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
The challenge
In the UK, several hundred children each year have a stroke. The Stroke Association offers information and a range of services to help support them and their families during their recovery. Following parent feedback, the Association wanted to develop some new content to support families specifically during the traumatic early days and weeks after stroke.
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)
How we did it
- 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.
- 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.
- 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.
- 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.
“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.