Ever since the rise of online support groups it has been presumed that there is an empowering effect from patients' participating in these groups, despite a lack of evidence to back up this assumption. In this study we explored if, and in which ways, patients feel empowered by participation. Additionally, we studied which empowering and disempowering processes occur as a result of taking part in these groups. To accomplish this aim, we interviewed 32 participants of online support groups. This analysis revealed the following empowering processes: exchanging information, encountering emotional support, finding recognition, sharing experiences, helping others, and amusement. Disempowering processes were mentioned far less often. Empowering outcomes mentioned were being better informed; feeling confident in the relationship with their physician, their treatment, and their social environment; improved acceptance of the disease; increased optimism and control; enhanced self-esteem and social well-being; and collective action. This article demonstrates that participation in online support groups can make a valuable contribution to the emergence of empowered patients.

This article is the second of a two-part series reporting on a population-based study intended to use an eHealth system to examine the feasibility of reaching underserved women with breast cancer (Gustafson, McTavish et al., Reducing the digital divide for low-income women with breast cancer, 2004; Madison Center for Health Systems Research and Analysis, University of Wisconsin; Comprehensive Health Enhancement Support System [CHESS]) and determine how they use the system and what impact it had on them. Participants included women recently diagnosed with breast cancer whose income was at or below 250% of poverty level and were living in rural Wisconsin (n = 144; all Caucasian) or Detroit (n = 85; all African American). Because this was a population-based study all 229 participants received CHESS. A comparison group of patients (n = 51) with similar demographics was drawn from a separate recently completed randomized clinical trial. Use rates (e.g., frequency and length of use as well as type of use) as well as impact on several dimensions of quality of life and participation in health care are reported. Low-income subjects in this study logged on and spent more time on CHESS than more affluent women in a previous study. Urban African Americans used information and analysis services more and communication services less than rural Caucasians. When all low-income women from this study are combined and compared with a low-income control group from another study, the CHESS group was superior to that control group in 4 of 8 outcome variables at both statistically and practically significant levels (social support, negative emotions, participation in health care, and information competence). When African Americans and Caucasians are separated the control group's sample size becomes 30 and 21 thus reducing power. Statistical significance is retained, however, in all four outcomes for Caucasians and in two of four for African Americans. Practical significance is retained for all four outcomes. We conclude that an eHealth system like CHESS will be used extensively and have a positive impact on low-income women with breast cancer.

The goal of the current study was to examine how social support and coping strategies are related in predicting emotional well-being of women with breast cancer. In achieving this goal, we examined two hypothesized models: (1) a moderation model where social support and coping strategies interact with each other in affecting psychological well-being; and (2) a mediation model where the level of social support influences choices of coping strategies between self-blame and positive reframing. In general, the data from the current study were more consistent with the mediation model than the moderation model.

Little is known about the effective elements of Interactive Cancer Communication Systems (ICCSs). A randomized trial explored which types of services of a multifaceted ICCS benefited patients and the nature of the benefit. Women with breast cancer (N=450) were randomized to different types of ICCS services or to a control condition that provided internet access. The Comprehensive Health Enhancement Support System (CHESS), served as the ICCS. ICCS services providing information and support, but not coaching such as cognitive behavior therapy, produced significant benefits in health information competence and emotional processing. Provision of Information and Support ICCS services significantly benefited women with breast cancer. More complex and interactive services designed to train the user had negligible effects.

Numerous studies have investigated the effect of Interactive Cancer Communication Systems (ICCSs) on system users’ improvements in psychosocial status. Research in this area, however, has focused mostly on cancer patients, rather than caregivers, and the direct effects of ICCSs on improved outcomes, rather than the psychological mechanisms of ICCS effects. In an effort to understand the underlying mechanisms, this study examines the mediating role of perceived caregiver bonding in the relationship between one ICCS (the Comprehensive Health Enhancement Support System, CHESS) use and caregivers’ coping strategies. To test the hypotheses, secondary analysis of data was conducted on 246 caregivers of lung cancer patients. They were randomly assigned to either the Internet with links to high-quality lung cancer websites or access to CHESS, which integrated information, communication and interactive coaching tools. Findings suggest that perceived bonding has positive impacts on caregivers’ appraisal and problem-focused coping strategies, and it mediates the effect of ICCS on the coping strategies 6 months after the intervention began.