Cancer-related electronic support groups as navigation-aids: Overcoming geographic barriers



ESGs may be regarded as a complement or supplement to face-to-face
support groups, or as an alternative. They have several advantages over face-to-
face groups such as:

! absence of geographic and transportation barriers;

! opportunities to discuss stigmatizing, embarrassing, or sensitive issues
in anonymity;

! an environment that encourages self-disclosure, honesty, and intimacy;
and

! opportunities, even for those who have rare diseases, to find peers
online.1

Some disadvantages include:

! a large volume of mail with a considerable amount of unwanted
communication;

! negative emotions (known as "flaming"); and

! a lack of physical contact and proximity.1

And, as with Web content, there are concerns about inaccurate
information and information that is not based on evidence, (in exchanges about
alternative treatments, for example).

Winzelberg et al.2 have summarized some advantages and disadvantages
of ESGs for breast cancer patients. Advantages include flexibility in the modality
of delivery (e.g., via mailing lists, chat rooms, etc.), the variety of facilitation
options, and the need for fewer resources compared with face-to-face groups.
Disadvantages include the need for computer and Internet access and the need
to know the language used in the ESG. These authors concluded that ESGs
offer many advantages, but cautioned that they present some ethical issues that
need to be addressed.2 The Discussion section that follows includes examples of
these issues.

An important issue is whether or support groups of any kind might yield
survival benefits in addition to the benefits summarized above. The literature on
evaluations of community-based cancer support groups indicates 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.3 It also seems
reasonable to have similar expectations for ESGs.

The 'Internet paradox' controversy

It is possible that some participants in ESGs could become overly reliant
on their Internet-based relationships, resulting in increased social isolation and
reduced well-being.1,2 Eysenbach1 reviewed this "Internet paradox" controversy
and concluded that longitudinal studies or randomized trials are needed to



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