Is your content compassionate, or condescending?

I recently had a few weeks away from work for an operation. In the run up, I had some serious struggles finding information. Most of it didn’t relate to me, or my particular scenario, and a lot of it was inconsistent, for example:

• “You will be back to normal within a few days”, or
• “It can take up to a month to return to your normal duties.”

Or:

•“Avoid exercise for 6 weeks”, versus
• “Keeping active can help your recovery.”

But even more annoying was the language that was (sometimes) used to describe what I was feeling physically, before and after the procedure.

One article suggested my condition might cause “bothersome symptoms” and a “dull and aching” pain. It said “self-care measures like using a heating pad and taking a relaxing bath can help relieve any discomfort.”

Reminder: this is a condition that several medical professionals have decided needs to be dealt with through surgery. But let’s look at that language.

“Bothersome” suggests it’s a bit of a nuisance, maybe like an insect bite. “Dull” pain also reads like something that can be ignored and shouldn’t cause that much bother. It then suggests this is something I can manage myself with a bit of self-care. Maybe light a candle and have a nice bath and I’ll be good as new.

^^ This article was written by a medical professional. And I don’t think they meant to annoy their readers (maybe just me). I think they were trying to be compassionate and reassuring.

So why doesn’t it work? And how do we do better?

1. It doesn’t use the language its users use

“Dull,” “aching”, or “bothersome” are not how I’d describe my symptoms. And they’re minimising. How do people *actually* describe it? What words are they using? (Reddit was full of information, and descriptions, that matched my experience. But Reddit should not replace medical advice!)

2. It tells me how I feel

Don’t tell your audience how they feel. You may get it right, but if you don’t you are immediately creating a barrier, and a reaction, with your users.

This applies in all kinds of contexts. I worked on a service for people whose parent or partner died. Our instinct was to start letters with a line of condolence. But actually, a lot of these relationships were complicated (as all are!). “We’re sorry to hear your father has died” might not build rapport with someone who has a lot of complicated feelings around their parent’s death.

3. It’s inconsistent

Being inconsistent makes your user question the information and builds distrust. This author isn’t responsible for all the inconsistencies I found. You can’t control all the pieces of information in your user’s journey, but you can control what’s in your content. Use the same language and give the same information throughout.

I understand the desire to be compassionate, but always check: does your content sound kind, or dismissive? Caring, or condescending?

And the best way to check: test with real people.

[this post does not contain spoilers!]

“You are Here” is a lovely, readable book with a nice big font. 2 characters talk about loneliness while walking across the north of England. I recommend it for some summer reading, but that’s not why I’m talking about it.

About halfway through the book, I came across this exchange. The characters (A and B) are talking about a (physical) fight that happened:

A: “Can I just reassure you [it] was not your fault.”

B: “Well, you say that…”

A: “You were traumatised.”

B: “I wonder if people use that word too much.”

A: “It’s the right word for something traumatic.”

B: “But it wasn’t war. People get beaten up every Friday night.”

A: “And are traumatised by it.”

B: “Maybe.”

This little exchange illustrates one of the biggest challenges I find when I talk about trauma.

For many people, trauma is linked to war. PTSD in its earliest form was called “shell shock”, and is still most associated with war veterans. And so often, other events are considered not traumatic enough to be called such. I often find people do not associate with the word trauma for the very reasons this exchange suggests.

It’s for this reason I often talk about stress, anxiety, and trauma together. People don’t associate their feelings with trauma, but seem to relate more to stress and anxiety. When we do use the word it’s often almost flippant: “I was traumatised by the spider in the bathroom.” “When Felicity cut her hair, that was traumatic.”

But trauma is not just war. It can come from a range of events and circumstances and it’s the impact of those events that matters.

As content designers, we can’t decide what is and isn’t traumatic for someone. We can’t think these principles apply only to war or “big events”. We have to take care with our design at all times, and consider what we can do to help keep our users safe.

*****

For some tips on applying trauma informed principles to content, check out my blog post on the Content Design London blog.

My child had been unwell for a few weeks. A headache, a fever, some random aches. With the GP closed for the holidays we went into A&E. A few hours later an x-ray revealed a large “mass” in their chest, and multiple other “lesions” (these, I learned, are considered less scary words for tumours).

What followed was the worst time of my life. We went through one traumatic experience after another, spending weeks in hospital as I watched my child endure intense chemotherapy.

When we think about trauma informed content, we’re often talking about avoiding retraumatisation. We are considering people who have been harmed in the past, and we want to avoid causing further harm.

But are there different content needs for people who have gone through trauma and people who are going through it? What can we do for people at the time of the crisis?

In my experience, the most important thing is clarity. Short, easy to read sentences and lots of white space meant I could actually take information in. Long pages of paragraphs were left unread, or read without understanding. I didn’t watch videos — too long, too difficult to find the space and both the literal and mental bandwith. Plain text was the best option.

So was clear, directive language. When a website told me that, to apply for X I had to do Y, I was appreciative. It took the mental load away from me and told me what I needed to do. There’s often a perception this kind of language is at odds with a trauma informed approach. It isn’t.

I learned what it’s like to try and take in information in times of crisis. I called friends to google things for me because I couldn’t face pages of search results and my child needed pyjamas. I took constant notes, and asked the same questions over and over because I needed to hear the answers more than once.

Support options were welcome but went un-used. I didn’t have the time, space, or energy to speak to someone on a helpline. Nor did I have the energy to engage in forums, although I know many parents found them helpful. And if you had asked me what support I needed — as many people did — I couldn’t have told you. I knew I needed something, but I didn’t know what that was.

A lot of focus is given to content warnings, and whether they work to prevent further harm. Arguably no other trauma informed content element gets the same attention. But in the time of trauma, a content warning is little help. But the closest I found was around information about cancer survival rates. This was always heavily prefaced with an explanation about the limitations of these figures. Often the statistics were published on another site. I chose not to look at them.

Now, 6 months later, my child is in remission. They will be closely watched, but for now we are all working on healing.

As we move from the time of trauma to post-trauma, I have new feelings and I carry some of the old. Some things hurt. But I can read more. I have more space to think. I’m taking up some of those support options. Some of the trauma we went through may not heal — at least not straight away.

As life changed, so did my needs, and so do your users’. So, a double ask for people creating content: consider a trauma informed approach. But also consider what people need at the time of crisis itself. Are they the same?

A final note, unrelated to anything content. It’s amazing how quickly things can change. These past 6 months have lasted at least a decade. Science is amazing. Doctors and nurses are amazing. People are amazing. Thank you all.

“Trauma” comes from the Greek for wound. In some cases, the wounds are obvious. But more often they aren’t.

There’s sometimes a perception that trauma is reserved for certain things: war, death, the kinds of disasters you see on the news. But often there’s trauma that’s harder to see.

The past few months, I’ve encountered a lot of wounds. As I watch my child go through cancer treatment, there seem to be endless painful moments.

Not all of these wounds stay open. Some of the experiences we’ve had I can think back on and feel like they’ve healed. Others I know are open and will take time and help to close.

The thing is, these open wounds are not necessarily the ones I might have guessed would be hard to heal. And the things I find “triggering” are not always the ones that someone else would expect. To give you one example: Christmas.

My child was diagnosed on 2 January. Christmas was safely out of the way. And yet when I think about the holidays my stomach tightens, my head spins, and I feel a sense of panic. No longer a longed-for break at the end of the year, I now feel anxious just thinking about December.

If you were creating content around childhood cancer, how could you design for this? How would you know this? Is it a common experience, or just unique to me? How could you use trauma informed principles here?

The most important thing is to do your research. Without speaking to people who know, you risk assuming or relying on empathy. Empathy can only take you so far — everyone who experiences trauma may experience it differently.

A quick fix might be to apply a content warning. But it’s not going to help me to know that something mentions Christmas. A trauma informed approach to content is not just about avoiding specific words, or using a content warning as a fix-all.

To take a trauma informed approach all the principles have a part to play.

In this specific case, one thing that has helped me and given me comfort is a book by the Children’s Cancer and Leukaemia Group (CCLG). It talks about anxiety around specific dates:

“Anniversaries of the time of diagnosis or finishing treatment can make whatever emotions you feel more intense, and for many that’s a mixture of sadness and joy. In time many parents find that they can reach a balance between being grateful that their child is free from cancer and the sadness over the inevitable losses that the experience has brought.”

This piece of content shows me collaboration: other parents have shared their experiences, and now I don’t feel alone. The fear and anxiety I feel is shared, and knowing that makes me feel a bit better.

If you’re creating content, remember you can’t always know where the wounds are. Even if you do, you may not be able to heal them with your content alone. But you can always try to avoid causing further harm.

For a reminder of the principles and how to apply them to content, here’s a blog post I wrote last year.

What do you think of when you think of ‘service’?

Since you’re reading this on my linked in page, I’m guessing you probably think about service design. You’re maybe remembering a big map on a wall with post it notes on, marking users and comms points and different entry and exit paths.

But “service” has a lot of definitions. These include:
• acts of assistance,
• periods of employment,
• pieces of work done for a customer,
• systems supplying a public need,
• religious ceremonies,
• routine inspections (like for a car),
• actions to begin play (in tennis),
• formally delivering a document.

(Thank you Merriam Webster.)

But there’s another meaning of service:

“The action of helping or doing work for someone.”

I’m currently spending most of my time in the arms of the NHS, or National Health Service. And this week, as I was making a cup of tea on the ward, I noticed a sign on the wall:

“How are we doing? We would like to know what you think of our service.”

Our time in hospital has been full of acts of service. People properly caring and helping. Some of the things nurses have done for us and their other patients move me to tears. The service we are receiving right now feels personal, caring, and thoughtful.

I have a feeling if I went onto their survey it would ask me about levels of cleanliness on the ward, and catering options. Would it ask me if I felt people were doing the hard work to make things easier? Would it ask if I felt helped and supported?

What am I getting at? A good service has “the act of helping or doing work for someone” at the centre of it. A good service creates the feeling that you’re part of something that cares for you and that is serving you.

Can we put that into the services — and the content — we design?

Content can’t fix a bad service.

I’ve been applying for disability benefits for my child. The application is long, detailed, and horrible. I’m lucky that I have someone going through it with me to help me complete it. However, even that means multiple hour-long phone calls going into detail about what my child can no longer do and the care they need.*

It’s awful, and it’s upsetting.

I told my mum about it and she said, “They need to hire a content designer!”

And I was delighted that at last my mum understands what I do for a living! But I had to tell her that actually, this service did have content designers. Really good ones. And they had put a lot of effort into making the form clear and helpful. It wasn’t their fault this was such a struggle.

The problem was that I can’t just say “my child has cancer and needs constant help and support.” I have to go through section after section about how they move outdoors, what medication they need and when, and their mental health.

And I can’t just say “they get tired easily.” I have to use words like “fatigue”, and understand the difference between that and “tired”.

There’s no section on the form for me to say that my life has changed completely, and I need help and support.

The content designers have done a brilliant job with what they had to work with. But so often it’s the policy itself that needs to be looked at. By the time service designers and content designers get involved, there’s only so much you can do.

You can’t fix a service with content design.

Content designers regularly plead to be involved earlier — at discovery, or even pre-discovery. I used to work on parliamentary inquiries and wrote recommendations in reports that often ultimately formed the basis of services. But I did so with very little understanding of user centred design. Now, it’s a dream of mine to train people who run consultations in content design, user research, and service design. Can you imagine what user-centred designers could do if they were involved at the very, very beginning?

For now, I keep going with that massive application (still not done, 3 weeks on). And I thank the content designers for the moments of kindness they have put into their work. They’ve done their best with a service that is less than perfect.

*I have to recognise there are people who have much harder, longer, and upsetting struggles with benefits than I do. There are also far too many people who don’t get the support they need to go through the process. I’m new to this, which brings its own issues, but these in no way compare to the challenges of others and I am certainly not an expert at the struggles of applying for benefits.

You may have heard the phrase, “When all you have is a hammer, everything looks like a nail.” It is used to mean that someone with limited tools sees every problem as something that can be solved with that instrument.

But I’ve been thinking about it differently. When something happens to change your life context, suddenly you see everything through that new lens.

An example: on the top floor of the Children’s Hospital where I spend most of my time just now there’s a family sitting room. Parents go there to make a coffee, watch TV, or just have some quiet space. I was in it one afternoon when a “new” parent came in. She was clearly just getting used to hospital life, so I showed her where the milk was kept and how to use the kettle.

We started chatting a bit, and then she asked me, “So has your child just been diagnosed with diabetes too?”

“No,” I said, “Cancer.”

Which to be honest, is usually a bit of a conversation killer. But we got through it and had a lovely chat before we both went back to our separate wards.

What struck me is that we were in this big hospital, where children are treated for all sorts of things. Despite that, this parent’s first thought was that we must be in the same boat. Because when something overwhelming and life changing happens — your child gets diagnosed with diabetes, or cancer — your world shrinks. The lens through which you view the world becomes different, if not distorted.

Now when I’m out of hospital and I see a young person with headphones on, I immediately think it’s their feeding tube. I see a stroller and I think wheelchair. Suddenly all I have is a hammer, and everything is a nail.

What does this mean when you’re designing content?

People want to find themselves in your information. This is even more so when they are stressed and dealing with something difficult. You can’t possibly create content that meets everyone’s unique needs. But you can:

• guide someone towards the parts of your content that are relevant to them. Use headings, logical structures, and tags so someone can find the information they need and ignore the rest.
• consider your user journeys. It’s unlikely your content will be a stand-alone piece of information on someone’s journey. Where do you fit in? Where are you sending them next? What can you do to make their journey smoother and simpler?
• signpost elsewhere. There’s no shame in not meeting everyone’s every need. Sometimes you might not have the information someone is looking for. If so, let them know. Pointing people to the content they need is much better than writing generic content that doesn’t meet anyone’s needs.

Sometimes when all someone has is a hammer, they’re looking for a nail. And that nail is what they really need. Help people find it, or tell them where they can get it.

This week in hospital life I’ve been thinking about questions.

I get asked a lot of questions just now. Doctors, nurses, but also friends and family. Some can be answered without much thought: what has your child had to eat today? Are they feeling sick?

Others require more thought, and energy. One question I find impossible to answer just now is “how are you doing?”

Questions add cognitive load. But they can also add emotional load. To answer that well-meaning question is near impossible, let alone trying to do it on a tiny screen on my phone in snatched minutes.

One of the things I tell people when I talk about designing for stress, trauma and anxiety is to look at the questions they are asking.

The easiest thing to do to reduce the mental load on someone is to take unnecessary things away. Words, visual noise, and any demand on them that you don’t need. Do you need to know their middle name? Their date of birth? Their title? If you don’t, don’t ask.

When you do need to ask a question, help someone answer it by giving tips or guidance on the sort of answer you are expecting. If someone needs to use a certain date format, or answer in a certain way, don’t assume they will get it right unless you tell them. Make it as easy as possible for someone to get through your questions quickly and easily.

Questions to ask before you ask questions:
• do you need to ask this? Can you say why? If you can’t confidently answer yes to both, don’t ask.
• is there another way to get the information? If there’s an easier way, use it. And easier means for the person answering the question — not the organisation asking it.
• can you help someone answer the question? Give guidance on formats, the types of answer you’re looking for, or what to do if they can’t answer. If someone can leave the information out, let them know.
• do your questions duplicate or repeat? If so, can you remove or consolidate your questions?

Finally, get rid of the idea of “easy” questions. In the same way I currently can’t answer that well-meaning question, “how are you doing?”, what might be a straightforward question for one person can be impossible to answer for another. I once designed a form for applicants who were often unsure of their birthdates, and may have had their names changed as children. We decided to start them off with “easy” questions around their name and date of birth, only to discover those questions weren’t easy for them to answer at all.

How easy or difficult a question is depends on how it’s asked, who’s asking, who’s being asked, and what their context is. Be thoughtful about your questions, and you’ll help someone give their best answers.

When I talk about designing content for people who are stressed, I often use an example I heard a few years ago. It was a talk by Cat Macaulay at Accessibility Scotland 2019 about designing the new social security system for Scotland.

She talked about a person who suddenly became life-changingly ill. Without warning, they had to navigate the benefits system while also dealing with high levels of stress and the effect of stress hormones (cortisol and adrenaline) impairing their cognitive function.

It’s an example I re-use often. And in the past month, I’ve been living it.

My child is getting long-term hospital care. Overnight, life changed. I’m now working part time, spending most of my time in hospital, and applying for benefits, blue badges, and filling in endless forms.

And with limited time, energy, and brain power, content can make or break me. So with the benefit of a month of lived experience, here are a few things I’ve found/appreciated/hated.

1. Mobile friendly, please! I do *everything* on my phone just now. That includes things I previously would have put aside to do on a proper computer (like fill in an application). I don’t have time to sit at a proper computer anymore. Please, please make sure your forms work on a smaller, mobile screen.

2. Make it easy to fill in an email address. The number of times I have to enter, re-enter, verify — and the majority of the time, the screen has not been set so the keys I need are there (@ , _ , etc). I’m so fed up with typing my email address that I have it permanently copied and ready to paste. But some forms don’t let you paste in an email address. Argh! Please — make it easy to put in an email address.

3. Plain language. My brain is mush. The simpler you can make it, the better. Shout out to the team in charge of the Child Disability Payment Social Security Scotland — filling in that form was a content designer’s dream. Lots of helpful, thoughtful tips and options to leave information out if I didn’t have it to hand. (Who knows their National Insurance Number, or has it to hand in a hospital ward? Not me!)

4. Confirmations are great, but not too many please. It’s good to know my application went through, or was received, but each text or email just adds to my information overload and gets lost in my overflowing inbox. Keep it simple.

5. Videos and animations can be helpful, but not when I’m sitting next to my child trying to fill out an application. Transcripts and subtitles are a life-saver when I don’t necessarily want them to know what I’m filling out, or I just don’t want to interrupt the show they’re watching.

And a big thank you to all the designers who are already doing these things. I would say it’s noticed and appreciated but actually, it probably goes by unnoticed. And that’s not a bad thing. It means your content isn’t adding friction to someone’s day — and when you’re stressed, a bit less friction is always welcome.

This week in hospital life I’ve been thinking about consent.

As a content designer, consent has been one of my bugbears for some time. By law, we need to design things that help people give informed consent. That means they know what they are agreeing to, and what to do if they change their mind. But consent forms are often technical, legal, and difficult to read and understand. Too often we give up and just sign without reading.

My child turns 14 this week. In Scotland, young people can give consent from age 16. In England and Wales it’s 18.

My child is too young to legally give consent. But I think it’s so important that they are involved. One of the hardest things about being in the medical system is you can easily start to feel powerless. You live by hospital rules. People tell you what you can and can’t do, and eat, and sometimes even wear. You lose your agency.

We’ve been talking about ways of taking bits of control, whenever possible. My child is learning to say what they want and what would make them more comfortable. So it always feels odd to me to then have to consent on their behalf. These are medical procedures being done to their body.

Many of the forms we sign do have a section for the patient to sign, if they are 16 or older. I always encourage my child to sign it anyway. Technically this is giving ‘assent’ rather than ‘consent’ but it feels important.

Because the doctors and nurses are amazing, they always talk through the consent form, explaining each point and making sure we can ask questions. It really does feel like we are giving informed consent. I just wish:

1. every consent experience was like that,
2. it was easier for young people to be actively involved in the legal consent process.

A few resources on informed consent:

Designing informed consent — Phil Hesketh https://lnkd.in/eEaEYGUf

Why informed consent needs inclusive design — Joanne Schofield https://lnkd.in/eM3cfEz6