Author Archives: fostress

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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5 star review for Miscarriage Association training materials in RCOG’s journal (TOG)

 

Learning materials for health professionals

I was really chuffed to hear that the Miscarriage Association learning materials for health professionals were given a 5* review in the Royal College of Obstetricians and Gynaecologists’ journal The Obstetrician & Gynaecologist (TOG). I did a lot of work on these resources and it’s brilliant to get such positive feedback. Can’t say it better than Kath Evans from NHS England who partially funded the resources…

 

Signs of change and coping with cheese – how my eating disorder recovery looks now

vd9j4ghMental health problems have a way of taking over. I’m lucky enough never to have been hospitalised or signed off work. Life has always stumbled on. But moods and behaviours creep in and twist their tendrils around daily life. They trick you into thinking they’re normal, into nourishing them. It’s not until they start to suffocate and strangle even the simplest of things that you recognise their power. And then it’s too late for an easy fix.

This year I’ve started the long process of hacking away at the thicket and pulling up roots that go incredibly deep. It hasn’t been easy. But now I’ve made some space it’s much easier to see what a tangle I was in.

Eating new food

I recently turned 33 and enjoyed a breakfast made for me by Alex without having to purge it through exercise.The day before my birthday last year I was panicking over choosing something nice (and therefore different) for my birthday breakfast. I cried outside the bread shop. I ended up with toast and even then it was a tricky day.

Letting go of control in the kitchen

I no longer have to have control in the kitchen. I’ll eat something made for me by someone else – even if I didn’t see whether they used butter or check how much oil they added.

Reaquainting myself with cheese

I had cheese on toast for the first time in two years last week (cheese has been a scary food for years).
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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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Recovery is long, messy, uncomfortable and emotional – but i’ll keep trying (and talking)

Glad to have an eating disorder?

I'm not linking... but you can Google...

I’m not linking… but you can Google…

Apparently Liz Jones is glad she has an eating disorder. In her latest piece for the Mail, she tells us that recovery is so hard that it’s easier not to try. She’s lived with an eating disorder for so long that she’d rather take refuge in behaviours that feel safe than deal with the messy and fluctuating business of balanced eating.

She’s lived with an eating disorder for so long that she’d rather take refuge in behaviours that feel safe than deal with the messy and fluctuating business of balanced eating.

Yes, recovery is bloody hard work

She’s certainly right about that.

If you’ve lived with a restrictive eating disorder then gaining weight is quite literally your biggest fear. Recovery means choosing to face it and having the courage to live with it every day. It can be weeks, months or years before it stops being scary and difficult at least some of the time.

Food isn’t just nourishment. It’s both punishment and reward. It’s at once the scariest and the most important thing. Recovery means learning to manage this complex twist of emotions at least three times a day. Forever. It means dealing with other people’s opinions and comments on your changing body.

You’ve probably developed tests and checks to make sure your body is ‘right’ – restricting or purging until you ‘pass’. Recovery means ‘failing’ those tests without spiralling into self-doubt and recrimination. Hundreds of times a day.
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Strong, powerful, upsetting, thought provoking and with important teaching points – developing Miscarriage Association learning resources for health professionals

Sorry about the picture on the left....

Sorry about the picture…noone wants Trump on their blog…

Skimming through the British Medical Journal, I came across a blog called Breaking bad news in maternity care. It’s a lovely piece about the new learning resources I worked on with the Miscarriage Association.

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.

Research

  • I created a short survey for women and their partners. It asked them the top three things they would like to tell the relevant health professional about their care – and had a free text box too. In the BMJ blog Mary Higgins writes ‘what I say will be remembered for the rest of their life’. And it’s true. Most women who responded remembered exactly what they were told – good or bad – even after 10 or 15 years. It’s so important to get it right.
  • I also surveyed health professionals to find out what they and their colleagues found hardest about these situations and where they would like more training.
  • I wrote a report on each of these six areas, identifying key learning points and pulling out quotes and experiences we should highlight.

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Unwanted pregnancy far outweighs any side effects of contraception? How dare you say it’s that simple!

Women on hormonal contraception are more likely to be treated for depression

fullsizerender-1Recent research has shown that women taking hormonal contraception are more likely to be treated for depression. And we already know that those with pre-existing depression may have their symptoms worsened by the pill.

Tell us something we don’t know.

I’ve avoided hormonal contraception completely since a devastating experience in my teens. Mood changes are the top reason why people discontinue using the pill.

But some of the responses to this research have made me pretty angry. I’ve been trying to make sense of why for the last couple of days. Maybe this is really obvious stuff. But maybe it needs to be said again and again until people start to listen.

Unwanted pregnancy far outweighs ALL side effects?

The worst comment I‘ve seen is “avoiding an unwanted pregnancy far outweighs all the other side effects that could occur from a contraceptive”. That’s the sort of thing someone who hasn’t experienced depression might say. I wonder if an equally debilitating (and potentially life threatening) physical health problem would be treated so casually.

I was prescribed the combined pill in my teens with no guidance, no discussion of side effects and without being offered alternative options (I wrote about it in an old blog post here).

The causes of mental health problems are complex and under-researched – but I’ve always felt that the six months of desperation, confusion and trauma I suffered before realising the pill was to blame was the start of long term problems with depression and anxiety. I still occasionally have nightmares where I’m trapped in that time and those feelings.

I had an abortion in my twenties. Unwanted pregnancy can be awful (and can be associated with an increased risk of mental health problems too). But the mental health consequences of getting medication like hormonal contraception wrong can also be devastating – and can last a very long time.

When I posted these thoughts online, others immediately agreed – “Yes, yes, yes! I’ve had both an unwanted pregnancy and a termination and long-term mental health problems aggravated/caused by the pill. And it wasn’t the first one that was more traumatic and terrifying”.

I feel the need to clarify that I’m not suggesting people have terminations instead of taking the pill – but that I need to do this at all just shows how reductive the discourse on this topic tends to be.
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A letter to Incognito about OCD

Hey Incognito,

screenshot-2016-09-18-11-38-21You probably haven’t thought it through – and I’m sure you don’t mean to cause offence – but I wanted to highlight some of the problems with your OCD Hand Sanitizer product and the accompanying text.

OCD is an incredibly debilitating mental health problem. So much so that the World Health Organisation ranks it in the top 10 disabling illnesses (both mental and physical) in terms of lost earnings and diminished quality of life. Yet it remains one of the most misunderstood and trivialised of conditions.

I’m so OCD” or “I’m a bit OCD about that” has become shorthand for “I like things to be clean” or “I like things in the right order”. Comedians joke about it. We’ve all seen a picture on social media of some slightly misaligned objects with the caption ‘This is sending my OCD crazy’. Products like this perpetuate those myths.

Jokes and misunderstandings trivialise OCD

OCD gives people constant negative, repetitive and intrusive thoughts, combined with an ongoing feeling of doubt or danger. These are the obsessions. Compulsions develop to try and quell the thought or quieten the anxiety. They can be things like repeatedly checking a door is locked, repeating a phrase over and over again in your head, checking how your body feels, cleaning or repeatedly asking for reassurance. The relief caused by completing a compulsion is usually short lived and before long the anxiety and mental discomfort caused by the obsessions and doubts rises again.

You can get stuck in an exhausting cycle of rituals and often choose to avoid places or people that may trigger their obsessions. Your day to day life is disrupted and relationships may be strained to breaking point.

Intrusive thoughts can be graphic, violent or scary. You may be very ashamed of these thoughts and spend a long time checking whether they might still be there and how you feel about them  (for example ‘am I still appropriately upset by them?’). You may feel the thoughts mean there is something ‘wrong’ with you as a person – and don’t feel able talk about them or ask for help for a long time.

Every time someone says “I’m a little bit OCD” , shares an OCD joke on social media or sells a product that makes light of it, they add to the impression that OCD is trivial – even a bit comical. This makes it much harder for people to seek help or even open up to their friends and family – and for research and support services to get their share of limited funding.

Imagine if you had to explain to friends and family what cancer really was, how it affected you and that it wasn’t an amusing or comical condition. Imagine how isolating it would be if they still didn’t really understand or made conscious or unconscious judgements about what it ‘really’ was based on jokes and viral pictures on social media. Imagine if shops sold joke ‘cancer hats’ which you could put over your own hair to look as if you were having chemotherapy.

Misinformation stops sufferers seeking help

It already takes an average of over 10 years for people with OCD to seek help. Often that’s because they don’t realise that they have a recognisable condition with potential treatment options. If you’ve always been led to believe that OCD is just a quirky approach to being clean and organised then you might not realise that the intrusive thoughts or crippling doubts you’re constantly fighting are also OCD.

Language is a powerful thing – even small everyday comments, ‘funny’ product descriptions and cheeky ‘likes’. Let’s use it to learn more, to support others and to fight stigma and misunderstanding rather than perpetuate it.

Please consider reading a little more about OCD and removing this product from your shelves.

Thank you,

Clare