And no one is more vulnerable or anxious than when it comes to researching health concerns. The internet is our first port of call for any worry – but news articles can leave us feeling confused and worried about what research shows and evidence recommends. I wrote about this in relation to antidepressants in pregnancy here.
Hundreds of other articles identify our most vulnerable moments and use them to drive traffic to their advert loaded pages. If you’re struggling to conceive it’s hard to avoid clicking on an article entitled ‘Trying to get pregnant – 10 proven sperm killers!’
On the same search results page I found ‘10 things to do if you want to conceive’ and ’10 myths about trying to conceive’. They were basically the same and no one was any the wiser.
It’s really important that people have access to reliable, balanced, current and evidence-based health information. Which is where the Information Standard comes in. Any organisation achieving the Information Standard has undergone a rigorous assessment to check that their information production process generates high quality, evidence-based, balanced, user-led, clear and accurate quality information.
I coordinated the development of these resources, working with the National Director of the Miscarriage Association, the Media Trust and lots of service users and health professionals. Mary Higgins describes them as strong, powerful, upsetting and thought provoking with important learning points. I’m pretty pleased with that.
The resources are online now although we’re not launching them officially until the new Miscarriage Association website is live. But it’s great to see that health professionals are finding them useful already.
There are six films – one each for ambulance crews, A&E staff, GPs and booking in staff supporting women with pregnancy loss and two for anyone talking to women about management of miscarriage and what happens to the remains of their baby. Each one is accompanied by a good practice guide.
Unlike my session for Leeds Mind (which was for community managers and focused on developing a moderation strategy) this session was for moderators themselves.
OCDAction have an established community but they want to expand their moderator team and make sure their current moderation practices are as effective as possible. They planned to use this session to help their first group of volunteers get started. Learning would also feed into new guidelines and support for future moderators.
We started with an overview of the strengths and limitations of online support and the nature of community moderation. We spent the majority of the session identifying and exploring the main skills that moderators might need and practising applying them to example cases. We looked at:
This week I travelled up to Leeds to run a workshop I called ‘An introduction to moderating online communities’.
It was attended by three groups associated with Leeds Mind. All of them were thinking about online peer support. Some had a platform built and in testing. Others were still figuring out what, if anything, they wanted to offer. The session was designed to give a basic overview of those important questions and decisions that anyone setting up an online peer support community should consider. We also explored the benefits and risks of some of the options available and started to think about the needs of specific communities.
“It was a very thorough, well-paced and thoughtfully structured workshop. A great introduction to the topic providing plenty of points to consider” Zoe Ward, Senior Commuications Officer, NHS Leeds South and East CCG
I started the presentation by posing a list of key questions which we considered throughout the session. I thought I’d pose them here too.
These are questions you should be asking people from the very beginning. Without it you risk making expensive mistakes and creating products people don’t want or need. Talk to people. Test your assumptions. Don’t just ask what people want. Ask why they want it and then consider different options for solving that problem. Create something small and test it out. Keep on asking, reviewing and making changes – what people say and what they do in practice can be quite different.
Next we went back to basics and defined our terms. Moderation, safeguarding, peer support, engagement – these can sometimes mean different things to different people. We can’t make useful decisions until we’re all talking about the same thing.
In defining community moderation we came up with a number of different types (including pre and post moderation) and a number of different roles that a moderator could have (including ‘policing’, providing support and facilitating peer support). We discussed what these might look like in practice.
“I’ll always remember the first time I met a ‘PP lady’. It was a very special day.”
“I had lots of friends who were mums but none of them understood what I was going through. I felt weird, lonely and isolated. When I found the forum I was like ‘Oh my god. People understand.”
Every year it is a moving and inspirational day (you can read about what we covered here). As I listened to the co-ordinators speak to new volunteers I was struck once again by just how important their peer support programme is.
In fact I think their services are a really good example of the life changing benefits that online peer support can provide. Peer support can be valuable for everyone but it is absolutely vital for APP.
Research by APP shows that women desperately want to meet other people who have been through PP, to share symptoms and have time to talk. Partners said the same.
Everyone needs to share stories, to be accepted and understood – especially if you’re going through or recovering from severe mental illness. Unfortunately, because PP is relatively rare, friends and family don’t know what is is or what it feels like. There is unlikely to be someone living near you who has been there. Some people may be scared to speak about their experience for fear of stigma and misunderstanding. For most women the APP Peer Supporter training sessions are the first time they have been in the same room as someone who has also experienced PP.
APP’s forums provide that link. They connect people with hundreds of others who can support them. When someone signs up for APP’s one-to-one email support service they are actively matched with someone who has had a similar experience. The chances of finding that offline are very very small.
In September I was contacted by Kerry from The Katy Piper Foundation. The Foundation supports people living with burns and scars. Kerry was looking for more information on managing online forums. She was particularly interested in moderation strategies and procedures for managing safeguarding and escalation.
We had an initial chat on the phone where we explored different ways an online peer support community could be moderated and managed.
Almost every community I have been involved with has slightly different definitions for members and moderators so it felt important to start by clarifying these roles.
Building on existing knowledge
Charities like YouthNet (who were pioneers of online peer support) and Mind (whose Elefriends community grew quickly and organically from a Facebook group) saw their moderation strategy and structure grow and develop with the needs of the community. They were often exploring new ground and didn’t always have examples of how a particular approach had worked in the past. You can see this learning in practice in a post about training community members from 2012.
Now online peer support is offered by many charities. It is easier for those looking to establish a new service to understand and clearly define these roles early on. But it’s always important to make sure that there is room for consultation, change and development as the needs of the community become clearer. The most successful communities are co-designed and developed with community members wherever possible.
I’ve just finished 9 months working on the mental health peer support community Elefriends. The role was a maternity cover post and focused on community engagement as well as moderation training and support.
So what did I get up to?
I organised and co-facilitated six co-design workshops with community members and local Minds. All the workshops had an online consultation component.
This quote was one of many we gathered from young women we spoke to during the youth project consultation process I ran for the Miscarriage Association. It highlighted the need for additional support resources that reflected the experiences of younger people.
Young women told us about dealing with miscarriage after an unplanned pregnancy, finding themselves isolated and unable to speak to parents or partners, turning only to friends for support and experiencing difficult reactions from hospital and nursing staff.
And now I’m excited to help the Miscarriage Association launch the resources we developed as a result.
It seemed appropriate to soft launch the resources at the Primary Care conference in Birmingham. It was here, last year, that community midwives and school nurses asked for more specialist resources for younger women. The Miscarriage Association’s National Director Ruth, some wonderful volunteers and I spent two days spreading the word about the Miscarriage Association and sharing our new resources.
They were universally well received and we sent boxes worth of leaflets out into the world as well as showing our new films (created for us by Rob Mitchell of MadCutta films) and chatting to anyone who would listen about what we were up to. It was wonderful to see how many people benefitted from the work the Miscarriage Association does – professionally but also in some cases personally.
“I’ve honestly literally never spoken about my experience with anyone since I left sixth form, this is the first (and possibly last) time – but I’m happy that I’m using it to hopefully help others”
I was recently approached by the Miscarriage Association to help them research and develop youth friendly online (and possibly offline) resources. Young peoples’ voices are missing and their needs are not being fully met by the Miscarriage Association’s current offering. But before we decided what to develop, we needed to do some research to find out a bit more about what young people were experiencing, what they want and – most importantly – why they want it.
Knowing WHY helps us get a deeper understanding of the need. Knowing that a young person wants online videos is one thing, knowing that they want them because they feel alone in their experience and want something to help reduce this isolation is much richer information. If we know this, we are in a position to find the very best way to meet this need.
Our hope was that the young people we worked with in this research phase would become engaged enough to stay involved and work with us through the development phases too.
Our first step was to approach Brook. We’d identified that they had little online information about miscarriage and knew that for many young people Brook would be the first port of call when they needed help with pregnancy loss. Brook are redeveloping their website and resources so it made sense to work in partnership to share learning and ensure that young people were supported at every stage of their support-seeking journey. Continue reading