Tag Archives: Online Support

Community development and management support for Contact a Family

 

Contact a Family got in touch late last year. They were looking for help setting up their new community, developing guidelines, establishing processes and training new moderators. Over the last few months I have been working closely with them and we’re almost ready for launch.

Scoping

I spent some time on scoping work – reading existing research and interviewing stakeholders throughout the organisation. This helped me understand the different requirements for the community and develop a proposed action plan.

Online consultation

Contact a Family had done some extensive research on their digital offering more generally but I wanted to do some more consultation work with potential community members.

We chose an online consultation as this was felt to be more accessible to parent carers who could sign on at any time on each of the three days of the consultation. It also enabled us to involve parents from all over the country.

Contact a Family had chosen the community platform they would like to use so I was able to set up the consultation on a basic version of the new community. This gave parents a chance to offer feedback on the platform itself and helped to familiarise them with the site.

77 people expressed an interest in the community consultation and development. We had 26 participants in the consultation workshop, giving us 228 comments and answers to our questions. Lots of participants volunteered to stay involved, give feedback on developments and form a ‘welcome committee’ when the community launched.

The consultation took place over three days.

On day 1 we asked about what different people want from an online community, their priorities and what would put them off.

On day 2 we asked about moderation and guidelines – how we can keep the community safe without stopping people from having the discussions that help them.

On day 3 we asked participants to have good look round the existing set up and think in more detail about specific groups of users – parents of children with rare conditions, people running or looking for support groups and parent carer forum representatives.

Thank you, I’ve really enjoyed being part of this new venture and it would be a pleasure to be on the welcoming committee.

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Thinking of recruiting volunteer moderators for your online support community?

More and more charities are setting up online support communities – a space online for people who use their services to come together and share information, offer support and help each other to feel less alone. It’s almost expected now – if you don’t have a space like this, you may find people use your Facebook page or other social media pages to ask questions and support each other.

Communities are an excellent way to increase reach, help people connect and improve outcomes. Online community members (especially those who are established and ready to ‘give back’) are often more engaged with the charity and more likely to take part in focus groups, respond to surveys and even fundraise.

The need for moderation

But online communities need to be monitored and moderated. As an example, I recently conducted an online consultation for a charity in the process of setting up a new community. Participants identified a number of issues they had come across in badly moderated or unmoderated communities.

  • Posts going unanswered – or answers being unbalanced with some people getting lots of responses and some people getting very few.
  • People feeling unwelcome or overwhelmed.
  • Posts being misinterpreted or misunderstood.
  • Spam and trolls.
  • Personal attacks.
  • Judgmental or critical posts.
  • Incorrect information and advice.
  • Competition and comparison.
  • Arguments that become too heated.
  • Detailed discussion of suicide or graphic posts.
  • Inappropriate sexual content.

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Writing to the Information Standard for Mind and the British Lung Foundation

screenshot-2016-11-23-19-14-26If the events of 2016 have told us anything, it’s that people can write any old rubbish and post it online as fact. And people will believe them. Especially if those people are vulnerable or anxious.

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.

Reliable, balanced, current and evidence based information

The Information Standards recommended search hierarchy.

The Information Standard’s recommended search hierarchy.

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.
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An introduction to community moderation

Screenshot 2016-03-09 21.19.12

Every community I’ve worked on has been set up slightly differently

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.

What is the problem? Why? What is your experience?

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.

co design

 

What is community moderation?

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.

What kind of moderation do we want?

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.
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APP’s online peer support services: vital and life changing

“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.”

APPLast Saturday I was invited back to run a third online peer support training session for Action on Postpartum Psychosis’ peer supporters.

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.

Online peer support that connects those who’ve been there

Research by APP shows that women desperately want to meet other people who have been APP trainingthrough 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.
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New youth resources for the Miscarriage Association

“People said it was lucky really. I don’t know how to deal with that”

This quote was one of many we gathered from young women we spoke to during the youth young girl with bookproject 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.

A soft launch at Primary Care 2015

It sMA stall at Primary Careeemed 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.
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Take 5 to blog for Time to Change

Time to Talk for Time to Change

Today is Time to Talk day. Once again the Time to Change campaign is encouraging people to take some time to break the silence that so often surrounds mental health problems and have a conversation with friends, family or colleagues. Or, in this case, the internet.

#Take5toBlog

So here’s my 5 (ish) sentence blog.take 5

My name is Clare and I have experienced depression and anxiety. It’s made worse by my errant hormones. I’ve been on Citalopram since I was 17. I’m trying to come off them now but it’s HARD! I have stalled at the 10mg mark but will be reducing in tiny tiny instalments again soon (when I’m feeling strong and the spring sun starts to shine).

My mental illness has affected my education – I had to repeat a year of university – and my relationships. Before Alex, pretty much all of my serious relationships ended because of my mental health.

My greatest source of support has been my boy Alex. He also manages anxiety and that shared understanding helps us care for each other. I’m also lucky enough to have supportive friends and family, many of whom also experience mental health problems of their own and to whom I can talk openly. There were times when I couldn’t make sense of my experiences in my head or out loud and then my journals and writing kept me going. I wrote to them like a friend.

I’m deeply aware of how fortunate I am to have the people around me I do. I’m thankful for them every day. My hope for the future is that everyone is able to find that network of support. A lot of the peer support work I do online is motivated by the desire to help people build that.

I’m taking 5 on Time to Talk day because I’ve found that being open and sometimes vulnerable in the world helps others be the same to me. And if I can help someone take that very first step to seeking help, to feel the relief of sharing and normalising their experiences, I will. Every time.

Developing youth resources with the Miscarriage Association and Brook

Stage 1 – Online and face to face workshops with young people

“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.

Working in partnership

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

How do you run a good training session in an online chat room? 17 tips and ideas.

youthnet volunteer network

Last night I ran an online training session for YouthNet’s chat moderator volunteers (I’ve written a post about what is is like to moderate real time support chat for young people here). We all joined a chat room in YouthNet’s online volunteer community for an evening session.

The focus of this chat was talking therapies – learning more about them and sharing knowledge as well as discussing how they might come up in support chats and what we, as moderators, can do to make sure the young people who come to the session get the right information.

Good practice for running a training session in a chat room

Using a chat room for training sessions enables you to have more real time discussion. It Screenshot 2014-01-31 13.19.21brings everyone involved in a project or role together at the same time. It’s particularly useful if those being trained are spread out around the country. Some of the things I’ve learnt from running online training chats include: Continue reading

Guardian Voluntary Sector Network Xmas Volunteering

Representing online volunteering in the Guardian

Just before Christmas I wrote a piece for the Guardian on why I volunteer at Christmas. It was a pic of Xmas volunteering piecepersonal explanation of my motivation to volunteer, why I’ve continued to do so since leaving YouthNet and why it’s particularly important at Christmas.

It was one of a series on Christmas volunteering. It was the only one about online or virtual volunteering. I’m glad it was represented  – I’ve managed online volunteers for many years and have seen it becoming increasingly popular, especially in support work. I wanted to explain in a bit more detail how it can have as much, if not more, impact as your more traditional face to face volunteering.

A more detailed description of what running a live support chat is actually like can be found here.  Here’s some more info on the volunteer role I managed for five years – online peer advisors. If you’d like to chat support volunteering, virtual volunteering, training volunteers and giving peer support online, drop me a line.

Now I’m off to open up TheSite.org chat room for another Sunday support session.