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Online Communities And Support Groups: One Man’s Penance Is Another Man’s Empowerment

For many men, an immediate recommendation following a prostate cancer diagnosis is to join a support group. This will generate a range of responses, from “bring it on” to “run a mile”, and much in between. There is certainly a Marmite quality to these groups, whether online, offline, or led by hospitals, charities or sporting organisations. Love or loathe, embrace or repel, support groups are growing in number and impact. What’s impressive is the sheer variety of them, and how they can be defined and experienced so differently.

What brings some men to support groups? Many things; Mental health support, family support, emotional sustenance top the list. The act of participation, including talking, sharing and “finding a tribe” are powerful drivers.

Those who sponsor support groups also influence who attends and how often. Charities, hospitals, and sporting clubs are all involved and will provide varying levels of access and trust.

Interestingly, or perhaps alarmingly, there is very little easily accessible research investigating men’s participation in support groups and the benefits derived from them. Googling “research on men’s participation in prostate cancer support groups” yields 2 studies, the most recent being a Canadian study from 2014.

Its conclusions:

“Results showed that PCSGs were positively valued, particularly for information sharing, education and psychosocial support. Poor inclusivity, privacy, and accessibility were identified as potential barriers, and recommendations were made for better marketing and web-based PCSGs to increase engagement with potential attendees.”

An American study from 2000 explored why men with prostate cancer seldom attended support groups, pointing out that women outnumber men by three to one in cancer support groups, and that prostate cancer support groups are sponsored by churches, hospitals, professional organizations, and community agencies in response to the unique challenges men face in developing coping strategies associated with their illness experience.

It concluded that:

“Research is needed to identify the efficacy of alternative and complimentary means of support for men with prostate cancer. The developmental and psychologic orientation of “what it means to be a man” needs to be considered. Indeed, a one-to-one support program is consistent with many theories and may be a more acceptable means of support for men when compared with current support groups.”

I spoke with Chris Lewis founder of Chris’s Cancer Community, one of the most global and influential online communities, based here in the UK, about community support for cancer patients.

When Chris established the community in 2012, the internet and behaviour of people around it were very different than they are now. He started out with the motivation to help others who, like him, had a cancer diagnosis and were experiencing confusion and disinformation about treatment. Publishing blogs very quickly attracted others who were keen to share their stories, and a community was born.

Now Chris has emerged as a powerful voice amongst politicians, policy makers and media in advocating for cancer patients.

This is proving important during the Covid era, characterised by some powerful forces: the global nature of the pandemic and scale of people affected; the displacement of cancer patients in respective healthcare systems; and the severe hit that cancer charities have taken in fundraising and service provision.

Communities like Chris’s are not just comfort or solace in a time of fear and confusion and abandonment, but a vital source of information on diagnostic and treatment options. They are more influential and potentially more beneficial than ever, and so can be seen as powerful advocates for patients in a world dominated by multiple organisations, conflicting information and lots of noise.

Whether it’s advocacy, solidarity, information, solace or comfort being sought, there is likely a support group out there that can provide any or all of these. Given the vast changes in the cancer treatment landscape during the Covid era, 2020 might be the year to overcome prejudices and check a few out.

Chris’s Cancer Community

Prostate Cancer UK Support Group finder

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