Online Disease Specific Support: The Effects on Rare Cancer Types

Since the beginning of the internet age, researchers have been interested in the psychosocial effects of online experiences. As a result of the growing evidence of the complex, but poorly understood, mind body relationship, the psychophysiological effects of online support as it effects disease have become a focus of interest (Juneau & Remolino, 2000). The growing field of psychneuroimmunology has provided ample empirical evidence that psychosocial experiences, play a salient, perhaps primary, role in immunological functioning, susceptibility to disease, disease progression, and overall survival (Goodwin et al., 2001). Huber et al. (2011) found online peer-to-peer interaction provided the same support as traditional face-to-face support groups, and online forums provided an ease of use in that direct personal contact was circumvented.

There is, however, a paucity of research on the effects of disease-specific online support for rare cancer types. This paucity is regrettable since the addition of disease-specific online support is readily available for many cancer patients, at least those in developed nations. As an adjunct therapy in the treatment of rare cancer types, oncologists can prescribe this effective addition to a new or established therapeutic treatment plan. Since social support, in the form of face-to-face support groups has been somewhat effective in the survival of cancer patients (Goodwin et al., 2001), it seems prudent to determine the role of disease-specific online support for rare cancer types. Maintaining a sense of control over disease is a salient, and perhaps critical component of contending with the emotional experience of a cancer diagnosis (Huber, 2011; Seckin, 2009; Sen, 2008). It is prudent and imperative to determine the most effective means of evoking this sense of control in cancer patients, and to understand the dynamics of peer-to-peer influences on gaining a sense of control derived from online support (Huber, 2011).

An abundance of research exists on the positive effects of social support for a diverse range of cancer patients of both genders (Goodwin et al., 2001). There is a handful of studies on the effects of online group support for cancer patients (Huber et al., 2011); however, far less on the psychosocial effects of disease-specific online support groups for patients with rare cancer types. If the addition of online support specifically related to the patient's cancer type is an effective addition to medical treatment, understanding the effects of this type of support may be a valuable tool for patients as well as their healthcare professionals. The benefits of online support have been documented for cancer patients; however, patients with rare cancer diagnoses may experience challenges exclusive to their particular cancer type. For example, fewer specialists may be available locally, and online support enhances information exchange between patients who utilize specialized oncological care and those who do not

Mortimer, & Spiegel, 2000), and benefits to the cardiovascular system (Uchino, 2006). The maintenance and support of these physiological functions may be valuable, even critical in cancer patients.  Seckin (2009) found patient participation in online support groups perceived their participation as a salient component of their ability to manage the stress associated with a cancer diagnosis, and it instilled optimism and a sense of control. Further, participation increased their knowledge about the disease, and it helped them find meaning in coping (Seckin, 2009; Sen, 2008). If online support participation increases these benefits, then the possibility exists that online support specific to an individual's cancer type has the potential to provide disease information and psychosocial support more specific to the patient's needs. If these benefits have a significant effect on patients with rare cancer diagnoses, including disease-specific online support participation may be an effective component of disease treatment.

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