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Why we need to better consider families and the home ecosystem in stroke rehabilitation

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In the UK, someone has a stroke every 5 minutes. Most survivors return home following their time in hospital and are faced with establishing an entirely new normal. Of the 1.3 million stroke survivors living in the UK, roughly 600,000 live with a disability. These individuals must cope with a variety of disabilities, the combination and severity of which are specific to the individual. Families frequently struggle with relearning their routines, and sharing the functional tasks associated with daily living such as cooking and cleaning. Meanwhile, when stroke survivors leave hospital care, there is little to no rehab provision. This means they must learn to self-manage their rehab, whilst also navigating the interpersonal struggles associated with their return home as they and their families adjust to their ‘new normal’.
An innovative tool to close the stroke rehabilitation gap
Co-cook is a digital platform comprising an app and accompanying assistive grips, designed to tackle the support gap in stroke patients following their discharge from hospital. It enables stroke survivors to work with their family carers towards rehabilitation by cooking. By concealing rehabilitation into an everyday task, this tool fosters collaboration between survivors and their carers to provide effective and engaging rehabilitation. While other interventions focus only on therapy time, Co-cook recognises what exists beyond therapy, acknowledging that life happens outside the therapy room.
Life can’t be normal again until you start doing normal things.
The user experience begins with a baseline assessment, developed in collaboration with occupational therapists that gauges stroke survivors’ impairment levels using 8 multiple-choice questions. The app is then able to take a recipe, and split the steps between the stroke survivor and family carer based on ability, providing recommendations for incorporating the stroke survivors impaired hand, tracking functional progress, and adding variety as well as greater levels of difficulty as the stroke survivor progresses in their rehabilitation. The accompanying grips, integrated with the app through sensors, can be retrofitted to any cooking utensil. They enable the use of the impaired hand by widening the surface area to make gripping the cooking utensils and using the impaired hand more accessible, thus widening the range of possible movements available to the stroke survivor. Finally, data on rehabilitation activity and progress can be captured and shared with clinicians to inform the recovery journey.
A co-designed rehabilitation tool
We had set out to create a solution that was inherently user-centred, with the aim of ensuring the process was collaborative from start to finish. The resulting rehabilitation tool was a user centred application co-designed with stroke survivors, their carers, clinicians, and academic experts in stroke. The development process of Co-cook was collaborative from start to finish. The initial exploratory ethnographic primary research consisted of interviewing individuals with lived experience of stroke, or caring for a family member who had a stroke. These interviews provided us with an improved understanding of the recovery journey, as well as the challenges faced by stroke survivors and their families during this recovery journey. A series of concepts centred around making stroke rehabilitation a collaborative process was developed through co-design workshops with physiotherapists, designers, stroke survivors, and their family carers. Throughout this process, cooking was highlighted as pivotal in both functional rehab and adjusting back into the home ecosystem following stroke. Finally, we tested the developed prototypes with stroke survivors and their families in their homes.
The resulting tool allows stroke survivors to engage in rehabilitation in an enjoyable, comprehensive, and inclusive manner that accounts for the wide range of potential post-stroke impairments. It carefully considers the challenges stroke survivors face when returning home and provides a variable, inherently familial and collaborative rehabilitation experience, designed to instil confidence, and motivation for stroke survivors towards long-term rehabilitation.
Co-cook was developed through the Industrial Design Studentship awarded by the Royal Commission of 1851 as a final thesis project for the MASc Global Innovation Design Programme, at Imperial College London and The Royal College of Art. Along with stroke survivors, family carers, academic researchers, and clinicians, Co-cook was developed in collaboration with The Helix Centre, a research laboratory for design and health based at St Mary’s Hospital. The project research was also supported by The Stroke Association, and Stroke Hub Wales, two organisations working to support stroke survivors in rebuilding their lives following a stroke.
Should this rehabilitation tool be implemented into survivors’ rehabilitation following their discharge from the hospital it could not only ease the burden on the NHS for rehabilitation but create the space and time for carers and the nearly 600,000 stroke survivors to cope and adapt to their new reality. As one stroke survivor who participated in the project commented, “life can’t be normal again until you start doing normal things”, Co-cook enables stroke survivors’ participation in an inherently every day and familial activity.
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Tori Simpson is an 1851 Royal Commission fellow and Designer at The Helix Centre. With a background in Social Data Science and Fine Art, she is driven by participatory work, focusing on healthcare, emerging digital technologies, and social innovation. Her design work spans various contexts, including stroke rehabilitation, disaster preparedness, conservation, and culturally representative generative AI. Tori has experience as a data analyst in the third sector and as a co-founder of Opportutoring Edinburgh, working to provide English language education to refugee children. Tori has worked and studied across the UK, Singapore, The Philippines, and Japan. She holds a BSc in Social Science and Data Science from UCL, and an MASc in Global Innovation Design from Imperial and the Royal College of Art.
