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What can we do to make caregivers forum more active?

a_oaklee
Posts: 462
Joined: Nov 2013

I am guilty of not participating very much.  I know it bothers me when I respond to someone and they dont follow up with a comment, to tell us how they are doing.  I wish that didn't bother me, but it does.  I know we do need to be careful here because what we write is public.  I want to feel a fellowship with other caregivers and build the community.  Do you have any comments to offer?  Is it enough to just post a topic and then not come back to comment?   Any ideas for improvement?  Am I the only one who needs more?  I hope I am understood.

GingerMay's picture
GingerMay
Posts: 134
Joined: Sep 2016

I have wondered the same. I work in user-engagement of technologies and pondered this point in the two years I've been here looking for feedback, advice, or just to feel I'm not alone. I feel very fortunate to have found this site and grateful for each person who took the time to read my posts and reply.  I know them only by their usernames and pictures, but they have all given me solace during tough times. If I've returned the same to anyone I am happy. If there's any way to enhance that, I think it would be great. 

 

 

a_oaklee
Posts: 462
Joined: Nov 2013

Thanks for writing.  Your job sounds like it may be interesting.  I dont really know how to build a cozy group here.  The only thing I can come up with is try to get a chatty thread started.  

I know peoples time is precious.  Mine is too.  Do you think its asking too much for a person to make some kind of acknowledgement  to the people who are trying to help them?  Sometimes I feel like they dont even come back to read, and perhaps they just want to vent.  I understand that too.  I've been at this a long time, with ups and downs in my husbands condition.  I went to one caregivers support meeting, but it wasnt geared toward caregivers helping each other.  It was all about how to take care of our loved one.  I think I've got that handled with the slew of docs we have.  I've always wondered why the communities based on a condition are more cohesive than a bunch of caregivers.  I need to know I'm not alone struggling with the changes in my life.  

cmb's picture
cmb
Posts: 411
Joined: Jan 2018

While I've been a caregiver in the past, right now I'm the one with cancer. But I still check other boards such as this one and the Emotional Support one and respond to a post if I think I have something to offer.

Before I joined the board that matches my cancer (uterine) I spent several months reading current and past posts on that board. Since I was at the end of my treatment, I wasn't able to take advantage of all the advice that the other ladies offered. However, I still found the information helpful.

But I thought a long time before deciding to actively participate in that board. While reading past posts I saw many messages from women who posted just once or twice and then never again. But I liked how the board "regulars" almost always responded to new posts, even to those who never posted again. Sadly, some of the most encouraging and active participants have since died, but others who joined more recently have taken their place.

I decided that if I was going to join the board I would have to commit being responsive to others who post, whether I had their specific form of cancer or not. I don't feel obliged to chime in on every post, but I do watch to make sure a new person always gets at least one response from me or one of the group of regular responders. And if someone has my type of (rare) cancer, I make it a point to respond, even if others also respond.

But while the Uterine board is quite active, I've also seen that other cancer-specific boards are far less active, with many posts left unanswered. That bothers me, even if the person posting is someone who only posts once. Did some of them only post once because no one responded or because they only needed to vent one-time? I wish that I knew.

I believe the uterine board is more vibrant due to the number of "regulars' who actively participate. Could the same thing happen on the caregivers board? I don't know.

a_oaklee
Posts: 462
Joined: Nov 2013

Hi. It sounds like you have a valuable perspective being both a patient and a caregiver.  You have made some very good points and I must say I think you are very compassionate to others.

I know I'm looking for a group of caregivers to steadily communicate with.  Does anyone know of other sites that I can check out?  

As you can see I joined back in 2012, but I didn't find much active participation here.  Perhaps it's gotten better.

Most caregivers feel alone, emotional, and neglected by everyone.  I think most of us need a group of other caregivers to feel better.

cmb's picture
cmb
Posts: 411
Joined: Jan 2018

I haven't joined this site myself, but I occasionally come across it when doing some internet searches.

https://www.inspire.com/

The "groups" on the site cover a lot more subjects than just cancer and I don't know if there are specific threads for caregivers, but you may want to check it out.

ClaCla
Posts: 137
Joined: Jul 2017

One thing that would probably make the site more active would be if a person received an e-mail notification that someone has responded to their post.  It's possible that new people who post but never check back aren't sure what the site was where they posted their discussion, so can't get back to it.  CSN lets you know when someone has sent you a message, but not when someone has replied to your comment.

cmb's picture
cmb
Posts: 411
Joined: Jan 2018

An interesting idea to have notifications of a reply to a post. In an ideal scenario, the ability to receive these notifications could be turned on or off. Frequent posters may not want to receive lots of these notices while a new or infrequent poster might really like them.

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