How cancer survivors provide support on cancer-related Internet mailing lists

Abstract

Background: Internet mailing lists are an important and increasingly common way for cancer survivors to find information and support. Most studies of these mailing lists have investigated lists dedicated to one type of cancer, most often breast cancer. Little is known about whether the lessons learned from experiences with breast cancer lists apply to other cancers.

Objectives: The aim of the study was to compare the structural characteristics of 10 Internet cancer-related mailing lists and identify the processes by which cancer survivors provide support.

Methods: We studied a systematic 9% sample of email messages sent over five months to 10 cancer mailing lists hosted by the Association of Cancer Online Resources (ACOR). Content analyses were used to compare the structural characteristics of the lists, including participation rates and members' identities as survivors or caregivers. We used thematic analyses to examine the types of support that list members provided through their message texts.

Results: Content analyses showed that characteristics of list members and subscriber participation rates varied across the lists. Thematic analyses revealed very little "off topic" discussion. Feedback from listowners indicated that they actively modeled appropriate communication on their lists and worked to keep discussions civil and focused. In all lists, members offered support much more frequently than they requested it; survivors were somewhat more likely than caregivers to offer rather than to ask for support. The most common topics in survivors' messages were about treatment information and how to communicate with health care providers. Although expressions of emotional support were less common than informational support, they appeared in all lists. Many messages that contained narratives of illness or treatment did not specifically ask for help but provided emotional support by reassuring listmates that they were not alone in their struggles with cancer. Survivors' explicit expressions of emotional support tended to be messages that encouraged active coping. Such messages also provided senders with opportunities to assume personally empowering "helper" roles that supported self-esteem.

Conclusions: Many cancer survivors use the Internet to seek informational and emotional support. Across 10 lists for different cancers, informational support was the main communication style. Our finding of an emphasis on informational support is in contrast to most prior literature, which has focused on emotional support. We found the most common expressions of support were offers of technical information and explicit advice about how to communicate with health care providers. Topics and proportions of informational and emotional support differed across the lists. Our previous surveys of ACOR subscribers showed that they join the lists primarily to seek information; this qualitative study shows that they can and do find what they seek. They also find opportunities to play rewarding roles as support givers.

Figure 1

Simplified model of stress and coping (Adapted from stress and coping models developed by Northouse LL, Caffey M, Deichelbohrer L, et al. The quality of life of African American women with breast cancer. Research in Nursing and Health 1999;22:449-460 and Wenzel L, Glanz K, Lerman C. Stress, coping and health behavior. In K Glanz, BK Rimer, FM Lewis, editors. Health Behavior and Health Education. San Francisco, CA: Jossey-Bass; 2003:210-239)

Figure 2

Participant activity levels: expected and actual number of messages

Figure 3

Types of emotional support offered by survivors (N = 389 messages)