Tag Archives: Peer 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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Community moderation training for OCDAction

Last week I ran a session on community moderation for OCDAction.OCD action

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.

Moderator skills

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:

  • emotional support and empathy
  • good comprehension and listening  through language
  • communicating effectively through the written word
  • resolving conflict
  • understanding and respecting boundaries
  • courage and assertiveness
  • a good knowledge of OCD and a genuine desire to help

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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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Setting up a new community – defining roles in moderation and peer support.

Consultancy for The Katie Piper Foundation

Katie Piper FoundationIn 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.

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Engagement, co-design and community moderation on the Elefriends community at Mind

elefriendsI’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?

Six co-design workshops with community membelefriends co designers

I organised and co-facilitated six co-design workshops with community members and local Minds. All the workshops had an online consultation component.

  • Two workshops to co-create community content and ‘themes’ functionality for Sport England funded project Get Set To Go.
  • co designTwo workshops to co-create community content and functionality for Big Lottery funded peer support project Side by Side
  • Two workshops to co-design a mobile app for the community. The Apple version is in the app store now.

I worked with agencies PAN and Yoomee to create and test content and functionality initially developed in the co-design workshops.

This included three animations to encourage community members to get more active. You can see the first one here.
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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.

Moderating real time support chat with TheSite community

What does moderating real time support chat online for 10 – 25 young community members involve?

thesite.org

Support chat

Every other Sunday I moderate support chat on TheSite.org. TheSite runs a number of types offostress meet the moderator chat – I’ve also been an expert for their recent Mindfulness chat. I used to do moderation as part of my role as Advice and Training Manager at YouthNet – but since leaving I have continued in a volunteer capacity.

Support chat is the most common type of chat. For two hours, four evenings a week, the chat room is open for anyone to sign into. Usually it’s community members who come along (young people who are regular chat and discussion forum users) but sometimes it’s a gateway for new people to discover TheSite’s support service. Chatting in real time helps to strengthen the community who gather around the discussion forums. And sometimes regular forum users come into chat under a different name to discuss a more confidential issue.

Support chat is a group peer support space. It allows young people to chat in real time about their difficulties, get peer support from others and give people the benefit of their own experiences and suggestions. Sometimes it is a space for chat and distraction.

It’s a non judgmental and safe space. It is the role of the moderator to keep it that way – even when it gets very busy. Sometimes the chat transcripts can run to 80-100 pages when downloaded into Word. That’s a lot of support for an evening. In general there is a strong focus on managing mental health and wellbeing, although lots of other topics come up too. These can include friendships, relationships, self harm, accessing health services, school and college, online dating, bereavement, music and X Factor (to name a few!).

A moderator’s role

As a moderator I will be ensuring that everybody in the chat gets support and noone is ignored. This can involve offering suggestions and signposts or encouraging others to offer peer support. I am not there as a counsellor and would never diagnose or tell someone what they should do. Instead I am there to facilitate peer support, to give young people the space to talk and help them decide what courses of action are right for them. Continue reading

Online peer support training with Action on Postpartum Psychosis

Running a training day for volunteers working on a new online peer support service for APP

I was really pleased to be asked to help out with APP’s new online peer support programme.Action on Post Partum Psychosis logo

APP has been funded to provide peer support to women with postpartum psychosis and their partners. They have been running an online forum for over a year and are now looking to expand their offering to one to one email peer support. Women with lived experience of PP will be trained to offer email support to women who are in the early stages of recovery.

Benefits of online peer support

One of the real benefits of online peer support is the fact that people are able to find, connect and talk to people with experiences similar to theirs from all over the country, or indeed the world. It’s reassuring to find out you are not alone and helpful to hear how others coped in similar situations.

This is particularly relevant with postpartum psychosis. Many women may not know anyone else in their area that has experienced it. Often, even if there were someone, that person may not feel comfortable talking openly about it. This service will enable women to find support and reassurance from someone who knows what they are going through.

It also sounds as though many men whose partners get PP have no idea where to turn. They often try and support their partner in hospital alongside holding down their job and caring for other children. They often feel they need to be the ‘strong’ one – and disregard their own emotional needs. While the one to one support is not yet available to them; partners looking for support regularly use the forum.

Peer support in the training room

Like the Elefriends mental health community meet up, there was a lot of peer support in the training room. Unlike the Elefriends meet up, many of these women had never met someone who had experienced PP face to face before. This gave the whole day a really moving and inspirational feel. Continue reading

Online consultation with Mind’s Elefriends community

I first came across the Elefriends community after attending their online peer support training.Screen Shot 2013-10-29 at 15.21.24 I was interested in online peer support for adults and wanted to find out more about the impact of providing community members with peer support training. How does this affect their experience? I wrote about this training here.

Online community consultation

I really enjoyed working with both the community and the digital team at Mind so I was really pleased to be asked to do some consultancy work for them. At the time, Elefriends was moving from a Facebook page to a new platform. The team were looking to consult with the community both on and offline. This was to ensure that as many community members as possible got a say in the changes.

I attended the offline consultation days and then based on my discussions with community members I:

– Designed a three day online consultation to gather community members’ views on how the site should be managed
– Used interactive tools to keep the group engaged, and provided support to participants throughout the exercise

Recommendations, moderation guide and evaluation

I summarised the findings, to produce recommendations and draft guide for community managers

I also helped the team design an evaluation survey for their funders, which looked at how community members used the site to better manage their mental health.

At times, the consultation touched on sensitive issues, including the expression of thoughts of self-harm and suicide. Clare’s understanding of mental health, empathy and respectful approach has been a real asset to this project and I look forward to working with her again.

Eve Critchley – Senior Digital Officer at Mind