Caregivers
Finding Support Beyond the Support Group
Not too long ago, the "traditional" way a bereaved parent could find help was in a support group setting. Groups were a safe place for parents to share about their loss, as well as the grief, sadness, and despair that accompanied the loss. Group was a place to connect with others who were experiencing similar sadness, a place to vent, cry, and laugh with others who knew the same pain. Fortunately, support groups still offer this safe place for those who need it, and they can be found in many settings across the country.
It is not surprising, however, with the internet ever-more accessible and in more homes today, enabling the masses of people to find just about anything with the push of a button, that "support groups" have moved online. Information on just about any topic can be found with a little searching online, and this includes pregnancy loss and infant death. On any of the many sites that serve bereaved parents, there are many forums where parents can share about their loss(es), and connect with other parents. These are often in the form of message boards; the National Share Office offers many message boards, and also chat rooms for bereaved parents and for those who are pregnant after a loss.
Share started out with just a couple of message boards, but we have seen the popularity of the boards explode, with the number of users jumping every year. Today, the Share website offers ten message boards that are available to bereaved families: Bereaved Parent, Pregnancy After a Loss, Parenting after Loss, Fathers and Grief, TTC/Infertility after Loss, Grieving Grandparents, Mourning an Early Pregnancy Loss, Facing the Future Without Another Baby, Feeling Better but Still Remembering, and Special Remembrances (a place to share poems, anniversaries, ways to have special celebrations). The boards have heavy traffic everyday, and like their "real-life" counterparts, offer a safe place to connect, vent, cry, laugh and share.
On any given day, the Share message boards have over 200 posts, and new people register to use the boards daily. There are currently over 1,650 registered users. This is a community of people who are reaching out to one another, offering support and kind words, and who welcome newcomers with open arms. For those who don't have a support group in their area, and indeed even for some of those who do, these message boards may become their life-lines.
In addition to the extra boards, Share's forums have seen other changes over the past few years. The boards used to all be moderated daily; moderating the boards allowed the Share staff to stay abreast of what was happening on the boards, and kept the environment a safe one. After all, people are sharing about very tragic events, and there is some dissension and strong opinions that come up from time to time. Moderating ensured that hurtful words weren't hurled, and that the boards remained safe. But it also meant that messages waited in a queue until someone checked them, and this was usually just twice per day. We started hearing from many users that they wanted messages to post automatically, so that there was more of a dialogue occurring between members. After much discussion, including how we would continue to stay aware of what was happening, we decided to allow messages to post automatically. This change stayed in place for many months, but problems began coming up, and we decided to return to moderated boards, this time enlisting the help of several trained volunteers who would keep a watchful eye on the boards, and post messages. Now, messages post several times per day, and even if a Share staff person is not able to go to the boards everyday, we know that a volunteer will be there, and will inform us of anything that could cause problems.
The message board page also has the Caregivers Board, which hasn't had much traffic since its inception. We're hoping that it will someday catch on, as the other boards, have, and will be a confidential place were caregivers can share ideas, thoughts, ask questions, etc. The Caregivers board is completely confidential and is only accessible by password, obtained through the Share Office. (The Fathers and Grandparents boards are also confidential and password-accessible, so that the folks feel safe in sharing without fear that some family member will be able to read what they've said).
The Share chats are also busy places; each chat is held weekly and is moderated by either a Share staff person or a trained volunteer. There are also featured "speakers" to discuss specific topics at relevant times (i.e. holidays and grief). Because it is happening in real time, chats are very similar to a support group, but are also very different because of the fast pace.
And all of this is available at Share! There are boards and chats at many sites for bereaved parents, and at many sites offering help for specific diagnoses, illnesses, etc. Finding support beyond the support group these days is as easy as clicking a button, and is so very important to so many people.
