘‘attend’’ live, inperson support group meetings, receiving an auditory and visual experience and actively contributing their own thoughts and comments to the group’s discussion in real-time. However, remote participants’ contributions were monitored by the nurse facilitator who served as the conduit to the group. In-depth information regarding the setting, equipment, and security are provided in the initial article.32 In brief, in-person participants continued to attend the support group as they had in the past; however, now the room was equipped with a microphone in the middle of the room, and the facilitator used a laptop and Web-camera with a microphone to connect the remote participants to the in-person group members (Fig 2). Confidentiality was of utmost
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importance, with participants addressing each other by first name only, and they were not seen by the remote participants. The remote participants needed only an Internet-connected computer, Windows Media Player (Microsoft Corp, Redmond, WA), and their secured access codes. They engaged in the group by typing comments to the facilitator, listening to the discussion, and watching the facilitator only (Fig 3). Remote participants also reaffirmed a confidentiality agreement at each log-in with secured access and firewall.
Procedure This was a non-experimental, survey, pilot study conducted to examine the reactions of an established in-person ICD support group to the introduction of webcasting and remote participation by post-ICD individuals and family members. Approval for this study was obtained from the Medical University Institutional Review Board. After development of the SGWS technology was completed, institutional support groups were solicited to participate in the initial testing phase. As mentioned, the ICD Support Group was selected for the initial feasibility and acceptability study after participants were consulted and gave informed consent (November). Phase I. The December meeting was used to test the ‘‘technology’’ during an internally webcasted meeting. This meeting was an opportunity to acquaint the in-person participants and the facilitator (NJF) of the support group with the hardware set-up (laptop computer, golf ball-sized camera, and microphone) and test the remaining software components. Phase II. During the January meeting, 1 ICD recipient volunteer came to the Telemedicine Lab and participated as a remote member of the group. Webcast developers (LBA, WJG) directly observed the participant accessing the SGWS. He seemed to have no difficulty independently logging in to the service, selecting the correct group, viewing and hearing the meeting, and participating using the on-screen text input box to submit comments and questions to the group through the facilitator (Fig 4). Phase III. During the February meeting, the same ICD recipient was directly observed from his home computer, where he had no difficulty participating in the meeting remotely using broadband Internet access (no extra technology required). Phase IV. A letter about the SGWS was sent to patients on the ICD support group mailing list. The letter directed those interested to a Web page to view a test video. The video provided a passphrase that
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Webcast support service
Fig 1 Schematic of SGWS (not to scale). This is a pictorial overview of the webcast setup. Figure printed with permission (Ó 2005 IEEE).32
viewers were asked to email to the webcast director to verify they had the computer/Web skills necessary to use the SGWS. Four verification responses were received (2 in the local metro area and 2 > 100 miles from the medical center). Prospective participants were registered and received password-protected access to SGWS after signing an agreement on password protection and confidentiality. Security arrangements ensured only authorized members could access or ‘‘tune in’’ to the webcast meetings. Confidentiality of the members attending in-person sessions was preserved. Phase V. During the March meeting, the 4 registered participants ‘‘tuned in’’ via webcast and joined the live in-person support group session. The Web participants were contacted by phone soon afterward and reported positive satisfactory experiences (access to webcast support group session). The in-person ICD support group had expanded across the state. Phase VI. A description of the SGWS was posted on 2 Web-based message boards for ICD recipients. Fifteen verification responses were received from ICD recipients throughout the United States, Europe, and Australia. They were registered and received authorization to access the SGWS. Phase VII. During the April meeting, the inperson ICD support group was online via the World Wide Web. Remote participants actively attended
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Fig 2 Webcasting equipment. This was the equipment used by the facilitator to cast the ICD Support Group on the World Wide Web (laptop computer and Web-camera with built in microphone). Figure printed with permission (Ó 2005 IEEE).32
the meeting where they successfully submitted comments and questions to the facilitator. Most of these patients reported they had long wanted to participate in an ICD support group, but their remote locales prevented convenient access to such groups. Six in-person participants attended the session and openly engaged in the group experience. Group interaction occurred among all participants, including the guest speaker and facilitator. The in-person
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Fig 3 Remote participants’ online screen. Remote participants would see the ICD Support Group facilitator and be able to type comments to the facilitator. Figure printed with permission (Ó 2005 IEEE).32
ICD support group had expanded across the United States and the globe. During the May to November meetings, local, national, and international participation was noted. Four to 8 remote participants signed on for each session. Group interaction was noted among in-person and remote participants and seemed to be successful.
and (2) describe his/her willingness to recommend a session like this one to other ICD recipients. Participants attending the support group inperson completed the survey at the conclusion of each support group session, with a return rate of 100%. Data were collected for 8 consecutive months (April to November).
Measure: Participant satisfaction survey
Data analysis plan
A self-report questionnaire was developed to measure satisfaction (ie, acceptability) of those participants attending in-person to the ICD support group (ie, not the remote participants). It was their support group sessions that were transmitted over the Internet (SGWS). Satisfaction was assessed with eight 5-point Likert-style questions with anchors varying contingent on what the item was measuring (eg, very uncomfortable–very comfortable). The response choices were for comfort, helpfulness, effect, willingness, and satisfaction. By using a 1% to 100% rating scale, the response choices were valued as 1, 25, 50, 75, and 100. Subjects were asked to mark anywhere on the scale that best represented how they felt. Two open-ended questions were also included to elicit descriptive comments: (1) describe his/her willingness to participate in another session like this one
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First, descriptive analyses (eg, means, standard deviations, percentages) were computed for the individual closed-ended items on the questionnaire (SPSS; version 14.0, SPSS Inc, Chicago, IL). Second, descriptive responses of the 2 open-ended items were transcribed and summarized. Data were examined using content analysis and categorized accordingly.33
RESULTS Participant characteristics Forty-six participants (63% ICD recipients, 37% family/friend caregiver) completed the satisfaction survey (44% were male). All were Caucasian except for 1 African-American. Although exact age was not collected, the majority were 61 years and older (81%). Demographic characteristics of the total
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Fig 4 On-screen text input box. Screen displays textual comments submitted from remote participants to the group via the facilitator during a live support group meeting. Figure printed with permission (Ó 2005 IEEE).32
sample, and broken down by patient and caregiver, are provided in Table I. Of significance, caregivers were more often women compared with the patients (F = 22.26 [1, 41], P < .001).
Item responses There were no significant differences in responses between the ICD recipients and the caregivers (P = .369); therefore, data were combined. Those attending the in-person ICD webcasting support group sessions found the experience to be particularly positive. There were no statistical differences by role in any response category. The individual items and percentage rates are presented in Table II. The majority of respondents reported being ‘‘somewhat’’ to ‘‘very comfortable’’ with the session being transmitted over the Internet to remote participants (86.7%). More than 83% of respondents rated that the contributions from the remote participants were not only helpful to them as individuals but also to the group as a whole. Almost all of the respondents (91.3%) reported that the session’s Internet transmission had ‘‘minor’’ to no effect on what they said or did not say in the group interaction. ‘‘Minor effect’’ was defined as ‘‘occasionally I decided not to say something or I rephrased something I was going to say.’’ Also rating favorably, 93% of respondents stated that they would be willing to participate in another webcasted session, and 98% were willing to recom-
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mend a webcast session to other ICD recipients. One participant indicated that s/he thought there should be a limit on the number of group members participating remotely, as stated ‘‘only if it interfered with the quality of the session.’’ Most important, 91% of respondents reported an overall ‘‘satisfaction’’ with the experience of participating in the ICD SGWS.
Descriptive themes Predominant themes that were identified from the experience of those participants who attended a webcasted support group session were gaining information, having interaction, benefiting others, accessibility, and gaining support and education. Sample comments for each theme are presented in Table III. Gaining information and interaction. The participants described the webcasted sessions as informative and interactive. The webcasted sessions were a way of acquiring information from professional experts. The webcasted sessions also provided a setting for discussion and interaction among peers. Benefiting others and accessibility. The participate thought that the webcasted sessions could be helpful to others and were willing to participate in future sessions transmitted over the Internet. Themes related to accessibility and uses of the Internet were related to the Internet as a tool for information and reaching a broader audience.
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Table I Demographic characteristics from ICD post-support group survey respondents: In-person participants Respondent Variable
Respondent ICD patient Family/friend Gender Male Female Race Caucasian African-American N/R Age (y) <40 41-50 51-60 61-70 71-80 >80
ICD patient n
29 n/a
Caregiver (family/friend)
%
100 n/a
n
n/a 17
18 11
62.1 37.9
2 15
27 1 1
93.1 3.4 3.4
17 0 0
0 4 2 6 8 9
0 13.8 6.9 20.7 27.6 31.0
3 0 0 2 9 3
Total sample (N = 46)
%
n
%
n/a 100
29 17
63.0 37.0
20 26
43.5 56.5
44 1 1
97.8 2.2 2.2
3 4 2 8 17 12
6.5 8.7 4.3 17.4 37.0 26.1
11.8 88.2 100 0 0 17.6 0 0 11.8 52.9 17.6
ICD = implantable cardioverter defibrillator; n/a = not available; N/R = not reported.
Gaining support and education. The webcasted sessions offered support and education to group members, as well as mutual benefit from other remote participants.
DISCUSSION There is growing literature examining online modalities for education, support, and treatment among patients with acute and chronic conditions; however, to date, this represents the first in-person, nurse-facilitated support group to be broadcasted via the Internet for remote participants to actively engage in the group process. Although the experience of the remote users is of great interest and importance, the current analysis examined the acceptability of this format via the in-person ICD support group participant only. Their experience of their group posted real-time over the World Wide Web and enabling other remote ICD patients and families to participate was assessed by a selfreport survey. Two main findings were that the inperson participants reported high acceptability of the technology and group process, citing high satisfaction and benefit to themselves and the remote
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users. Findings were comparable to Heller and colleagues’34 ICD support group, who rated the group 96% as helpful. The second finding was that the content themes emerging from open-ended questions were similar to previous online focus groups and investigations of Internet bulletin boards illustrating the support link using ‘‘therapeutic connection.’’15 The SGWS provided a forum of support using interactive communication whereby participants shared ‘‘personal perspectives’’ through storytelling. Therefore, it was not only feasible from a technical and logistic standpoint32 but also efficacious in providing a beneficial ‘‘support link’’ to in-person participants who were present and presumed to be for those attending via webcast. The study findings are also consistent with the existing literature regarding use of the Internet as a source of support and overcoming barriers of accessibility, transportation, and location of participants. Other Internet forums, such as bulletin boards, chat rooms, and e-mail listservs, lack auditory and visual interactions.15,20,21 However, this Internet support group overcame such limitations with a live, visual, online support group that allowed
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Table II Ratings from respondents on the ICD post-support group survey Questions
Q1: How comfortable were YOU about the session being transmitted over the Internet to remote participants? Q2: How helpful do you think it was to YOU today that group members located remotely were able to contribute their thoughts to the meeting? Q3: How helpful do you think it was to THE GROUP today that group members located remotely were able to contribute their thoughts to the meeting? Q4: Did today’s session being transmitted over the Internet have any effect on your decisions about what to say or what not to say during the session? Q5: How willing do you think you will be to participate in a session like this again? (session gets transmitted over the Internet to remote participants) Q6: How willing are you to recommend a session like this to other ICD patients or their family members? Q7: Does it matter to you HOW MANY group members are participating remotely? Q8: Overall, based on the session you had today, how satisfied are YOU with ‘‘The MUSC Support Group Webcasting Service’’?
Answer choices
Very uncomfortable Somewhat uncomfortable Neither comfortable nor uncomfortable Somewhat comfortable Very comfortable Very unhelpful Somewhat unhelpful Neither helpful nor unhelpful Somewhat helpful Very helpful Very unhelpful Somewhat unhelpful Neither helpful nor unhelpful Somewhat helpful Very helpful No effect Minor effect Moderate effect Major effect Extreme effect Very unwilling Somewhat unwilling Neither willing nor unwilling Somewhat willing Very willing Very unwilling/unhelpful Somewhat Unwilling/unhelpful Neither willing nor unwilling (neither helpful nor unhelpful) Somewhat willing/helpful very willing/helpful Not at all Mildly Moderately Considerably Extremely Very dissatisfied Somewhat dissatisfied Neither satisfied nor dissatisfied Somewhat satisfied Very satisfied
% Respond
11.1 0 2.2 20.0 66.7 7.1 0 9.6 21.4 61.9 7.0 0.0 9.3 23.2 60.5 47.8 43.5 4.4 4.3 0 2.2 4.4 0 15.6 77.8 0 2.2 0 24.4 73.3 86.7 4.4 6.7 0 2.2 6.5 0 2.2 28.3 63.0
ICD = implantable cardioverter defibrillator; MUSC = Medical University of South Carolina.
interaction with the group facilitator, in-person, and remote participants. The facilitator engaged the remote participants by sharing their questions and comments with the in-person support group. Sampled in-person attendees reported that they were
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not inhibited by remote participants and received the benefit of helping others like themselves. Both in-person and remote ICD participants actively participated in dialogue and supportive interaction, as noted by the support group facilitator.
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Table III Sample comments written by participants divided by themes Theme: Gaining Information and Interaction ‘‘The speaker was excellent.’’ ‘‘I enjoyed the comments and interactions with remote users.’’ Theme: Benefiting Others and Accessibility ‘‘I hope our group can be helpful to others.’’ ‘‘Hopefully, it will improve their life.’’ ‘‘The Internet can be used to reach a broader population.’’
‘‘I enjoyed the information from the speaker.’’ ‘‘The Web-based questions and interactions were helpful.’’
‘‘Sharing our own experiences may help new patients.’’ ‘‘.excellent opportunity for those who were unable to attend.’’ ‘‘The Internet is a great learning tool.’’
Theme: Gaining Support and Education ‘‘The support is part of the healing.’’ ‘‘I enjoyed getting information from around the world.’’
‘‘It makes it more than just a support group.’’ ‘‘Everyone needs more education on ICDs.’’
ICD = implantable cardioverter defibrillator.
Limitations The current study investigated acceptability of an Internet webcast technology using a small sample of in-person attendees. There are 3 significant limitations to the study; however, we think the strengths of the study’s applications outweigh the weaknesses. First, it was a highly, self-selected and small sample of ICD participants who were attending the group inperson, face-to-face. They were long-standing active support group participants who likely already had a high degree of cohesion and satisfaction. They also may be inclined to rate satisfaction because of all the efforts that were put forth to conduct the webcast group.35 Second, and possibly of greatest interest to some, these data do not provide any information on how remote participants would rate satisfaction or acceptability. It is assumed that the experience was at minimum satisfactory, because they continued to log into sessions over time. Third, the limited amount of data collected on these in-person participants leave many questions unanswered. Their past or current psychologic well-being was unknown, and this study did not examine how this webcast support group influenced psychologic well-being, quality of life, or health status of the participants over time. It is important to note that we did not have 100% satisfaction with the webcast group. A small
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proportion did indicate that they were not comfortable or did not find it to be helpful. Some literature suggests our satisfaction rates are comparable to other groups.34 It is also reasonable that despite the high proportion who did rate the experience as comfortable, beneficial, or satisfactory, there will always be some who will not be pleased. Further study is needed to determine sources of discomfort and remedies to resolve areas that were unsatisfactory and to increase participant benefit.
Future research Prospective studies are needed to examine the SGWS experience from a biopsychosocial perspective, collecting data pre-and post-group participation from both in-person and remote attendees. In addition, clinical trials comparing groups of support group webcasts and other online modalities, information-only Websites, and standard care or control groups are needed to understand the efficacy of this approach across the full spectrum of participants.
Clinical implications The Internet is becoming more accessible and affordable to people of all ages, races, ethnicity, and socioeconomic groups. Those with chronic
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illness and physical mobility issues are a prime group of individuals who may benefit from remote access to health education and support. It behooves those in clinical practice to continue finding appropriate ways to use the Internet as a resource, including providing emotional support and healthcare information to patients with cardiac disease. Previous research and the current findings suggest that ICD recipients are amenable to and want Internet communication and support.15
CONCLUSIONS These ICD participants reported satisfaction and utility of their support group cast on the Internet. The strength of this support group was that it was a live, real-time support group that allowed remote participants to attend and included both auditory and visual interactions. More research is needed to determine effectiveness for SGWS in clinics. More clinical practice is needed to determine the effectiveness and applicability of this intervention. There are several possible benefits. For providers, the Internet represents a time-saving mode of simultaneously reaching many individuals. For both patient and provider, the Internet is cost-effective, connecting people with similar needs who may not otherwise have the opportunity. This can be particularly important when it comes to support systems and is one of the more often reported needs of ICD recipients and their caregivers. The authors thank Sandra Gilmour, RN, BSN, and Michael Turok, RN, BSN, for contributions to this mentored research project; and Yvonne Michel PhD, Associate Professor, College of Nursing, for assistance in data analysis.
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