Suggestions to boost communications and engagement

MrMoore

Joining these groups can be scary for people as they don't know what community they are coming into and how they will be received. I'd like to suggest a few things to help get people engaged more.

1. On joining, someone contacts the person to get to know them a little better, explains the use of the website and Facebook, and where that person is most likely to connect with others.
2. There are smaller private groups for specific types of people where the person might feel more at ease and be more likely to connect. E.g., specific condition groups, food/diet-related groups, area groups, LGBTQ+ groups, community development groups, etc. I feel it's important to give people safety and space to be themselves.
3. A buddy system would help link existing members up with new members. This might only involve checking in with them twice after joining to see if they have any questions and to get feedback.

These measures should increase feedback and improve communication.

Feedback welcome :)

Ellen

Wow Thank you @MrMoore

I am sure our Admins will be really interested to read your post thank you very much for taking the time to put it all together.

Best wishes

Ellen.

stickywicket

Hi @MrMoore

I'm not a Mod and definitely not one of our techie people, just someone who has posted on here for years and seen it change and develop. As such, I've learned a thing or two about how it works (and doesn't) and, as you ask for feedback, here's my two pennorth.

I think it's a great idea to get people communicating more. In times past this happened a lot. people stayed, encouraged each other, shared a lot of laughs greeted newbies. But things changed a few years ago. Far more people arrived, far more than 'the regulars' could cope with. Many came, and still come, just wanting an answer to a question or sympathy or empathy or just a place to float their anger and anxiety. This is a perfectly acceptable use of the forums but not one that a few regulars can adequately deal with. 

So, as regards a Buddy System - who will buddy up with people? Even the Mods are struggling to answer every newbie as one look on the 'Say Hello' forum will show. There aren't enough 'buddies'. We all have commitments of various kinds not to mention depleted energy levels due to arthritis.

Plus, I think many newbies would prefer the anonymity of a forum rather than a total stranger offering to be their buddy. I think I'd have run a mile. I came on to share a few 'arthritic laughs' and have a good time while, hopefully, being useful to others. I now have several friends whom I first 'met' via the forums.

As for groups - I'm not sure what you had in mind. Certainly, I've long advocated fewer forums not more. The more we have the less they are used and that's off-putting for anyone thinking of using them. (If the last post on it was a month or even several months ago) I guess we could have an OA forum and an RA one, a PsA one and AS one but (a)some of us are greedy and have more than one nd (b)I think we gain by all sharing our various bits of knowledge. Food/diet related threads turn up regularly. I just don't get why anyone would need a 'group' for them. Wouldn't it seem a bit exclusive and cliquish? An entire forum of such separate groups, or group forums, would take ages to scroll through. Maybe you had something different in mind to how I'm understanding it. Maybe you could explain? Also, I don't really see why LGBTQ people would need a separate group. Arthritis is , sadly, an equal-opportunities disease. We've had lots of people on here casually mentioning their partners or spouses of the same gender. They've always seemed happy to deal with the rest of us as we are with them. Pain is pain is pain.

I hope I don't sound too discouraging. I guess I just feel that your ideas, admirable though they might be for a big organisation, won't really work for a charity's forums run, largely, by volunteers who all have arthritis or care for someone who has. Please disabuse me of this if I'm wrong. And please accept I'm trying to help not discourage.

MrMoore

Hi @stickywicket ,

Thank you for your poetic and comprehensive response. I appreciate your feedback as this is all a learning experience.

On joining the forum recently, I kept getting confused over how this works and what I was looking at.  It kept putting me off if I’m honest as I wasn’t clear on how I was meant to use it.  I understood the forum was a way to connect with others, so I had this expectation when I joined.  What I experienced was very few people commenting, few pictures or details on profiles, no understanding of how many people were on this, who was seeing my posts and personal information, etc.  Some of this information may be on the site, but as a new joiner, it was a little overwhelming.  Experience has taught me to be cautious.

Your explanation of how the site is used is excellent and I can see this when I look around.  You mentioned it changed a few years ago when more people arrived than the regulars could cope with.  I don’t know the structure and duties of paid staff and volunteers for Versus Arthritis so I wouldn’t want to tell anyone what to do as I have no idea about anyone’s resources.

Regarding the buddy system, again this would depend on the structure of the people running the site and available resources.  If the VA people structure is small compared to the user group, it could only really happen if the users had the option to do this using website, and for the website to make the links.  This way it isn’t dependent on being staffed.

Regarding the groups, I understand where you are coming from.  My goal with these is not to create more separation, but to give people a safe starting environment where they can meet like-minded people on a similar journey and get comfortable with what to share on the main forum that will benefit all.  Currently, a new member is potentially walking into a group of thousands and that’s overwhelming.  Also, I don't want to bore everyone with small questions that don't need to be published.

It’s great you have shown the forum is inclusive and supportive of all.  Unfortunately, many in today’s world do not share this open-mindedness so I’m apprehensive about sharing.  We are already suffering from horrendous conditions.  To join a public forum and risk sharing our personal details is scary.  We don’t know who’s reading and who has the power to affect our lives.  After seeing more of the responses, I can see this is a supportive community that wants to listen and help, but a new member won’t see this immediately.

As I mentioned earlier, I don’t know the structure or resources so I don’t feel it’s suitable for me to suggest what can be done. What I have seen work in other communities is for smaller groups to exist with like-minded people, provided they are onboard with the mission objective of the charity.  Maybe if volunteers want to host online meetups, this could be a solution. 

I hope this makes sense but please do share any other questions if you have them.

RogerBill

Some thought on buddy or one to one support schemes: I believe these schemes can be very useful in certain circumstances. I was a volunteer on the Prostate Cancer UK one to one support scheme which is an anonymous telephone service. As someone who had had a prostatectomy operation I shared my experiences with others who had recently been diagnosed and who were faced with the same choice of treatments that I'd been given and who wanted to hear what the operation entailed and the recovery and aftereffects from someone with "firsthand" experience! Other volunteers had different backgrounds and specialised in other areas, eg some were wives or primary carers.

The scheme is carefully structured and managed and consequently requires significant resources including nurses who are able to pair patients with an appropriate buddy. I also did some research into other cancer buddy schemes in my role as a volunteer for another charity and found a variety of different structures eg some provide face to face rather than telephone support. I forwarded some details of this research to Versus Arthritis.

I think buddy schemes for specific arthritis conditions could be useful eg one for those considering a hip replacement and another for knee replacement. However, the cost and resources required to properly setup and run such schemes shouldn't be under estimated.

frogmorton

Great discussion everyone.

I am really interested in this as i go back a long way with this online community.

I remember (even pre Stickwicket!) when the forum was a lively place loads of threads receiving anything up to 20/30 replies. People came and they stayed and contributed. We had lots of fun threads online games, poetry etc. Along with an active thread for 'early birds' (me) and one for 'night owls' who posted into the small hours.

The only thing still remaining is the café which is inhabited by those of us 'old members' who still want that kind of interaction. I do worry though that even the cafe may disappear one day as it can probably appear almost private or exclusive to people popping in for a nose so is shrinking...

Then along came facebook and the like and people 'needed' to be there too and perhaps time constraints meant they could only cope with one online forum. A few of our reliable regulars also passed away one very recently and some are now not well enough to post regularly anymore, but hopefully still pop by.

All I can say is now I think a lot of people come in with one question, get their answer and that's it. They don't have the time or maybe desire to get to know each other as they used to here and I think that's absolutely fine. The forum has done it's job for those people too.

I have to confess that I myself am a 'lurker' on another community where I rarely contribute just pop in with my worry and do a quick search of conversations to get my answer without disturbing anyone I hope.

I do wonder though how it is for new people. They go to 'say Hello' post to say hi and ask their question get very few replies, but maybe that's enough????

Right I don't think I helped any but I'm so glad you started this discussion @MrMoore

Toni x

stickywicket

A very quickie since, as usual, I'm pushed for time.

@frogmorton always speaks wisely and kindly and is always helpful. She writes "I do wonder though how it is for new people. They go to 'say Hello' post to say hi and ask their question get very few replies, but maybe that's enough????" I, too, have my doubts. I think it's enough for some but that others, expecting maybe four or five replies and seeing only one, get discouraged. I'd like to see newbies directed by the Mods to Living With Arthritis, Chit Chat or wherever seems most appropriate as more people tend to reply there.

@RogerBill - I think your thread has been of great interest to many 'hippies'. It also attracted others as we had a few hip ops at the time. I think this was really valuable as no two experiences were the same and surely those going in for replacements need to know that, not expect too much too soon but be aware that their own input re exercises is essential.

@MrMoore - I think the whole world can see posts which is why I'm a bit cautious about giving away too much info about myself. As for a photo - nah, don't want to put people off! Besides, people seem to put up photos of pets now.

Lilymary

Hi @MrMoore , welcome to this lovely forum. I signed up in 2020 when my hip announced from nowhere that it had had enough and needed replacing. I suddenly found I had a huge number of buddies who supported me throughout my journey, and I couldn't have managed without them. Some are now online friends, who I cherish. I don't think a one-to-one buddy would have helped as helpful, as everyone's journey is so different that the advice of just one person's experiences may not have matched up to my own lived experience. The multiple view points were really valuable.

If you're unsure how to use the forum, or facebook, just ask on any forum here. Someone will happily come along and help, but as has been said before, we don't have enough mods or long term members to buddy up. The mods are usually very good at greeting new members and starting them off in the right direction for their condition with links etc. I think it's a mark of VA's success in raising their profile and gaining so many new members, but it does mean there are a lot more newbies to welcome into the fold, which is hard to keep up with. But to be honest I always tend to just drop by regularly through the "recent posts" link to see if there are any threads I might be able to contribute to usefully, or I scroll back or search for older threads. They all appear on here whichever forum you post on.

As for additional different forums, they have their place, but there is a search facility (see magnifying glass, top right hand corner) which can guide you towards "condition-specific" threads. There are also links/pages within the website that offer specific advice on issues such as diet, fatigue, pain management, exercises specific to the various conditions, preparing for a whole range of surgeries, etc. I'm not sure that so many specific forums wouldn't actually be more confusing, particularly if you have multiple conditions, as so many on here have,

As @stickywicket points out, I have found it enormously helpful, and educational, getting to understand the other forms of arthritis and the spectrum of how they affect sufferers. I have learnt so much about other conditions from other members that I wouldn't have learned if I'd just been directed to one forum for each condition. But whatever the condition, we are all united by pain, fatigue and frustration that these bring. While some of the treatments may be different, the effects on our lives are much the same and people's hints on coping mechanisms are so helpful, and don't need to be condition-specific.

I have always found this forum to be immensely welcoming, while maintaining personal privacy. It's up to individuals how much they reveal about themselves, but most prefer a degree of anonimity for a variety of reasons, myself included. I prefer to separate my work life and health conditions - I can never be sure who reads these, and I would rather my clients didn't hear me whingeing about how rough or discouraged I'm feeling on a bad day. I am aware of a couple of friends who joined the forum incognito for a while, but I respected their privacy nevertheless on this forum and didn't let on that I'd worked out they were on here. I just subtley offered more support when I next saw them.

Many people are "lurkers", and are happy to just search around to find posts or links that are helpful to them. Others are shy of sharing, and maybe just post a few times, but I tend to find those that post more get more back from it, as people get to know them and understand their journey. It's up to the individual how they want to use the site. I'm probably the "bold as brass" variety, but I do understand that many will always find joining a forum a bit scary. I recently had treatment for breast cancer, so popped on a couple of reputable UK forums. When I heard what other people were going through it frightened the life out of me so I rapidly withdrew. Had mine been more serious, I may have stayed, but I got lucky and it was all easily sorted. For now at least.

I do hope that you'll find, as I did, that this forum is a friendly, supportive and informative place. If you have specific questions, just post! Many of us are still working/raising families/carers etc, so have demands on our time, and others only have limited energy or dexterity to spend on screen time. Not everyone will have an answer, but hopefully those that do will be able to point you in the right direction. And if you just want a natter, or a moan, we're here for that too. 🙂