Developing a child stroke guide using parent-carer insights

The project

Working with the Stroke Association and people with lived experience to develop a guide for parents and caregivers whose child have just had a stroke. Winner of the 2025 Charity Comms Inspiring Communicators Award for best charity-freelancer collaboration.

The solution

Traumatic situations such as health emergencies impair people’s ability to take in new information. Yet after an event such as a stroke, there is a huge amount of technical information about tests and treatments to take on board. So parents’ request for ‘simpler’ information made sense – but it was less clear what form that content should take.

To build up a clear picture, we developed a two-stage project plan that comprised:

Gathering insight Running semi-structured interviews with six parents whose children had experienced stroke

Developing content Drawing on their insights, we wrote a short, simple guide to a post-stroke stay in hospital. Following their requests, it included:

• Positive imagery of family life, using bright colours, to contrast with the medical environment, often lacking natural light, where families may be for weeks
• An infographic showing the care pathway to help parents understand the possible post-stroke pathway for children, using clear visuals and simple language
• Voices of other parents to help people feel less alone and normalise difficult experiences.

“It’s amazing to see it like that! What a wonderful product you’ve created. I really hope you know how valuable this will be! I’m so grateful to have been a part of this!” (parent-carer)

Parent-carers were overwhelmed by the complex treatment pathway for children with stroke and asked us to represent it through a clear visual. This seemingly simple visual involved much discussion and research, with clinical review, to summarise a complex and nuanced process with many variables.

 

 

 

Update: Referrals to the Stroke Association’s Childhood Stroke Support Team doubled in the first few months after the guide was first published compared with the same period the previous year.

 

How we did it

1. Discover Eleanor worked closely with Content Manager Jenny Simpson and Childhood Stroke Lead Anwen Prendergast to understand the challenges they were already aware of. She then interviewed six parents, who shared their experiences of their child’s stroke, their experience in hospital and their own emotional reactions. She invited them to explore what resources they would have found helpful and consider options. Eleanor presented these in a short report, highlighting key themes and linking those to recommendations for the guide.
2. Define Eleanor then worked collaboratively with the Stroke Association team to assess the insights and recommendations and build a brief for the guide. The guide was to be short, with minimal text and clear visuals, as it was designed for parents at a point of severe psychological trauma and cognitive overwhelm. A key tool was a diagram simplifying the pathway for children who have had a stroke.
3. Develop Eleanor wrote the copy, focusing on the topics and approach the parents said they wanted. Because stroke in children is rare, parents can feel very isolated, so we included parent quotes from the interviews to help them feel less alone and help normalise some of the feelings they might be going through. We sought feedback from parents and clinical teams and fine-tuned it before sketching out clear instructions for the designer.
4. Deliver The final product was a small booklet. This seems like a minimal output for a piece of detailed work. But the value of the resource is in its brevity, with signposting to where parents can go for more information and support when they feel ready. Every element is carefully designed to make a real difference to distressed parents in hospital when their child has had a stroke.

“The ‘My child had a stroke’ pamphlet came today. Beyond proud to have been even a small part of creating that! What a wonderful piece of literature, I wish I’d had access to. Thank you for making it a reality!” (parent-carer)

The Design Council’s double diamond: a helpful model for opening areas of inquiry and refining objectives.

Parent-carers of children who had had a stroke asked for the guide to be as simple as possible. This request reflects wider findings about the need for people experiencing trauma to receive information that is clear and simple to digest.

Learning points

• Participation can be cathartic. The team carefully selected interviewees who would feel comfortable describing their experiences. The semi-structured nature of the interviews enabled parents to share their stories at their own pace. Protected by anonymity, some described fears or frustrations they had felt unable to share previously.
• You don’t know what you don’t know. The team was already aware of some of the issues parents faced. But the interviews highlighted some unexpected feedback. For example, parents asked for bright colours to contrast with the windowless hospital environment that they are in for extended periods. Many described difficulties explaining the situation to others because people often associate stroke with older people.
• ‘Children’ range from babies to teenagers. We needed to use imagery and language that felt relevant and inclusive to parents with children and young people of all ages, as a stroke can happen at any age.
• Use an empathetic tone of voice. The Stroke Association has clear guidelines for describing stroke and acknowledging the difficulty of predicting the long-term effects. We built on this by using a warm tone to help parents feel they were not alone and signposted them to the Childhood Stroke Support Team if they wanted to speak to a ‘real’ person or have any questions.
• Prioritise design as well as copy. Parents wanted an A5 resource that they could keep in their bag and refer to it over and over again throughout their hospital stay. The central tool in the guide was the visual pathway. We sketched and amended this over time, incorporating feedback, so that we could provide the designer with clear instructions.
• Balance present and future needs. When a child returns home after a stroke, the family may begin living with new physical, cognitive or behavioural challenges. We spent some time finding the right balance. The guide focuses on life in hospital but also touches on the longer-term picture. This is designed to help parents start to psychologically prepare without overwhelming them.

Order or download the booklet Order or download the booklet

“We really wanted our new resource to be co-created with parents, to help ensure it best met the needs of our beneficiaries. Eleanor had previously worked on some of the childhood stroke information on our website, and we knew her sensitive approach and knowledge as a parent carer would be a good fit for this project.

Eleanor understood clearly how to capture key parental insights and bring them to life in her writing. This has resulted in a concise booklet which will better support parents and caregivers in the early weeks after childhood stroke, as well as signposting them clearly to our other services during their child’s recovery journey.”

Jenny Simpson | Content Manager – Beneficiaries | Stroke Association

Order or download the booklet here.

The post Developing a child stroke guide using parent-carer insights appeared first on Articulate Health.

In health communications, lots of us start off learning one of these disciplines but as we develop our skills over time, we see that they are simply different techniques underpinned with the same principles:

• being clear about the problem you want to fix
• understanding who you need to reach to make this happen, and what you want them to do or feel
• identifying the best medium to reach them
• finding the right language, tone, look, feel and medium to motivate this change.

In my mind, whether your tool of choice is a camera, a phone or a pen, it’s just a means to an end – to help articulate the messages that will make a difference to people’s lives.

Sometimes, the right medium to convey a message is film. That’s why I spent this weekend with a fab team at Guys and St Thomas’ NHS Foundation making a film to encourage people with diabetes to get laser eye surgery by showing them it’s not as scary as it sounds.

Not because I’m a filmmaker but because I’m a health communicator and in this case, film was the most effective way to achieve patient engagement.

The post What health comms box do you fit into? appeared first on Articulate Health.

A focused period of deep work. A lunch break. A carefully curated selection of meetings, back to back. A couple of brief email periods. Probably Morcheeba and camomile tea. Finishing at 5. It’s so calming I’m almost drifting off as I write this.

Still, you have to admit, the one on the left would make a better woolly scarf.

The post Time-blocking appeared first on Articulate Health.

I’m massively proud of this short animation, launched last week, which shares the research findings of Jill Maben OBE and the team at the University of Surrey about what it was really like nursing on the frontline during the pandemic.

The process of making it was a true collaboration – between Jill and her fellow academics, the artist and animators at CC Animation and myself sitting between the two. The process was intensive but fascinating. Our ongoing dialogue made sure every stroke of the artist’s pen, and every line that the actors delivered, captured the nuance of the original research findings.

The end result presents the team’s research findings in a way that’s clear but, importantly, engaging to people who wouldn’t normally read a research paper.

That’s what I’m all about – helping people in health articulate their messages in whatever way works best for the audience and context. Right now, I’m feeling incredibly lucky to be doing just this!

The post The many ways to tell a story about health appeared first on Articulate Health.

The problem is that when you’re firefighting 20 different projects, with a head full of internal politics and a diary full of meetings, it’s hard to step back and:

• see the bigger picture
• reflect on your organisation’s own practice
• set the priorities
• find the interesting angles
• talk to the people whose stories need telling
• recognise what you’re already doing brilliantly.

In recent years, I’ve increasingly found myself acting as a sounding board and collaborator alongside the healthcare and communications professionals I work with – brainstorming ideas and then coming up with some simple actions to move forward.

In anthropology, we talk about two perspectives for understanding a situation: ‘emic’ (seeing things from the inside) and ‘etic’ (seeing things from the outside, looking in). A good ethnographer will do a little bit of both.

I’ve borrowed this approach to combine an inside understanding of people’s frustrations, fears and challenges with a fresh perspective and an understanding of the wider health communications landscape, to produce clarity, calm and – often as not – a big sigh of relief.

The post The biggest challenge facing my clients appeared first on Articulate Health.

Between 2012 and 2022, one new toolkit was published every two weeks and in 2016-20, one a week.

It’s so important that health services are designed around what people actually need, in ways that work for them – which is why public and patient involvement is a Very Good Thing. And it’s a complicated business, which is why toolkits are brilliant to help people working in those services learn how to do it – as long as people are actually using and reading them!

Now, I actually do love a toolkit (I have been known in the past as ‘toolkit Eleanor’ – I *think* that’s a compliment) and I’m responsible for some of this mountain (like the Experience-Based Co-Design Toolkit and others hosted by the Point of Care Foundation). But the sheer volume does indicate that there’s a lot more time spent developing them than actually doing the business of engaging with people who use services.

For me, this is a good reminder that we really need to interrogate the ‘why’ of every publishing project at commissioning stage and to evaluate impact afterwards. It all goes back to the question of audience and need. Especially in the statutory and charity sectors, the last thing we want to do is to waste resources and duplicate effort.
See the resource at: https://lnkd.in/epUYBhwh

The post A mountain of toolkits appeared first on Articulate Health.

Especially when creativity is involved – writing, design, film etc – we need boundaries and structure more than ever. If you think it seems boring or fixed to have a set way to go through work projects – think again.

So for copy, we have stages like:

• A development edit – to look at overall issues like narrative, structure and voice
• A copyedit to sort out grammar and flow
• A proofread to pick up last typos

Amends need to relate to each of these levels of change – so we don’t start re-thinking the structure or voice at the proofing stage.

And they need to be clearly marked, so the editor is only checking the most recent set of changes, rather than re-starting the entire process from the beginning.

With film and design, there’s a similar hierarchy. Basically, start with the big issues, end with the details.

So often, these get compressed into one long jumble of tug-of-war between authors and editors with no one clear exactly what they should be checking for. Costs ramp up and so do blood pressures – and the likelihood of perfection becomes more remote than ever as the risk of errors rises every time someone goes back to the drawing board. (If you want to avoid this, I can help you, by the way.)

It’s not people’s fault. People aren’t taught this stuff – and digital publishing allows more flexibility so that ‘final’ doesn’t really have to mean ‘final’. I’m working on a graphic to clarify these processes. What elements do you come across that often get missed?

The post Publishing processes appeared first on Articulate Health.

It really matters, because if you can’t understand medical advice or navigate our mind-boggling healthcare system, you will have poorer health outcomes– simple as that.

As health communicators, that means being clear who our audiences are and how they understand, process and use health information effectively.

Health literacy puts people in the driving seat. From making informed treatment choices to understanding how to reduce risk, health literacy helps people take charge of their own well-being.

If you need a quick reminder of why this matters, or if you need to persuade colleagues, the Patient Information Forum’s updated poster for Health Literacy Month 2023 shares some key stats, updated for the latest data.

The post Health literacy matters appeared first on Articulate Health.

• Case studies bring a project, health condition or treatment to life by showing its impact on the people involved.
• Short quotes and minute journalistic details are like details in a painting, helping you conjure up the events in your mind.
• Stories of lived experience inspire change and help others feel they are not alone.
• Even when I’m writing reports or strategies like the NHS People Plan, I’m always thinking carefully about the narrative I’m crafting – the overall message we want people to take away, and the voice and tone we are using to share it.

But communications is only one of the areas in which storytelling is used in health and healthcare. It plays a crucial role in quality improvement and research– and in measuring impact. And of course, it sits at the heart of health care: in the consultation, where the person shares how they are feeling and what has been happening to them.

That’s why I’m very excited about the forthcoming symposium run by two organisations who know more than most about listening to the voices of people across healthcare– including patients and staff – Picker and the Point of Care Foundation.

On this topic, in particular, it feels important to be learning alongside others, face to face. So I’m heading to Birmingham in November to spend a day immersing myself in ideas and insights. Come and join me!

The post Using storytelling in health and healthcare appeared first on Articulate Health.

1. Assuming we ‘know’ the audience Unless this assumption is based on some insight work, this always rings warning bells. If they’re making assumptions at this fundamental level, there’s a good chance the content won’t hit the spot and provide the outcomes they want.

2. Defining the audience as ‘everyone’ No apologies for another audience-related one as it’s so fundamental to the success of any project. Even if your audience is wide, you’ve probably got a primary audience and some secondary. If it really is ‘everyone’ then look at dividing that into segments and targeting those subgroups according to their needs and preferences.

3. Being unclear about communications conventions This includes lacking awareness about principles such as grammar, plain English, health literacy or ensuring information is evidence based. It also includes lack of familiarity about publishing or production processes.

4. Being overly wedded to those conventions This often means holding on to a very formal style or structure where something else might serve them better. It’s all very well knowing the rules – but good communications often requires us to break them too.

5. Giving wrong people a veto on the wrong things This happens where publishing products fail to differentiate between content experts and communications experts. The process works best where the former take a strategic role, while communicators lead in how to convey the messaging to the audience. The communicator’s lack of specialist knowledge is vital in overcoming the risk of navel gazing or vanity publishing.

6. Lack of experience in publishing processes Thanks, I’m guessing to the speed of digital publishing, I’m seeing a lot of projects where the traditional stages are being compressed into one big free-for-all. This means a lot of the important elements needed to check sense and accuracy get overlooked. The result is a lack of clarity in everything, from schedules to roles, unrealistically tight deadlines that need to be repeatedly extended – creating headaches for absolutely everyone.

I’d love to hear how others are tackling these. If recognise any of these issues and you’re feeling stuck, I can help.

The post Six comms problems I’m seeing a lot of… appeared first on Articulate Health.