The purpose of the study was to develop a standardized decision support computer program (DSCP) (an expert system) that can be used by nurses as an assessment support tool for dealing effectively with gender and ethnic differences in cancer pain experiences based on cancer patients’ own views and experiences. This study utilized a cross-sectional design with two simultaneous segments: (a) data collection including an Internet survey and online forums; and (b) development of the DSCP. In this paper, only the issues raised in the recruitment process of the Internet survey in the first phase are presented. This study was approved by the Internet Review Board of the University of Texas at Austin.
The Internet survey was conducted among online cancer patients in the U.S. “Being online” meant that the patients were familiar with the Internet as a medium of communication and had regular access to e-mail and the web. To recruit participants for the Internet survey, 317 general (not ethnic specific) Internet Cancer Support Groups (ICSGs), 233 ethnic-specific ICSGs (ICSGs specific for ethnic minorities including African Americans, Asians, and Hispanics), and 2,059 ethnic-specific Internet communities (ICs) (websites for ethnic-specific churches, community centers, cultural centers, profit and non-profit organizations) were contacted through their Web sites/pages, and those who agreed to cooperate were asked to announce the study through the Internet and e-mail system (see & ). These ICSGs were specifically contacted because all members were supposed to be cancer patients. Ethnic-specific ICSGs and ICs were contacted separately from general ICs as recent studies have indicated that ICs including ICSGs usually serve highly educated, more affluent, White males who tend to have easy access to computers and the Internet 16–18
. Thus, in order to reach an adequate number of ethnic minority cancer patients online, it was essential to contact ethnic-specific ICSGs and ICs.
A Summary of Retrieved Websites of Internet Cancer Support Groups (ICSGs)
A Summary of Retrieved Websites of Ethnic-Specific ICs (Internet Communities)
General and ethnic-specific ICSGs were searched using the key words, “cancer,” “support,” and “group,” through five major Internet community/group sites: Yahoo.com, Msn.com, Google.com, AOL.com, and ACOR.org. Through the search process, a total of 918 general ICSGs and 1,968 ethnic-specific ICSGs were retrieved. After retrieving the website addresses, each of the retrieved ICSGs was visited, and their eligibility was determined based on their content (e.g., bulletin boards for cancer patients, chat groups for cancer patients, information resources specific for ethnic minorities). When ICSGs included content related to cancer support, they were regarded as eligible ICSGs. Through this process, 317 general ICSGs and 233 ethnic-specific ICSGs were found to be eligible ICSGs.
Ethnic-specific ICs were also searched using key words of “group,” “community,” “ethnic minority,” “African-American,” “Asian,” and “Hispanic” through three major Internet search engine sites: Yahoo.com, Msn.com, and Google.com. A total of 2,059 ICs were retrieved, and 1,588 ICs (632 for African Americans, 222 for Asians, and 734 for Hispanics) were found to be eligible through the search process. Each of the retrieved ICs was also visited, and their eligibility was determined based on their content (e.g., bulletin boards for ethnic minorities, chat groups for ethnic minorities, information resources specific for ethnic minorities). When ICs included content related to support and/or information for ethnic minorities, they were regarded as eligible ICs.
Among the contacted general ICSGs, only 33 general ICSGs posted the announcement with a fee or without a fee. Among the contacted ethnic-specific ICSGs, 14 ethnic-specific ICSGs agreed to announce the study, yet only 5 posted the announcement with a fee or without a fee. Among the contacted ethnic-specific ICs, only 13 agreed to announce and post the study announcement.
The Internet survey (a total of 126 items) included self-administered questions on sociodemographic characteristics (8 items), ethnic identity (10 items), and disease status (8 items), Verbal Descriptor Scale (1 item), Visual Analog Scale (1 item), Wong-Baker Faces Pain Scale (1 item), McGill Pain Questionnaire-Short Form (17 items), Brief Pain Inventory (15 items), Memorial Symptom Assessment scale (32 items), and Functional Assessment of Cancer Therapy Scale (33 items). For the Internet survey, a Web-site was developed and maintained while conforming to the guidelines and policies of the HIPAA regulations and the SANS/FBI recommendations. Potential participants who saw the study announcement through general ICSGs, ethnic-specific ICSGs, and ethnic-specific ICs were asked to visit the project website (the website address will be added here). When they visited the project website, they were asked to get a copy of the informed consent sheet, provide their consents by clicking the ‘I agree to participate’ button through the Web-site, and answer the Internet survey questions by entering their answers through the Web-site. The participants were informed that data collected through the Internet survey would remain confidential unless a participant appeared at risk for harm. It took about 30 to 45 minutes for a participant to complete the survey. By announcing the study through all the ICs including the general and ethnic-specific ICSGs and ethnic-specific ICs; a total of 361 visited the project website and only 132 participants who were screened to be eligible for the study, have completed the Internet survey. The participants who completed the study included 107 Whites, 12 Hispanics, 10 Asians, and 3 African Americans.