Abstract
BackgroundAt least some forms of breast cancer are increasingly being viewed as a chronic illness, where an emphasis is placed on meeting the various ongoing needs of people living with cancer, their families and other members of their social support networks. This commentary outlines some approaches to the evaluation of cancer-related support groups, with a particular emphasis on those designed to provide long-distance support, via the internet, for women with breast cancer.DiscussionThe literature on evaluations of community-based cancer support groups indicates that they offer a number of benefits, and that it is more reasonable to expect an impact of such interventions on psychosocial functioning and/or health-related quality of life than on survival. The literature on both face-to-face and online social support groups suggests that they offer many advantages, although evaluation of the latter delivery mechanism presents some ethical issues that need to be addressed. Many popular online support groups are peer-moderated, rather than professionally-moderated. In an evaluation of online support groups, different models of the role of the "navigator" need to be taken into account. Some conceptual models are outlined for the evaluation of the "navigator role" in meeting the informational, decisional and educational needs of women with breast cancer. The Breast-Cancer Mailing List, an example of an unmoderated internet-based peer-support group, is considered within the context of a Shared or Tacit Model of the navigator role.ConclusionApplication of the concept of a "navigator role" to support groups in general, and to unmoderated online ones in particular, has received little or no attention in the research literature. The navigator role should be taken into account in research on this increasingly important aspect of cancer communication.
Highlights
At least some forms of breast cancer are increasingly being viewed as a chronic illness, where an emphasis is placed on meeting the various ongoing needs of people living with cancer, their families and other members of their social support networks [4]
Support groups for women with breast cancer To cope with their illness, many women participate in breast cancer support groups
Reliable and valid indicators of health-related quality of life (HQOL) are a crucial aspect of cancer outcome studies [2], appropriate attention needs to be paid to the transfer of research findings into practical applications [5]
Summary
Support groups for women with breast cancer To cope with their illness, many women participate in breast cancer support groups. Dicators (such as number of calls received), indicators of patient/client satisfaction (such as meeting patient/client expectations) and indicators of more systemic evaluation issues (such as measures of cost-effectiveness) Might these same conceptual models for the navigator role, and these same approaches to their evaluation, be applied to internet-based support groups? Another example of an internet-based support group (the Breast-Cancer Mailing List) will be considered briefly It provides an example of the Shared or Tacit Model of Farber et al [4], a model quite different from their Facilitating Navigator Model. It seems reasonable to assume that online support groups can be regarded as a complement to face-to-face support groups (when the latter are available) and as an alternative when they are not Whether or not this assumption is correct, another important systems evaluation issue is: how best to evaluate the effectiveness of the navigator role? Systemic evaluation outcome variables, and especially ones focused on the navigator role, may be the most crucial ones for which appropriate measures need to designed and implemented
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
