Online Program

Use of Internet Cancer Support Groups as Research Settings

Tuesday, November 3, 2015

Jingwen Zhang, M.A., Annenberg School for Communication, University of Pennsylvania, Philadelphia, PA
Sangmi Kim, MPH, RN, PhD(c), School of Nursing, University of Pennsylvania, Philadelphia, PA
Yaelim Lee, PhD, MSN, RN, Nursing, Yeouido St. Mary's Hospital, Seoul, Korea, Republic of (South)
Xiaopeng Ji, MSN, RN, Nursing, Univ. of Pennsylvania, Philadelphia, PA
Wonshik Chee, PhD, School of Nursing, University of Pennsylvania, Durham, PA
Jun Mao, MD, MSCE, School of Medicine, Univ. of Pennsylvania, Philadelphia, PA
Hsiu-Min Tsai, PhD, FAAN, Nursing, Chang Gung Univ. of Science and Technology, Tao-yuan,, Taiwan
Masakazu Nishigaki, PhD, RN, PHN, CGC, Human Health Sciences, Kyoto University, Kyoto, PA
Seon Ae Yeo, PhD, FAAN, Nursing, Univ. of North Carolina, Chapel Hill, NC
Eunice Chee, BSE, College of Engineering, Univ. of Pennsylvania, Philadelphia, PA
Eun-Ok Im, PhD CNS MPH RN FAAN, School of Nursing, University of Pennsylvania, Philadelphia, PA
Background. With advances in computer and Internet technologies, Internet cancer support groups (ICSGs) have been widely used by cancer patients during the past decade. Because of their popularity, ICSGs have been frequently chosen as research settings by researchers despite their limitations. With recent changes in Internet environments, there is an increasing need to re-analyze the existing ICSGs as research settings. The purpose of this presentation is to identify potential issues in using ICSGs as research settings to recruit cancer patients, especially breast cancer patients, by systematically analyzing existing ICSGs.

Methods.  ICSGs were searched in a systematic way through Google, Yahoo, Bing, MSN, AOL, ACOR,, and using keywords of cancer, support, and breast cancer.  All the retrieved ICSGs were visited to verify if they are actually ICSGs for breast cancer patients. Then, each ICSG was analyzed according to the evaluation criteria for ICSGs that were suggested by Im et al. 

Results.Four themes emerged from the analysis process. First, 50% of the ICSGs were dormant (no interaction during the past 6 months). Second, 70% of the ICSGs were closed to only their members. Third, in 30% of the ICSGs, the contact information of the moderators/leaders was not clearly posted; rather, a potential participant should submit a request through the Internet, and need to wait until the moderators/leaders respond. Finally, 40% were just for information (no actual Internet interactions among members).

Conclusions. Researchers need to combine ICSGs with real community/clinical settings if they want to use ICSGs as research settings.

Learning Areas:

Communication and informatics
Conduct evaluation related to programs, research, and other areas of practice
Public health or related nursing
Public health or related research

Learning Objectives:
Discuss the benefits and disadvantages in using Internet cancer support groups as research settings. Describe the current status of Internet cancer support groups and formulate directions for future research.

Keyword(s): Cancer, Internet

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the one who has worked on the analysis of the Internet cancer support groups.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.