PERSONAS

Personas

PROFILES OF CHILDREN AFFECTED BY STROKE

To make the experiences of children affected by stroke more visible in the design process, we developed detailed personas based on our research. A persona is a fictional yet research-based profile that represents key characteristics, needs, and behaviors of a user group. In this project, each persona captures typical everyday situations, challenges, and hopes of children who have experienced a stroke and their families. These profiles help designers, researchers, and decision-makers to empathize more deeply, and to create environments that better respond to real needs. To better understand the context and methodology behind the persona-set, visit the Introduction and Glossary. The personas can also be downloaded as printable A4 and A3 PDFs for workshops, teaching, design projects, and personal use.

Introduction & Glossary

Download A4 persona-set

Download A3 persona-set

Puzzel Persona

Ben

Ben

Ben

8-year-old boy

AGE: 18 years old
TYPE OF STROKE: Perinatal

Ella

AGE: 18 years old TYPE OF STROKE: Perinatal

Ella

12-year-old girl

AGE: 18 years old
TYPE OF STROKE: Perinatal

Lenny

AGE: 18 years old TYPE OF STROKE: Perinatal

Lenny

9-year-old non-binary

AGE: 18 years old
TYPE OF STROKE: Perinatal

Mia

AGE: 18 years old TYPE OF STROKE: Perinatal

Mia

6-year-old girl

AGE: 18 years old
TYPE OF STROKE: Perinatal

Theo

AGE: 18 years old TYPE OF STROKE: Perinatal

Theo

10-year-old boy

AGE: 18 years old
TYPE OF STROKE: Perinatal

Zack

AGE: 18 years old TYPE OF STROKE: Perinatal

Zack

14-year-old boy

Feedback

Ben

Personal

8-year-old Boy
Only child, likes to be in the centre of attention
Lives in a detached house
Attends an inclusive school where he also receives therapy
Finds maths challenging but proudly says he can count to infinity

Likes: His favourite food is sushi (he eats and writes with his left hand)

Dislikes: Tricky things that need small finger movements, such as buttons or using scissors

Stroke
Shortly after birth

In the left hemisphere of the brain

This continues to cause:

Right-side hemiparesis (affecting his right arm and leg); uses an orthosis to walk

Seizures, managed with anti-epileptic medication

Language, memory, visuoperceptive, attentional deficits; leading to difficulties with symbols;
aligning buttons and zippers; some clumsiness in spatial judgement
Care givers and expenses
Both parents are employed

Father works full-time

Mother works part-time

Ben’s mother takes on most of Ben’s care, from organising therapy and appointments to staying in touch with teachers and managing daily routines. His special care needs require about 40 additional hours per week, sometimes even more.

The family manages their daily living with a yearly income of around €65.000, although they had to pay for modifications and special gear to support Ben.

The family’s total expenses on these needs were about €5.000, with almost €2.000 reimbursed by their health insurance. They’re currently saving €2.000 to buy a therapy bike, which will help Ben gain more mobility in his everyday life.
Landscape of care
His right side needs an extra invitation

When Ben comes into the house by himself, you can usually hear him before you see him. The rhythmic scrape of his foot orthosis on the tiles – clack, shff, clack – then a soft thud as he drops his rucksack. He sometimes calls his right leg his “favourite leg”. It’s the one that doesn’t always cooperate. His parents smile and say, “That leg just needs an extra invitation sometimes.” Ben is eight and had a stroke when he was very young, too young to understand it at the time. Now he explains it like this: “Something broke in my head. Like a water balloon popping. Since then, my right arm and leg feel kind of numb. I can’t feel them properly.” At home, there are helpful tools everywhere: a cutting board and an automatic soap dispenser designed for one-handed use, grab bars in the bathroom, and a second handrail on the stairs. Still, Ben stumbles more than other children. Balance is difficult, especially outside, like the playground down the road. That playground is tough for him: steps too high, climbing too wobbly, slides too steep. Often, he just watches the other children. “I’ve got better things to do,” he says. But his mom knows that he feels left out and unhappy when they run and laugh without him.

“Playgrounds are a real problem – even here in our own neighbourhood. He just doesn’t want to go any more.” mother
One button at a time

A year ago, Ben spent four weeks at a rehabilitation centre. Every day was full of therapy: physical, occupational, and speech. His favourite part? Swimming. “In the water, I feel light,” he says. That’s where he learned to use the right side of his body more actively.
Mother: “Up until last year, he only wore tracksuit bottoms because he just couldn’t do buttons. We practised that in rehab. For other kids, buttoning trousers is nothing – for him, it took several sessions of physio to get there.”
His doctor at the social paediatric centre, where Ben goes for check-ups every six months, explains: “The left side of the brain controls the right side of the body. In Ben’s case, that connection was damaged. But the brain can build new pathways. We call that neuroplasticity. It’s quite incredible.” Next week, his orthosis has to be refitted – Ben’s growing. He used to hate it. Now he calls it his “power shoe.” “It makes me a superhero,” he says. “My right side needs special powers.”
Lessons and therapy go hand in hand

Ben is in third grade at an inclusive school. Math isn’t his favourite: he likes the numbers but talking about them is difficult. Still, he’s proud he can count to infinity. And he does – often while at dinner, trying to grab sushi with his colourful chopsticks. “Ninety-three, ninety-four…” Rice sticks to his fingers. His mom just smiles and quietly wipes soy sauce off the floor. At Ben’s school, learning and therapy go hand in hand. Between German class (which he doesn’t really like) and physio (which he sometimes loves, sometimes hates), there’s often just one corridor. Ben has hemiparesis, a complicated word. His therapist explains it like this: “Imagine the brain talks to the body – like on the phone. It says, ‘Move your hand!’ or ‘Lift your foot!’ But Ben’s phone line to the right side is damaged. It crackles, cuts out, or goes silent. So the message don’t get through, or are delayed.” There are supports in place, but every day is still a balancing act – between focus, fatigue, therapy, and the simple desire to just be a kid.

“Even getting him to use his right hand at all – to bring it into play – that’s something we worked on a lot during rehab, too.” mother

Anna

Anna

Ella

Personal

12-year-old girl
Has a twin sister and four other siblings
The family lives in a terraced house with good access to therapy and support services
Attends a regular school
A bit shy, has only a few close friends

Likes: Listening to music alone in her room

Dislikes: Crowded or noisy places

Stroke
At preschool age
In the right hemisphere of the brain

This continues to cause:

Left-sided hemiparesis, leg-dominant (uses a wheelchair for longer distances)

Learning and attention problems
Care givers and expenses
Both parents try to balance work and caregiving

Ella’s mother works 30 hours a week

Ella’s father works full-time and sometimes works night shifts so he can take Ella and her siblings to school and be around during the day

Ella’s parents are both employed, though her mother had to cut back her hours and now works 30 hours per week. She dedicates several hours every day caring for Ella’s special needs, but with five other children it is sometimes hard to give her the attention she needs. She’s the one who takes care of therapy sessions for Ella, hospital appointments, and school communications.
With a household income of €49.000 they are just able to manage daily expenses but with a family of eight it is sometimes hard to tend to everyone’s needs, especially if they have to make adjustments at home or purchase specialized equipment for Ella.
In total, the family spent around €7.000 on these modifications and devices, with almost everything covered by health insurance. They are currently putting money aside — €2.000 — to install a second handrail on the staircase, so that Ella can move between floors more safely and gain more independence at home.

Expenses
Landscape of care
Scenarios
Where she didn’t feel “different”

Mother: “During our stay at the rehabilitation centre, we realised how even the smallest door threshold can become an obstacle. Ella had great difficulty entering the treatment room in her wheelchair, especially in the older part of the building. Her hemiparesis affects the left side of her body, including her leg, making longer distances hard to manage without breaks. Our paediatrician had recommended the rehab to help her learn to walk more safely. For the first time, Ella didn’t feel “different”. There were other children facing similar challenges. In this environment, she could just be herself, without constantly having to explain her impairment. Still, it wasn’t always easy. Her brothers and sisters visited at weekends, bringing some much-needed family joy into an otherwise clinical environment. The therapy sessions demanded a lot of energy and focus, and her attention difficulties made it hard for her to stay engaged. The area outside the therapy rooms was always chaotic – when all the children finished their sessions at the same time, it felt like a crowded train station. The dining hall was overwhelming too, with so many voices, so much noise. She quickly became overstimulated. There were few places to retreat, and sharing a room with me meant she had little space of her own.”

“This wasn’t her first rehab – it’s actually been her fourth time now. At the beginning, she really struggled to find her way around the large clinic.” mother

Already exhausting enough

Father: “I take Ella and her twin sister to school. We drive the same route through the city. They’re twelve, but I don’t want them taking the school bus – it’s already exhausting enough for Ella. I don’t want her to feel any pressure or stress. As we enter the building through the automated glass door, we see the teacher, greeting us warmly, joking around, setting a good mood. Ella always jokes that she doesn’t want to go to school, but I know she likes it here – much more than at her previous school. The elevator is already waiting, but I encourage her to use the stairs, just like she did in rehab. Back then, she managed to reach the top floor without help – something we never thought possible shortly after the stroke. Other children rush past, careless, unaware. I can feel how much effort each step takes for Ella. I insist on accompanying her to the classroom. The thought of her falling is unbearable. I don’t even want to imagine what could happen. She gets annoyed that I watch her so closely, but I just want to be there – just in case. Step by step, I help her position her foot correctly, exactly how the physiotherapist taught us. She said that taking the stairs would strengthen the muscles affected by the hemiparesis. And so we practise.”

The stroke walks with her

Mother: “As Ella’s mum, I would say the stroke always plays a role in her life. For example, she can’t simply go to therapy on her own like others her age might. Ella has physiotherapy twice a week, plus regular check-ups at the children’s hospital or the social paediatric centre in a nearby town. Even something as basic as opening the heavy glass door to the therapy building is impossible without help. It becomes even more apparent in the city. There are barely any benches, no places where she can rest when walking becomes too exhausting. She tires quickly, and every step takes effort. Stairs, uneven pavements, long distances are a challenge for her. When I think about it, there’s probably only one place where the stroke doesn’t play a role: her own room, in her bed.”

“She doesn’t always realise it, but sometimes even a small curb or a stupidly placed stone can cause her to fall. She sometimes stumbles from a standing position.” mother

Anna

Anna

Lenny

Personal

9-year-old non-binary (they/them)
Has 1 brother (Tigo: 11), 1 rabbit, grandparents nearby
Lives in a bungalow
Attends an inclusive school
Often joins their parents in bed at night
Sometimes has difficulty finding their way around

Likes: Swings, swimming, their rabbit

Dislikes: Being alone, hospitals

Stroke
At 4 months, during heart surgery
In the right hemisphere of the brain

This continues to cause:

Hemiparesis of left arm

Visual impairment (partial)

Visual memory impairment; affects their ability to remember faces or remember a route (so called ‘landmarks’ are important)

The need to take anti epileptic medication
Care givers and expenses
Parents have their own business

Father works (more than) full-time

Mother works 60%; usually more but flexibly and often from home

Grandparents

Both of Lenny’s parents have jobs, but Lenny’s mother reduced her working hours to part time to better support their special needs, which takes up about 30 hours each week for dressing, washing and general support in everyday life.

The family’s income of around €80.000 allows them to manage their day-to-day life, even though they had to invest in home modifications and special equipment for Lenny.
Altogether, they spent almost €8.000 on necessary changes and equipment, of which almost half were reimbursed by their health and care insurances. Now, they’re saving €3.500 to install a climbing frame in the additional room they hope to turn into something of a gym, helping Lenny to exercise and strengthen their muscles at home.
Landscape of care
Scenarios
Nearby, Happy and Increasingly Confident

Grandmother: “As a grandparent, I find comfort in knowing the places where my grandchildren feel safe and happy. One of those places is with us. I don’t remember a time when Lenny was without their parents, except for those moments when they’re with us. Lenny loves to visit because they get our full attention.

School is of course another exception and a place that is important for them. Therapies, like physio, are integrated at school, as are regular check-ups by doctors from the university hospital. The staff there truly understand how to support such children. With small classes of no more than 8 children and always 2 or 3 teachers present, the environment is less overwhelming for Lenny than when they were in a regular class. They feel confident doing stuff there.

The class and furniture is made in such a way that they can reach things and help each other. Since they started attending this school, Lenny has blossomed. They love going to school so much that even when they’re sick, they don’t want to stay home. School is something of a second home.”
Lenny: “The playground is my favourite place, especially the swing. I can just keep swinging, and sometimes my parents have to remind me to let other children have a turn. Swinging makes me feel good!”

“They feel understood and safe there, making it
something of a second home.” grandmother

Extra Care and Concerns

Mother: “I worry about what could go wrong with Lenny. With our son, it’s different—he’s healthy, and I don’t feel the same concern. Lenny is healthy too, but it’s not the same. Everyday we find ways to encourage them. We have to struggle against the effects of paralysis by practising, stretching and massage. Tigo doesn’t face the same challenges, and I know he’ll be fine. Sure, every child gets sick now and then, but with Lenny, this overprotectiveness remains.

This is reflected in other things as well. Our son for example finds his own way to and from school by bicycle – as long as the weather is OK – while we organise transport by bus for Lenny all year round. Although one of us always tries to join Tigo for his tennis classes, he is quite aware that his sibling constantly gets extra attention.”

Lenny: “My mother always helps me with dressing, in the morning, at bed-time, for bath time or when we go swimming. I can’t do clothes that go over my head. Also, shoes are difficult. When we go swimming, I take off my brace.”

“I like going in the water with my dad. I also like going
in the shallow pool by myself.” Lenny

A Continuous Process of Adjusting

Father: “When they were younger, it was simpler to manage their needs by using a buggy. However, as Lenny grows older, the differences between them and other children become more pronounced and harder to handle. They need help with everyday activities, like making sandwiches. Also hitting a ball with a tennis racket or skateboarding, highlight their struggles with balance, sight and coordination.

Initially, after the stroke, there were so many unknowns, and we thought Lenny might need to use a wheelchair. At that time we made our home step-free to ensure easy accessibility. However, more recently we’ve realized that having steps and stairs could have actually helped with their rehabilitation. Taking Lenny into account – also in terms of the changes we make to our home – is a continuous process of learning and adjusting to support their development and independence. At the moment we are turning the guest room into a kind of gym and we try to make or provide things that can help them exercise.”

Anna

Anna

Mia

Personal

6-year-old girl
Parents (divorced), brother (4) and family dog
Lives in a flat with her dad, in a detached house with her mum
Attends a regular school
Energetic and curious; highly competitive but quickly frustrated; popular in school

Likes: Sports, especially soccer; cuddling her dog

Dislikes: Hospitals

Stroke
Care Givers
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Stories with Care Map
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Theo

Personal

10-year-old boy
Single mum, no further family around
Lives in a 3rd-floor flat
Attends a regular school
Sensitive and thoughtful
Prefers solitude since stroke, does not want anybody to know about it

Likes: Playing on his computer, spending time in his room

Dislikes: Drawing, being around too many people

Stroke
At age 7 (3 years ago)

In the left hemisphere of the brain

This continues to cause:

Motor impairment (dyspraxia), affecting his right arm and leg

Visuoperceptive deficits, attentional deficits

Social withdrawal, anxiety, emotional processing difficulties
Care Givers
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Stories with Care Map
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Anna

Anna

Zack

Personal

14-year-old boy
Family: parents, 1 sister (19), 1 brother (16), a cat, a rooster
Lives in a row house
Goes to boarding school Mon.-Fr.

Likes: Trains, PlayStation, his electric drum kit

Dislikes: Breaks in his routines

Stroke
Shortly after he was born

In the left hemisphere of the brain

This continues to cause:

Right-sided hemiparesis

Cognitive impairment

Epilepsy (therapy resistant)

Zack also has (not directly stroke-related)

A hearing impairment; has cochlear implant
Care Givers
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Stories with Care Map
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