Introduction, Research Questions, and 8-entry Annotated Bibliography

The goal of this paper is to create an APA formatted reference list of eight articles from the knowledge base, a one paragraph summary of each article, and a brief rationale for the selection of each article. An introduction and purpose statement for the proposed study is included as are the research question and a justification of its viability.

Brief Article Summaries
Goodwin, P.J., Leszcz, M., Ennis, M., Koopmans, J., Vincent, L., Guther, H., Drysdale, E.,
Hundleby, M., Chochinov, H. M., Navarro, M., Speca, M., & Hunter, J. (2001).

The primary objective of Goodwin et al., (2001) was to discover whether adding support group participation to the treatment of metastatic breast cancer affected survival. The study also addressed psychological functioning, perceptions of pain, and life quality. (These were the greatest benefit to breast cancer patients. This longitudinal study recruited 237 metastatic breast cancer patients (women) over a five year period. Survival for the intervention group was 17.9 months and 17.6 months in the control group.

Rationale for Selection

There is a paucity of research on the survival benefit of support group participation. This study is valuable to my research even though the findings did not provide evidence that support group participation affects survival. It did, however, provide suggestions for future research, and variations that might be provocative toward generating similar data for online support groups as an addition to cancer treatment. Further, there was significant evidence of psychosocial benefits for this group of women. Although I am not planning to focus on this research question in my dissertation, at some point, it seems important to determine whether online support group participation provides the same benefit to both genders and individuals from diverse populations, or if online support benefits one population more than another. Goodwin et al., (2001) makes several beneficial suggestions for future research.

Huber, J., Ihrig, A., Peters, T., Huber, C., Kessler, A., Hadaschik, B., & ... Hohenfellner, M. (2011). Decision-making in localized prostate cancer: lessons learned from an online support group. British Journal of Urology International, 107(10), 1570-1575. doi:10.1111/j.1464- 410X.2010.09859.x
Huber et al. (2011) sought to add to the understanding of the dynamics and the content of peer-to-peer influences on decision making derived from online support. To accomplish this, the authors explored communication between prostate cancer patients and how this peer-to-peer counseling affected decision-making. The authors investigated 501 threads in the online community related to information seeking as it pertained to decision making. Huber et al. found patients in the online forum openly engaged in and benefitted from information exchange and advice, and benefitted from social and emotional support as well. Additionally, Huber et al. found online peer-to-peer interaction can provide the same support as traditional face-to-face support groups, and the online forums provided an ease of use in that direct personal contact was circumvented. Finally, these authors suggest the scientific evaluation of online support groups contributes to health care providers' understanding of their patients needs.

Rationale for Selection

This article is pertinent to my study because it identifies the inherent value in virtual peer-to-peer counseling in online support groups that cater to patients with a specific cancer type. This information exchange is not only beneficial to the patients, but healthcare providers as well. One of my research questions asks whether this benefit is significant for cancer patients that utilize virtual support groups specific to their disease. Huber et al. (2011) found virtual support for prostate cancer patients was as beneficial in providing emotional support as face-to-face support groups. Although the sample was comprised solely of men, the findings likely apply to samples independent of gender.

Juneau, J. M., & Remolino, L. (2000). Online support groups: Nuts and bolts, benefits, limitations and future directions. (pp. 1-6, Rep. No. ED446330). Greensboro, NC: ERIC Clearinghouse on Counseling and Student Services. (ERIC Document Reproduction Service No. EDO-CG-00-7).

Because online support groups have become a viable alternative to traditional face-to-face groups, Juneau and Remolino (2000) discussed the rudimentary facets of virtual support groups and identify benefits, limitations, and how these groups may become beneficial in the future. This ERIC report is important to my research as it provides foundational descriptions and established benefits and shortcomings of virtual support groups in general. There are no key results for this information analysis, however, the fundamental issues of online support groups need to be clarified in my study and this document will support that effort.

Owen, Boxley, Goldstein, Lee, Breen, & Rowland (2010)

The purpose of this study was to identify the increasing number of participants in online support group and to determine which characteristics incline individuals to utilize online support groups and face-to-face support groups. The authors polled 6,795 people with chronic conditions and found a limited number of individuals using online support groups, although suggested that internet based information sources have the potential to reach a greater number of individuals than do face-to-face groups. These authors discussed empirical evidence that supports face-to-face support, calling attention to the paucity of research on the effectiveness and experiences of participants in online support groups.

Rationale for Selection

This study is important because it identified the potential of online support groups. It is a seminal exploration into the utilization of online support, which is an important facet of determining the benefits of this type of group support. Further, Owen et al.'s (2010) findings on user demographics may be an important comparison to my research. Owen et al. found that 54% of online support group users never participated in face-to-face groups, and they are younger, educated and more likely to utilize complementary and alternative medicine. Furthermore, most users are White or Asian-American.

Seckin, G. (2009).

Seckin (2009) explored whether and how strongly cancer patients believed their participation in an online cancer support group affected their ability to cope with their disease, especially when the disease is life threatening, and to what extent the benefits of online support groups are associated with how often and how long individuals participate. Seckin posted announcements on 31 internet support groups from which 375 questionnaires were received from cancer patients . Although Seckin found participants were helped by the supportive communication, it did not provide sufficient information on alternative treatments. Seckin's participants appraised their participation as helpful, instilled optimism and a sense of control, increased knowledge about their disease, and finding meaning in coping.

Rationale for Selection

This study was included because it found cancer patients perceive their involvement in online support groups as a benefit to their outcomes, at least as they apply with ability to cope. My research focuses on the perceived benefits of disease specific online support groups, so this research supports my assumption that, in general, online support groups are helpful, and the specificity of disease specific groups has implications for additional benefit. Although Seckin (2009) found online support groups deficient in the sharing of treatment variations, I anticipate findings may be different for disease-specific groups.

Sen, N. (2008).

Sen (2008) explored online support group participation and the degree to which participation was influenced by disease severity, perceptions of support networks, and the participants degree of extroversion. Sen enlisted 178 cancer patients and had them respond to a few questions and implemented a scale for extroversion, and one to determine perceived support networks. Sen found that cancer patients who participate in online support groups believe it fills a significant resource for emotional support as well as an information resource.

Rationale for Selection

Sen (2008) supports my contention that online support groups are a significant source of emotional support as well as disease-related information. Furthermore, this study found that across a variety of support networks and personality traits, cancer patients find significant support in online groups. Sen made a final recommendation that oncologists recommend online support groups to their patients, which is one of the goals of my research. Only eight out of Sen's 178 participants said their oncologists recommended the online support group. I hope to influence that number.

Shim, M., Cappella, J. N., & Han, J. (2011).

Shim et al., (2011) examined the effects of women (breast cancer patients) sharing insights and emotions through communicating in online support groups. These authors found that one benefit of support groups is the shared experience of communication and processing, which helps patients adapt and adjust to the trauma of a cancer diagnosis and subsequently provides patients with potential health benefits, such as improving patients' well-being (Shim et al., 2011). Further, these authors found that sharing insights online promoted self-efficacy, emotional well-being. Sharing negative emotions, however had no significant effect on health outcomes. This study explored the effects of support in 231 women.

Rationale for Selection
Shim et al.(2011) supports the idea that communication in online support groups has significant benefits, specifically in the process of the written communication necessary in this type of support network. These findings are supportive in my research because they describe an effect of group support (written communication) exclusive to online participation.

Tehrani, Farajzadegan, Rajabi, & Zamani, 2011

This study evaluated the effects of peer support and educational programs on quality of life in women with breast cancer. This study included 68 breast cancer patients. Findings suggest support groups are successful in providing cancer patients and caregivers with information, psychological support, a sense of camaraderie, and insight from others with similar experiences (Tehrani et al., 2011). Furthermore, the support groups enhanced quality of life for the cancer patients.

Rationale for Selection

This study provides fundamental support and justification for inquiry into online support groups as a means of social support for cancer patients. Further, this study suggests that social support enhances quality of life. It justifies asking whether online support would provide the same sense of social support and the subsequent benefits of face-to-face support groups.

Introduction to Study

Online communication and social networking have a prominent place in daily life for many individuals. As a result of this prominence, online support groups have established themselves as viable means of positively affecting mood, palliating pain, and increasing the quality of life for cancer patients (Goodwin et al., 2001; Juneau & Remolino, 2000). Online groups, like face-to-face support groups, provide cancer patients with psychological support, a sense of camaraderie and control over disease, and insight gained from others in similar circumstances (Tehrani et al., 2011). There is, however, a paucity of research that explores the perceived benefits of cancer patients' participation in disease-specific online support groups for patients with rare cancer types, and little is known on the effectiveness of online support groups in general (Owen et al., 2010). Although the benefits of online support have been documented for cancer patients, individuals with rare cancer types have challenges exclusive to their disease. For example, specialists for rare cancers such as multiple myeloma may not be available locally, and exchanging information with patients who have access to specialists may be an effective means of educating oneself about the disease and treatment options (Huber et al., 2011). When exploring information exchange in general online support groups, Seckin (2009) found participants were helped by the supportive communication, although it did not provide sufficient information on alternative treatments. Considering the ideosyncratic information communicated in disease-specific support groups, these findings may prove inaccurate.

Huber et al. (2011) found online peer-to-peer interaction provides the same social support as face-to-face support groups, and the online forums eliminated the constraints of being held at a particular time and location. Seckin (2009) found when cancer patients strongly believed in the value of their participation in an online cancer support group, it helped them to cope with their diagnoses, especially when the disease was classified as a terminal illness. Seckin's participants believed their participation in online support groups helped them remain optimistic, maintain a sense of control, and increased their knowledge about their disease. Additionally, the shared experience of communication and processing disease-related stress helps cancer patients adapt and adjust to their disease (Seckin, 2009). Sharing insights and emotions through online communication improves psychological well-being (Shim et al., 2011). Sen (2008) found online support group participants believe it is a significant resource for emotional support and information. Juneau and Remolino (2000) described the benefits and limitations of online support groups, although these highly generalized characterizations may not necessarily apply to online disease-specific support groups.

Huber et al., (2011) suggested the scientific evaluation of online support groups is essential because it contributes to increasing health care providers' understanding of their patients' needs. By exploring the perceived benefits of cancer patients and their experiences of disease-specific online cancer support group participation, the psychological sciences gain an increased understanding of the effects of online support during illness and disease. Furthermore, it may encourage oncologists to recommend participation in disease-specific online support groups to their patients. If cancer patients benefit from such participation, oncologists have gained a new capacity to increase positive outcomes for their patients.

Purpose Statement

The purpose of this study is to explore the perceived benefits of disease specific online support groups for patients with rare cancer types. To address the paucity of research on this type of online social support, this study surveys the experiences of 150 cancer patients diagnosed with one of three rare cancers. The 150 participants in this study are members of an Association of Cancer Online Resources online support group specific to their disease. In this study, the subjective experiences and opinions of support group participants are examined. Through an extensive survey, the goal of this study is to increase the understanding of patients' experiences in their online support group. Although social support during illness and disease is well-established in its ability to palliate pain and suffering and support positive outcomes, there is a deficiency of empirically derived research on disease specific online support groups for rare cancer types. The goal is to clarify benefits perceived by cancer patients that are exclusive to disease-specific online support groups. This qualitative study was designed to explore patient experiences in the online environment and their perception of the benefits of their online support communities.

Research Question

The research question for this proposed qualitative study is ‘what do participants of disease-specific online support groups perceive as the benefits of their participation in their online community?’ Exploring these benefits may be of value to cancer patients, especially those with rare cancer types. In addition, understanding patients' needs places oncologists in a position to provide direction toward effective emotional support and the opportunity to increase disease-related knowledge.


References

Goodwin, P.J., Leszcz, M., Ennis, M., Koopmans, J., Vincent, L., Guther, H., Drysdale, E.,

Hundleby, M., Chochinov, H. M., Navarro, M., Speca, M., & Hunter, J. (2001). The

effect of group psychosocial support on survival in metastatic breast cancer. New England Journal of Medicine, 345 , 1719–26

Huber, J., Ihrig, A., Peters, T., Huber, C., Kessler, A., Hadaschik, B., & ... Hohenfellner, M. (2011). Decision-making in localized prostate cancer: lessons learned from an online support group. British Journal of Urology International, 107(10), 1570-1575. doi:10.1111/j.1464- 410X.2010.09859.x

Juneau, J. M., & Remolino, L. (2000). Online support groups: Nuts and bolts, benefits, limitations and future directions. (pp. 1-6, Rep. No. ED446330). Greensboro, NC: ERIC Clearinghouse on Counseling and Student Services. (ERIC Document Reproduction Service No. EDO-CG-00-7).

Owen, J., Boxley, L., Goldstein, M., Lee, J., Breen, N., & Rowland, J. (2010). Use of Health- Related Online Support Groups: Population Data from the California Health Interview Survey Complementary and Alternative Medicine Study. Journal Of Computer-Mediated Communication, 15(3), 427-446. Doi: 10.1111/j.1083-6101.2010.01501

Seckin, G. (2009). Medical Conversations in Technology Enabled Communities: Perceived Benefits of Participation in Online Patient Communities. Conference Papers -- American Sociological Association, 1.

Sen, N. (2008). Online Social Support for Cancer Patients: Effects of Stress, Shyness, and Family Support. Conference Papers -- National Communication Association, 1.

Shim, M., Cappella, J. N., & Han, J. (2011). How does insightful and emotional disclosure bring potential health benefits? Study based on online support groups for women with breast cancer. Journal Of Communication, 61(3), 432-454. doi:10.1111/j.1460- 2466.2011.01555.x

Tehrani, A., Farajzadegan, Z., Rajabi, F., & Zamani, A. (2011). Belonging to a peer support group enhances the quality of life and adherence rate in patients affected by breast cancer: a non-randomized controlled clinical trial. Journal Of Research In Medical Sciences, 16(5), 658-665.