Co-designing Rehabilitation Spaces with Stroke Survivors

Recently I was asked to take part in a recorded interview that will be used as material for a Design for Health and Wellbeing study unit within the Melbourne School of Design, Melbourne University. Questions for the discussion included: what are the benefits (and difficulties) of including voices of people expert in stroke recovery in the design process? what do you see as the best ways to include multiple user voices in design processes? and what is one thing you would like to see change in the future?

Many of us have had experiences of stroke rehabilitation spaces or care that did not help our recovery, so I asked my friends from the ‘Genyus network – Trauma survivor Empowerment Team’ on Facebook what they thought, and dragged out some of old journals, before putting together some ideas for the interview. As always, stroke survivors were keen to help others who will go through this wild thing called stroke, so I received some great ideas.

Everyone agreed that including the voices of people expert in stroke recovery in the design process would add value and richness to the process and outcomes. Stroke Survivors come from a wide variety of work and cultural backgrounds, before their stroke. Stroke survivors, as well as their lived experience of stroke, can bring skills and knowledge in engineering, health care, design, sociology, psychology or be incredibly creative. One thing I have noticed is that stroke survivors will generally be very honest about their needs and experiences in the stroke facility environment.

“Including people can help a lot of others to let them know they aren’t alone. Including multiple people can give different prospective different journeys and different recovery”
Em Benham

Stroke survivors can also help health professionals, designers and academics ‘think outside the box’ because they have had lived experience ‘problem-solving’ after stroke and provides an opportunity for ‘shared creative ideas’ to emerge. Including multiple people can give different perspectives from different journeys, different recovery outcomes, cultural, age differences and might enhance ‘future proofing’ the design.

If co-design was promoted, knowing Stroke survivor consumers have been involved can help other stroke survivors know they are not alone.

However, it is not “all beer and skittles”, as my mum would say, including stroke survivor experts in the design process. Some of the practical difficulties survivors mentioned included: how do you get people from different locations being able to work together effectively in a place or “space” that meets all their needs and at a time that fits with their different levels of post-stroke ‘brain fatigue?’ Zoom plus other tools can be hard for some survivors to manage in terms of cognition, IT skills, physical disability, problems with sight or with communication. Consumers may need training or information beforehand so they can participate freely, like training in Zoom and in tools like Miro.

Creating a culture & process that respects stroke survivors’ perspectives as equal experts is hard and needs time. My stroke survivor peeps also thought it was important that including stroke survivors needs to be balanced with knowledge about what is good evidence-based stroke rehabilitation.

“What are the benefits (and difficulties) of including voices of people expert in stroke recovery in the design process? I believe in having these people who have had a stroke would aid the process as it would it allows a honest view of the needs. However, a balance is required so schooled people in neurological conditions with textbook knowledge will be required for balance. Need stroke survivors for thinking outside the box with their lived problem solving and need textbook knowledge people to tick the boxes of science and paperwork.”
Lauren Hampson

Stroke survivor friends said that some of the best ways to include multiple stroke voices in the design process involved being ‘legit’ about engaging with consumers, acknowledge the power differential between consumers, professionals and designers and positively discriminate towards the perspectives of consumers.

“A difficulty would be the terrible memories a lot of survivors have from their stroke hospital experience. A benefit is the effort made by health professionals to improve connections and value their patients as contributes not just consumers. [Aid inclusion] By reaching out to already established networks where survivors are connected, offering financial pay for their time”
Sue Bowden

They said that there was no easy way to involve multiple consumers. Designers need to check with a range of consumers about how they would find it easier to be involved. One stroke survivor might say they need a helper their end to ‘drive’ the IT; another may talk about maximum concentration span; another might need some training or prep. Getting people to work together in small mixed groups of consumers, designers and rehab health professionals might help to minimise anxiety or hesitancy and grow group trust.

Locating the quiet voices is hard. Having aphasia friendly forms, can be helpful. Consulting a speech therapist like Emma Power who can help here re developing research communication ahead of/during project design. Being patient as people with aphasia work hard to express them self – This is important. Accommodating their stroke related needs. However, recruitment through stroke networks is one way of locating participants. Appeal/Request expressions of interest to a variety of stroke survivors – eg. Those with communication disorders, hemiplegia, cognitive difficulties, sensory issues etc. Treat them as equals for their expertise and pay them appropriately for their firsthand knowledge, essential to good research.
Barbara Wolfendon

Consumers said that shorter more frequent meetings or workshops with time to reflect in between helped them to be involved, and that breaks within the workshop for going to the toilet or getting a drink may need to be a bit longer for consumers to feel unrushed and valued. The design group needs a good mix of people, ideas and discussion, individual and group activities. I think you need a very skilled ‘conductor’ & multiple well-trained facilitators, some ground rules, especially with ‘brain-storming’ or ‘prioritising’ (and an assistant facilitator is handy).

“What are the benefits (and difficulties) of including voices of people expert in stroke recovery in the design process? Wards and rehab units etc. often are not designed to be user-friendly for stroke survivors. The benefit of including stroke survivors and carers is their lived experience and knowledge of what worked and didn’t work for them personally whilst in hospital or rehab“
Brenda Booth

What do you see as the best ways to include multiple user voices in design processes? Face-to-face group forums or zoom, if this is not possible then a user-friendly survey with stroke survivors and Carers about their observations and suggestions of what environments work well.
Brenda Booth

“A difficulty would be the terrible memories a lot of survivors have from their stroke hospital experience. A benefit is the effort made by health professionals to improve connections and value their patients as contributes not just consumers“.
Sue Bowden

We need “More zoom, more accessible/inclusion where you live so you’re not feeling alone health professionals to listen as we all have different medical conditions on Em Benham top of strokes/heart”
Em Benham

Everyone I spoke to about this said that gaining the perspectives of stroke survivors who live with aphasia will require approaches that need to be designed with an aphasia expert.

The last question “what is one thing you would like to see change in the future” drew out some great responses – relating to both the design of rehab spaces and the design of the rehab process itself!

True partnership between researchers, health professionals and designers working with stroke survivors or other consumers is important. Consumers driving or being central to the design briefing process was a big issue.

“What is one thing you would like to see change in the future?
That the value of co design and consultation cannot be underestimated! It helps make the environment as user-friendly as possible”.
Brenda Booth

“Change the victim language for good, this needs to be widespread. And see more representation of survivors who have been highly engaged to encourage other survivors voluntarily – be paid! More acceptance by health professionals that we do have real valuable contributions to be made.”
Sue Bowden

Only consumers know what it is like to sleep, eat, be in a hospital rehab unit 24 hours of every day of every week for up to months. Insight into how an environment feels for a person who has no power over its design, operation, or culture is key information. Designers and others involved may have been a ‘visitor’, ‘family member’ or even an inpatient for a different condition but that has not substituted for the experience of a stroke survivor, often paralysed, unable to see, speak, swallow, or understand.

There is one big one – the ability to provide confidential/private consults, not just chat behind a curtain, and the ability for patients to sleep on noisy wards at night, to shut out a complaining neighbor next to them when their family visit. My suggestion would be retractable walls between beds on a ward. They may still be seen through for staff monitoring of patients, but it would be good if the patient could press a button at any time in the day and esp. nighttime to enable a quiet space for brain rest or sleeping. Lack of sleep can be bad for stroke survivor function and recovery.
Barbara Wolfendon

“We need: people who are neuro educated but also with multiple disciplinary medical understanding … We are complex and diverse, and it’s just a simple fact that we often have multiple co-morbid conditions. Isolating conditions or symptoms to be treated by separate specialists can be a complete waste of time, as well as disheartening and outright depressing. For everybody involved. We need educated people, (who will be listened to,) to highlight the possibilities and turn around the diagnostic / treatment mode from being one that mostly highlights and concentrates on the deficits, and instead prioritizes identifying and supporting the potentials, the remaining capacity and recognizing and maximizing everyone’s willingness and desire to be whatever the hell they still want to be. Accepting that you now have holes in your head and learning how to navigate that is an important part of the process, but there is enormous scope for a more self-empowering system, that is enabling and encompassing, rather than disabling and diminutive. I can be thick as two bricks on some levels, but given half a chance, on other levels … i can be remarkably productive and could contribute greatly to the world. Given the chance, i would do so. The waste of my capacity and potential, based on the required box-ticking exercise that labels me as being “disabled” enough to justify being supported by my own government … is the most wasteful and self-defeating pig’s-wallow of stupidity i could ever even imagine. This is my own little dystopian hell that i have by chance and circumstance been relegated to, but sadly, I know that I am far from being alone”.
Kim Jackson

Stroke survivors wanted to see increased and smarter use of technology to support their recovery in rehab. They want rehab professionals to think about ‘why does this happen now? ‘Is it helpful? or is it the workplace culture and organisation.

“What is one thing you would like to see change in the future? Change for in the future no prescribing top 5 of anything... exercise, problem solving, medication no one stroke is the same. A neurological directory or app for family and patient to find solid info on and where to go for their area. Equipment aids more accessible to try before you buy. Look, touch, use etc. if practical.”
Lauren Hampson

People who had been through rehab told me they thought there should be more attention given to how individual people learn or think best: are they visual, auditory, or kinaesthetic learners?

They emphasised that rehabilitation is a learning space AND a healthcare space.

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