Who Participates in Online Support Groups for Bariatric Patients?

by Douglas Sutton, EdD, ARNP, NP-C, and Deborah A. Raines, PhD, RN

Introduction
Health-related support groups are an accepted component of care for persons with chronic or life-altering medical conditions. Scheduled face-to-face meetings with either a peer or professional moderator have been the traditional format for these health-related support groups. Regarding the care of the bariatric patient choosing a surgical weight loss intervention (SWLI), support groups have been shown to have a positive impact on the individual’s weight loss and overall wellbeing.

Elakkary et al compared 10 post-SWLI patients who attended a support group and 28 post-SWLI patients who did not attend a support group and found that patients in the support group achieved more weight loss and reported greater life satisfaction.1 However, widespread use of the internet has provided a new technologic alternative to the traditional practice of bringing people together to share information, experiences, and support.

The increased use of the internet by ordinary people is changing the way the general population searches for and retrieves healthcare information. Internet support groups provide a mechanism for participants to communicate without the traditional barriers of time and place. Online forums enable individuals from diverse locations and backgrounds to easily share information, problems, and solutions at the time information or support is needed. The focus of this research was to learn about the individuals who participate in online support groups for bariatric patients post-SWLI. Specifically, this study describes the sociodemographics of the participants and their reasons for and frequency of access to the internet support group.

INTERNET SUPPORT GROUPS
The influence of the internet on how people manage health and illness experiences cannot be ignored. There are more than 1,407,724,920 internet users worldwide and 246,402,574 users in North America representing 74 percent of the total population of North America.3 In the United States, the internet is increasingly becoming a routine part of daily life. The Pew Internet and American Life Project reported a 37-percent increase in daily use during a four-year period, from 52 million in 2000 to 70 million in 2004.3 In 2005, 93 million Americans sought health-related information on the internet, and 36 million joined online support groups.3 Thus, the number of people turning to interactive communities on the internet to find information and support and to connect with others needs to be acknowledged by providers and incorporated into patient care strategies. The internet is without boundaries; therefore, information is readily available.

An online support group allows participants to post messages, read previous messages, and respond from the security of their own environment at a convenient time and with the mask of a screen name to protect their identities. Consequently, individuals who may be uncomfortable, unable, or unwilling to attend a traditional face-to-face support group may find the internet support groups an acceptable alternative. Participation in an online support group requires computer access, but participation is not limited by geographic location or schedule limitation. According to recent data, 3 out of 4 American homes have a computer; therefore, the technology is not a barrier and actually may result in making health resources available to individuals who do not have the ability to access more traditional resources.2

LITERATURE REVIEW
The literature about who participates in an online support group is scant. A group of studies have looked at the use of online support groups by cancer patients. Klemm and Hardic compared cancer patients’ participation in a conventional support group (n=14) and an internet support group (n=26).4 They found no difference in the days since diagnosis, income level, or health insurance status, but there was a higher level of depression among internet support group participants.4 In another study with cancer patients, it was found that internet support group participants were more seriously ill than traditional support group participants.5 Aslam investigated internet use by outpatient orthopedic patients and found the mean age of the patients was 63 years and the sex ratio of the respondents was equally distributed between male and female.6 In this sample, over 60 percent of the subjects knew of health-related websites and the most common place to access the internet was from home (68%).6

Salem, Bogat, and Reid studied the users of an online support group for individuals with depression.7 In contrast to the traditional face-to-face support groups—which have greater participation by women, the participation by men and women was equal in the online groups. These researchers suggested that the internet may have provided the men with the anonymity needed for them to interact in mutually therapeutic ways.7 Similarly, van Uden-Kraan et al interviewed 32 participants in an online support group and found participation to be an empowering process for the individual.8

The existing empirical data supports the emergence of online support groups and provides insight into the process and outcomes of internet support groups, but does not provide knowledge about who the participants are and their reason(s) to participate in an online forum. Understanding the sociodemographics of the participants in online groups and reason(s) for choosing an online support group will assist providers in designing post-surgical weight loss support group forums that respond to the needs of the individual patient.

RESEARCH QUESTIONS
The purpose of this study was to describe the participants in an online post-surgical support group for bariatric patients. The specific research questions guiding this investigation were the following:
• What are the sociodemographic characteristics of the online support group participants?
• What is the primary reason for participating in an online support group?
• How often do participants access the online support group?

METHOD
This study was a cross-sectional descriptive study. The study was reviewed and approved by the university Institutional Review Board (IRB) and the moderators of the internet support groups prior to posting.

Using convenience sampling, the members from two internet support groups ([email protected] and [email protected]) were invited to participate. A letter explaining the purpose of the research and inviting participation was posted to the support group message board. All individuals accessing the online support group at the time of data collection were eligible to participate. The letter included a hot link to the online survey on the www.advancedsurvey.com© server. At this secured site, participants anonymously completed the data collection tool. Completing and submitting the online survey was the participants’ consent to participate in the research. All participants were post-surgical bariatric patients, ages 18 years and older, who have the ability to read and write in English.

Data were collected via a web-based survey. The online survey consisted of two parts: a series of demographic items to describe characteristics of respondents and their use of the online support group, and a single item Likert scale measure of quality of life (1=excellent, 5=poor). A power analysis to achieve a power of .95 with a large effect size (.8) and an alpha of 0.05 was calculated and determined that a minimum sample size of 70 respondents was needed to have confidence in the findings.9

The collected data was downloaded from the web-survey site’s ASCII format to an excel spreadsheet. Responses were sequentially numbered to facilitate data management and analysis.

The data file was imported into the Statistical Package for the Social Sciences (12th version: SPSS Inc., Chicago, IL, USA) for the analysis to answer the research questions.

RESULTS
A total of 81 completed data collection tools were submitted. The majority of the respondents were married, white women who attended college and were employed full-time. The sociodemographic characteristics of the participants are summarized in Table 1. Overall 80 percent (n=64) of participants rated their QOL as excellent or very good, and no one rated their QOL as poor. The mean QOL score was 1.7 (SD 0.8) [1=excellent, 5=poor]. There were no differences in self-perceived QOL by any of the demographics of the participants.

Participants in this study were seasoned and regular internet users and accessed the support group frequently. Fifty-nine respondents (72.8%) report daily use of the internet and only six percent of respondents reported only monthly (n=4) or less than monthly (n=1) use of the internet. Seventy-seven percent (n=63) of the participants report using the internet for seven or more years, 17.3 percent (n=14) for 4 to 6 years, and only 5% (n=4) for 2 to 3 years. No one had less than two years experience with the internet. The majority of the participants (n=49, 65%) accessed their online support group daily, 30.9 percent (n=25) accessed the support group weekly, and 8.6 percent (n=7) accessed the site monthly.

The most frequent reason participants identified for accessing the online support group was to obtain information. The next most frequent reasons were time convenience and location convenience. Fifty-nine of the respondents (72.8%) reported that they never attended a face-to-face support group. Fifteen respondents (18.6%) reported attending a face-to-face support group occasionally, and seven respondents (8.6%) reported monthly attendance in a face-to-face group in addition to the online support group.

DISCUSSION AND CONCLUSIONS
The potential benefits for incorporating support group interventions using multiple forums has yet to be adequately studied. Findings from this project highlight several characteristics identified by participants as being beneficial over the traditional face-to-face support group forum. Benefits included 24 hour, seven days per week ability to access information thus eliminating the need for each member of the support group to conform to a set schedule. Persons choosing to participate in an online forum can seek advice by posting questions and reading responses at any time, versus waiting until the next scheduled support group, which may be as many as 3 to 4 weeks away.

Many bariatric surgical clients live a great distance from the actual surgical center and bariatric surgeon’s practice location. Recognizing the importance of participating in a support group following surgery is well documented. Therefore, another potential benefit of an online support group is the ability to overcome geographic obstacles that may interfere with monthly face-to-face participation. Many bariatric surgical centers even require that their patients attend monthly sessions for a prescribed time period following surgery, thus creating barriers to access for individuals who choose to undergo a surgical intervention for morbid obesity.

The widespread use of computers in the home or work setting has decreased the barriers of technology used as a therapeutic tool for support group participants. In addition, the socioeconomic demographics of this sample, as noted in Table 1, indicate that the typical post-surgical bariatric patient has graduated from high school and has attended or graduated from college, are in young or middle adult stages of development, and are fiscally well above the poverty level in the United States. Each of these findings increases the likelihood that the individual has adequate knowledge to utilize the internet as a forum to receive and share information in a structured online support group.

The increased use of online education has been a major trend in most institutions of higher education. As a result, many healthcare professionals have either participated in or have designed web-based courses incorporating the use of technology to facilitate distance education. While this trend has steadily increased over the past decade, it has not trickled down to patient education; however, the pedagogy exists to create forums using online educational platforms such as Blackboard©; WebCT©; and e-College©. Community sites are available to health educators using the web and do not require contractual agreements with institutions of higher learning. Therefore, technologically savvy support group leaders have the ability to design instruction that will meet the objectives of the various components of the support group. For those topics that the support group leader believes are critical to have online dialogue, discussion groups can also be created using one of the educational platforms.
Healthcare providers clearly recognize the need to facilitate and nurture healthy behaviors following bariatric surgery. Realizing the complexities and designing forums that mitigate obstacles for individual support group participation can only serve to enhance the therapeutic relationship between the healthcare professional and the individual as well as improve patient outcomes. As discussed in the van Uden study, the sense of empowerment may have important implications for the post-surgical bariatric population as they experience the life changes associated with their surgical intervention.8

The literature provides few studies on the use of online support group forums, and while the researchers of this study recognize limitations in both the online and traditional face-to-face support group design, we believe it is important that online forums include a structured educational component and not simply serve as a chat room for post-surgical individuals. Discussion boards should be monitored by an assigned healthcare professional that can respond with evidence-based information to avoid anecdotal responses that may prove to be
non-beneficial.

FUTURE RESEARCH
Additional research into the use, content, and design of an online support group is needed. Currently, standards fail to address this form of technology as a viable alternative to the traditional face-to-face group. Studies incorporating both evidence-based practice guidelines and pedagogically appropriate web-based educational platforms are critical at this early stage of development. Evaluating outcomes in both traditional and web-based support groups is necessary to validate this forum as a potential benefit for the individual who has undergone a surgical weight loss intervention, as well as the healthcare professionals who are committed to helping persons achieve long-term success in their journey to overcome the devastating effects of morbid obesity.

References
1. Elakkary E, Elhorr A, Aziz F, Gazayerli MM, et al. Do support groups play a role in weight loss after laparoscopic adjustable gastric banding? Obes Surg. 2006;16(3):331–334.
2. Internet Usage Statistics (2008). Accessed May 20, 2008 at www.internetworldstats.com/stats.htm.
3. Pew Research Center. Internet: The mainstreaming on online life. Accessed March 6, 2006 at http://pewresearch.org/assets/files/trends2005-internet.pdf.
4. Klemm P, Hardie T. Depression in internet and face-to-face cancer support groups: A pilot study. Oncol Nurs Forum. 2002;29(4);E45–E51.
5. Im EO, Chee W. Issues in Internet survey among cancer patients. Cancer Nurs. 2004;27:34–42.
6. Aslam, N. Audit: Internet awareness and use amongst general orthopedic outpatients. J Eval Clin Pract. 2004;10(1):117–119.
7. Salem DA, Bogat GA, Reid C. Mutual help goes on-line. J Community Psychol. 1997;25(2):189–207.
8. van Uden-Kraan CF, Drossaert CH, Taal E, et al. Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qual Health Res. 2008;18(3):405–417.
9. Faul F, Erdfelder E, Lang AG, Buchner A. G*Power 3: A flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Beha Res Methods. 2007;39:175–191.

Category: Original Research, Past Articles