Rare & Pediatric Cancer Support
Share |

Home   Support   Story   Forum Support   Info   News & Clinical Trials   Cancer Dictionary   Events Calendar   SiteMap   Twitter   Facebook

Start A Support Group

Cancer patients reach out for support for a variety of reasons, looking for individual needs to be met through the warmth and caring of others.  Those reasons range anywhere from needing another person to help them emotionally, to needing advice on financial decisions or end of life issues.  So, the type of support needed by each person is highly individualized.  And those who choose to start a volunteer or self help support group, also have a variety of reasons for doing this.  Hopefully they are noble, yet realistic.  

I have given support for a few years on the internet and I have learned some lessons in the school of hard knocks.  In this section I will pass on some of those lessons and some other issues that you should consider before you tackle the job of starting a support group.  I hope that you consider this information worthwhile.  

Prior to starting a support group, you should consider the format that you would like to have for the group.  Once the format has been decided, it is important to give each new member of the group a copy of the rules or format of the group.  

Will it be a face-to-face group, or an online one?  With rare cancers it is somewhat easier to find others with your cancer through the internet.

Will all people be welcome, including patients, family, caregivers and friends?  Or will it be a closed group for patients only?

Are people going to be allowed to post or discuss any topic; or will it be a moderated group where a group leader will choose which topics will be allowed?  When making this decision you need to keep in mind the myriad of topics that are sometimes discussed in a cancer support group; such as religion, sexuality, treatment option opinions, financial needs, family conflicts, pain treatments (including illegal drugs), end of life issues, resentment and anger, advertising for products, and topics with a highly technical medical content.

Are there any reasons you would find it necessary to remove someone from the group?  For example, trying to sell something either in the group or away from the group to other members, being verbally or physically abusive to another member, or not adhering to the rules or format of the group.  If you answer yes to any of this, reasons for removal should also be clearly stated in your group mandate.  

Will there be a mechanism in place for the group as a whole to make decisions about changing the mandate of the group?  Or will one person be responsible for deciding the mandate?

Next, you should also consider your own personal limitations and make provisions for any potential problems.  If you believe you are weak in any of these areas, you might want to consider a co-leader or even a person other than yourself as leader.

Are you physically able to take on the responsibilities of maintaining a support group?  Keep in mind that this is a tiring, demanding job at times.  Is your personal health up to the task?  

Will you set a mechanism in place in case your own health keeps you from doing the work necessary to keep the group active?  Who will take the group over if you are unable to do your job?  

Are you prepared to be in the middle of some volatile emotions, at times?  Part of being in charge of a cancer group is taking on the tough issues like fundamental disagreements among group members.  

Do you believe that you can keep an unbiased mind when dealing with the group's dynamics?  In other words, can you keep your own personal opinions about members and their beliefs out of the equation?

Will you be emotionally strong enough to be able to step aside when you are no longer comfortable running the group?

Do you have tough skin?  Believe me, for this job, it is mandatory.

Now I will share just a few of my personal mistakes in running a group.  I have seen some rather strong disagreements over religious content, medical content, treatment opinions, and acceptable discussion areas. As a result, I made the very foolish mistake of trying to unruffle the feathers of the battling parties.  That is a no win situation that can open a Pandora's box for the entire group.

And I have also put myself in the middle of situations that were volatile with the belief that I could be the voice for someone else.  It is not uncommon for the quiet members of a group to pull you aside or contact you in private and request that you discuss with another member an issue they are having with that member because they do not have the strength to do it themselves.  I have, on occasion, put myself in the middle of a member conflict by addressing a situation or asking a question that the quiet member felt uncomfortable asking.  Hindsight is 20/20.  A word to the wise, don't get in the middle of someone else's conflict unless you are willing to bear the consequences of doing this.  That person will find their voice if they truly need it.  

And lastly, the saddest lesson that I have learned, is the necessity for a group leader to formally pass the torch on to a new leader, when the need arises (or preferably before it arises).  I have seen leaders die in their position and not publicly declare a new leader.  This can create a conflict in the group that could be irreversible.  I have seen groups flounder without a leader to the point of non-existence.  This situation left many people with an unfulfilled need for support and caring.  My personal belief is that support groups, of this nature, require a leader.  Even if that leader is a rotating position where each person in the group takes a turn at taking on the responsibilities.  If you are the group's leader, declare a backup leader in the event that something should happen to you.  

I hope that if you choose to start a support group, you will take an honest inventory of yourself and a realistic outlook on what a support group is all about.  And, of course, I wish you a great deal of success and longevity.