This enquiry explores how an archive of images created by artist Michele Angelo Petrone about the emotional cancer journey might be used to support the emotional needs of people living with a terminal illness.
Funded by: Research England
Project lead: Claire Craig
Partners: Michele Angelo Petrone Foundation
Within the United Kingdom there are 2 million people living with a cancer diagnosis. This figure is estimated to rise to more than 4 million by 2030 and then to increase by approximately one million each decade between 2010-30.
Whilst cancer care provides state of the science biomedical treatment there is a growing recognition that current services do not sufficiently address the psychological and social problems that a cancer diagnosis frequently brings. In a recent study it was found that 58% of people diagnosed felt that their emotional needs were not looked after as much as their physical needs (Healthy London Partnership, 2020). These feelings continue to the extent that even 10 years after treatment 54% of cancer survivors still experience one significant psychological issue and these feelings are not confined to the person living with the condition (Healthy London Partnership, 2016).
Finding ways to enable individuals to describe their emotions and feelings is important. Michele Angelo Petrone was 30 when he was diagnosed with cancer. Treatment focused on his physical needs but neglected the emotional dimension of living with a life limiting illness. As an artist he began to express himself through is art and his exhibitions were found to offer people with cancer a language through which they could also articulate their experiences.
We have created a resource based on Michele’s work and we are seeking to understand how 3rd sector organisations working with individuals experiencing life-limiting illnesses might use Michele’s materials and whether they see any potential of the legacy of artwork that has been left.
Findings of this research will potentially feed into a growing body of work that highlights the potential of museum collections and object handling sessions in promoting wellbeing through evoking personal connections as well as eliciting aesthetic and personal responses.
Most of all I need to know, that you know, that within my body there is me
A design artefact that explores concepts of ongoingness in the context of dementia. The piece explores the relationship between a granddaughter and her grandparents through capturing and curating digital media now for the future, offering ways for her to feel a sense of her grandparents in particular places.
Project lead: Helen Fisher
Funded by: Research England
Partners: Northumbria University (Lead) / Newcastle University / BBC / Marie Curie / CRUSE Bereavement / National Council for Palliative Care
Trails is a tiny audio artefact that invites the listener to discover stories captured and curated by loved ones with dementia when visiting places that are meaningful for the person and their family. The artefact is one design response generated as part of the EPSRC project, Enabling Ongoingness which explores the role of design in creating meaningful connections with people who have passed away or who are at end of life.
The development of resources for network enhancement activities, part of the mechanism to establishing Compassionate Communities when it comes to end of life care.
Project lead: Claire Craig, Helen Fisher
Funded by: Marie Curie
Partners: Compassionate Communities UK
Compassionate Communities are networks of support comprising of family, friends, neighbours and community members; they are the foundation of what matters most to those undergoing experiences of death, dying, loss and care giving. The Network Mapping Kit was funded by Marie Curie as an extension to the Life Cafe and is used by Community Connectors to establish and build supportive networks within communities.
For more information about Compassionate Communities please visit the CCUK website.
This enquiry explores the role of design in supporting meaningful conversations for older people living in care homes.
Project team: Claire Craig, Helen Fisher
Funded by: Research England
The Department of Health defines a care home as an establishment that, ‘provides accommodation, together with nursing or personal care for [individuals who] are or have been ill, persons who have or who have had a mental disorder, persons who are disabled or infirm’ (Department of Health, 2000, p.3).
Older people living in care homes have some of the most complex needs of society (Office of Fair Trading, 2005). Levels of dependency are high. In one national survey undertaken by BUPA and the Centre for the Policy of Ageing (Lievesley, Crosby and Bowman, 2011) 90% of care home residents were identified as having high support needs.
This enquiry explored the role of design in supporting meaningful conversations for older people living in care homes. The outbreak of COVID-19 meant that care homes became closed communities. As a consequence, residents who were frail or facing end of life were unable to tell family members how they felt and to say goodbye. This enforced separation also made it difficult for family members.
An earlier enquiry, funded by Marie Curie, identified topics that individuals at end of life identified as being meaningful and questions people wished they had asked their relative whilst they were still alive. These topics and questions were translated into the research-informed product: You & Me.
Current research is evaluating the potential of Me &You to support relationships between older people living in care homes and their family members, offering individuals the opportunity to express what is important.
This little resource prompts you to record all the things you want to say to your loved one but somehow just never have time to put into words.
This research explored the role of design in re-imagining patient information. During a previous enquiry, Journeying through Dementia, individuals living with the condition described how existing hospital information and leaflets reinforced a reductionist and medicalized view of the self. The research identified a need to create materials that were more personalized and could challenge the stereotypical images commonly associated with living with a diagnosis.
Project team: Claire Craig, Helen Fisher
Funded by: National Education Scotland
Partners: Alzheimer Scotland
The team employed a participatory research approach, working with people with dementia and health care staff in Northern England and Scotland. The themes of the cards were determined through the research process and reflect the topics identified as being important. Decisions in relation to the images were made in partnership with people living with dementia.
The resultant materials provide key information that can be shared with families but the design and style of these mean that they can sit comfortably on the coffee table, blending seamlessly with the home environment.
These have found to be effective as a focus for conversation and as a mechanism to support engagement in meaningful activity.
It makes such a difference having something blether about. The cards are beautiful. They aren’t hidden away but sit proudly on the coffee table.
This project takes a user-centred approach through needs assessment, co-design, interviews, case studies and usability testing to design and develop a product range to help children with arthritis lead more active and independent lives.
Funded by Sheffield Hallam University, Lab4Living, NIHR CYP-MedTech and Sheffield Children’s Hospital
SHU supervisors: Dr Joe Langley and Nick Dulake External supervisors: Nathaniel Mills (NIHR CYP-MedTech) and Dan Hawley (Sheffield Children’s Hospital NHS Foundation Trust)
The problem Juvenile Idiopathic Arthritis (JIA) is one of the most common causes of physical disability in childhood (National Rheumatoid Arthritis Society, 2018) with between 1,000 and 1,500 children developing it each year in the UK (Silman & Hocheberg, 2002). Despite the commonality of the issue, arthritis in children is often trivialised with many products targeted towards older users highlighting an ignored cohort and the potential for new products.
The approach This research uses co-design, interviews, surveys through support groups, case studies, sketching, form modelling and prototyping to explore technologies and products to support children with arthritis and their families to enable them to live more active and independent lives. Participatory research methods involving children, families and clinicians has led to a range of prototypes being developed.
Paediatric conditions were focused on as children have an entirely different outlook on the world from adults (Cherry, 2018). For younger children, they often have an innate confidence in themselves, unconcerned about how things they do are perceived whilst their creativity is boundless as their imaginations aren’t curbed by rules of logic (Frost, 2016). As a result, this makes them an ideal target market due to their adaptability. For older children, whilst they are more concerned with their appearance and how their actions are perceived, their key driver is increasing their independence and exploring their world, which diseases like arthritis can limit. By encouraging certain behaviours such as self-management of a condition from a young age, it gets them adapted and into the routine. In adulthood then, these early experiences will give them confidence in managing their condition allowing them to live independent lives and reduce potential ‘crisis’ scenarios.
JIA was chosen as the condition as it is not an uncommon problem yet it is treated as such, with many children feeling stigmatised and isolated. The fact that it is a ‘hidden disease’ can lead to much disbelief with an often long wait to diagnosis- “I was in a lot of pain and started to get bullied as I was different” according to one child participant. With the formation of a new charity called Versus Arthritis in September 2018 following the merger of Arthritis Care and Arthritis Research UK, there was a refreshed campaign for recognition as the condition “steals from millions of people every day” (Versus Arthritis, 2018), the currency of the issue and the extent of the ignored cohort was emphasised, leading to the decision to focus on this area.
Users were at the heart of this project with initial research looking into the needs of the different stakeholders involved: the child, the parent/ carer, the healthcare professional and the teacher. Through this, it became clear how varied the key priorities were within the group:
The child wanted “something to help with pain so that [they wouldn’t] have to stop doing fun things”.
The parent/ carer, in addition to aids to distract from pain, also wanted something to help keep better track of the condition.
The healthcare professional wanted something to help motivate physiotherapy.
The teacher needed something to help with disbelief in the classroom.
Initial thoughts about briefs had centred on improving assessment, helping with everyday activities and reducing stigma. The priorities put forward by the stakeholders slightly altered the direction, driving the decision to develop four interventions simultaneously, with each targeting a key need put forward by each group:
Helping with pain management
A way to keep track more easily
Help with communication in the classroom
Through the duration of the six month timeframe, each brief was developed by Ursula to prototype level. Workshops with children who have arthritis and their families were held at the research, initial design, further development and final prototype stage in order to ensure the products were fulfilling a need as well as to tease out issues and potential improvements. Technical requirements were tested and tweaked to ensure both ease of use and safety whilst the forms were explored through physical models and sketching, taking into account both ergonomic factors of gripping difficulty and aesthetic drivers of wanting something discreet but that also validated their condition.
Outcomes Four prototypes were developed as part of the final year project:
Heat- FIX: A wearable device that helps to distract the brain from the joint pain during a flare. It can be wrapped around any joint and fastened securely in place.
“The warmth of it is really soothing- I love the degree of control.”
(child participant with arthritis)
Active- FLEX: A motivational physio tool that has an additional link to a character on the app helping to gamify and incentivise an otherwise “boring” chore. The colours are bright and energising with the gripping texture ensuring ease of use.
“I hate nagging her to do her stretches- this way she’d want to do them.”
(parent workshop participant)
Class- COMM: A wearable to help facilitate communication between the pupil and teacher when the child is in pain/ needs help. With a form similar to a Fitbit, the wearable is discreet, helping to reduce feelings of embarassment.
“Teachers have forced her to do PE as they weren’t aware – this would help with disbelief.”
JA- CONNECT: An app with different versions for parents and children to both help keep better track of the condition as well as to create a network so that parents and children don’t feel so isolated in their experience.
“The first thing that clinicians ask when I mention a symptom is ‘do you have a photo?’. This would really help in tracking changes.”
“Being able to pass tips onto other kids would be so great.”
“The University, though the Lab4Living research group, already have a strong relationship with both Sheffield Children’s Hospital and NIHR CYP-MedTech, collaborating on a range of projects with both. This enabled Ursula to benefit from research input to her undergraduate work at organisational, operational and technical levels of her project. Subsequently, following graduation, Lab4Living has provided a ready route to enable Ursula to continue her project through to implementation.
(Dr Joe Langley, Lab4Living)
The future This project has been awarded funding from NIHR CYP MedTech through Sheffield Children’s Hospital, to further develop the product outcomes, which started in October 2019. The development will focus on improving the technology whilst also looking at the connectivity aspect of the products with the app platform. The first goal is to carry out a pilot study, the results of which can then drive further improvements, with the hope being that these products will ultimately go to market.
Dynamic manufacturing provides a way to be responsive to the demands of the market and can help to create and accelerate production development. In this programme of research, Lab4Living researchers investigated new ways to design and produce carbon fibre ankle foot orthoses (AFOs).
Funded by Trulife.
Project Team: Design Lead – Nick Dulake
The enquiry gathered and analysed published anthropometric data. This was used to create the master CAD design file. The model was parametric, meaning that key dimensions could be changed whilst maintaining dynamic relationships. As a consequence, the master file could be used to create distinct new products that varied in scale or proportion. This meant that the foot orthosis could be customised to an individual. Prototypes were used in development testing with users.
The new system has been the catalyst for a leaner production process within Trulife’s factory in Sheffield, UK. At the end of the project, the new system was capable of producing over 270% of the output when compared to previous techniques whilst achieving higher quality and better consistency of product.
General anaesthesia for obstetric surgery, including caesarean section, is often delivered in emergency situations where some of the specific physiological features relating to an individual patient that might affect oxygenation and airway management can be overlooked.
Failure to intubate the trachea (insert a tube for ventilation) can have disastrous consequences for both the mother and unborn baby due the resulting lack of oxygen. It is therefore important that anaesthetists are given appropriate training for this patient group.
However since general anaesthesia in obstetrics is relatively uncommon, training opportunities for anaesthetists are limited. The use of simulation and trainers for anaesthetists and their assistants is important in developing and maintaining their obstetric airway skills.
Current airway management trainers exist mainly for adult males, paediatric and neonatal models, including models for rare conditions. There are no obstetric specific airway management trainers for sale on the current market.
Many of the physical changes which present themselves throughout pregnancy are not incorporated into the generic adult models and specific procedures in relation to obstetric patient positioning are not achievable.
By incorporating the specific functionality needed, we hope to produce a much more realistic obstetric patient training tool which will support learning in obstetric anaesthesia.
Andy Stanton, lead designer
Working with anaesthetists as representatives of Sheffield Teaching Hospitals, Lab4Living is developing a prototype obstetric airway management training tool which incorporates obstetric related functionality. This functionality includes:
Varying degrees of upper respiratory tract swelling depending on length of labour, conditions such as pre-eclampsia and use of oxytocin.
Enlarged breasts making insertion of the laryngoscope more difficult.
Longer hair and use of hair pieces leading to exaggerated neck flexion and suboptimal patient positioning.
The facilitation of a left lateral tilt of the operating table with potential incorrect application and direction of cricoid pressure with resulting vocal cord deformity.
Shorter neck with the growing prevalence of obesity in this population.
By incorporating interchangeable functionality to present differing emergence scenarios, the design team aims to produce a more realistic training tool to better inform clinical teams in the area of obstetric anaesthesia.
This project concerns the development of an iconic tactile language for use in the production of tactile maps.
Project team: Paul Chamberlain Patricia Dieng
Signs and symbols can generally be described as pictographs, literal pictorial representations of the real world, and ideographs that are abstracted ideas of that world. While simple pictographs can relate to particular objects, the implications for meaning can become extremely complex when they become abstracted as ideographs or combined. Chamberlain, with RA Patricia Dieng, investigated whether pictographs, ideographs or abstract symbols used in tactile maps are more appropriate for blind people to conceptualise spatial and environmental concepts and relationships.
The study involved a series of user-workshops with Sheffield Royal Institute of the Blind. Important was how blind users interpreted the tactile qualities of the maps and how partially sighted people interpreted the visual qualities of the map. The aim was to create a communicative link between for people with vision and without vision.
The work has led to a spin out company TacMap which provide a design service utilising findings from the research and create tactile maps for a range of businesses and public services that include South Yorkshire Transport Executive and The Queen Elizabeth Olympic Park by the London legacy Corporation.
The Disability Discrimination Act (DDA) is placing demands of the public sector and industry to make buildings and facilities accessible, usable and safe for disabled people, and there is clearly a gap in a provision for the visually impaired. The research has involved the UK Universities Safety and Health Association (USHA) and considered how tactile symbols could support the Personal Escape and Evacuation Programme (PEEP).
‘This is wonderful, this illustrates so many things; plans are really useful, and it is great to be able to go in a room like for example here the toilets and to know where the basins, the WC and the hand dryers are’
The Starworks Network is a young people’s prosthetics research collaboration. It has taken a co-design approach to bringing children and families together with experts from healthcare, academia and industry, to creatively explore and address the unmet needs in this area.
Funded by The UK Department of Health / National Institute for Health Research (NIHR)
Project led by NIHR Devices for Dignity MedTech Co-operative, Sheffield Teaching Hospitals.
The Lab4Living team was led by Joe Langley and Gemma Wheeler.
There are an estimated 2000 children in the UK living with a form of limb loss and many will use upper and/or lower limb prosthetics from an early age. However, product and service provision for these children is usually based on scaled-down versions of adult prosthetics, which often do not meet their unique functional, social and emotional needs.
In 2016, the Department of Health released £750,000 to build a network of clinicians, academics, industry experts, and crucially, children and families, to support research in this area. It aimed to ensure a balance between ‘clinical pull’ and ‘technical push’ in translating much-needed innovation in child prosthetics into everyday use.
Our regular collaborators, Devices for Dignity (Sheffield Teaching Hospitals) invited Lab4Living to bring a co-design approach to the building and maintenance of this network. We have played a key role in the design, facilitation and reporting of each stage of the project, ensuring that children’s voices were central throughout.
“The Child Prosthetics Research Collaboration led to inventions and optimizations that reflected what children and families need. The experts and academics who develop prosthetics would probably never have heard from families and children how a poor-fitting or unattractive limb can limit a child at home, in the classroom and in the playground.”
(Gary Hickey, INVOLVE)
Needs assessment We engaged children and families across the country through workshops, phone calls and postal activity packs tailored to a range of ages.
Sandpit events A series of four one-day workshops in Salford, Bristol, London and Sheffield, brought the key stakeholders together to creatively and collaboratively explore key challenge areas emerging from the initial needs assessment. We designed a set of bespoke tools to support activities in problem definition, inspiration, ideation, prioritisation, development, pitching and network-building.
We have continued to provide design support to these projects and the Network as a whole, and are pleased to announce that it has been awarded follow-on funding from the NIHR to continue supporting research and innovation in this important area. Starworks 2 has begun and will further engage with all stakeholders to bring new innovations and technologies to children with limb difficulties.
“This, to my knowledge […] is the first of its type in scale and content and hopefully will produce some exciting, useful and relevant developments […] for our paediatric clients, who have sadly, by nature of their relatively small numbers and even smaller voices, been largely ignored by industry and the profession. Empowering the client group that you are trying to help and allowing them a voice in what is being developed for them is surely the best way forward.”
Rose Morris, Clinician, in ‘Attracting innovation in child prosthetics’, The Clinical Services Journal, February 2018, p56-58.
Devices for Dignity MedTech Co-Operative has announced the funding of 10 Proof of Concept projects, addressing a variety of needs for children using prosthetics.
Starworks has raised awareness of co-production methods through coverage in a Nature special issue on Co-production of research, published on 3rd October 2018 and in an upcoming guidance document by Involve (www.invo.org.uk).
A recent article in a clinical journal raises awareness and demonstrates recognition of the potential of the Starworks research collaboration. Raj Purewal, business development and partnerships director at NHS innovation specialist, Trustech, discusses how the project aims to increase progress in innovation in child prosthetics even further in an article for The Clinical Services Journal, February 2018, p56-58.
The Starworks project has supported the formation of collaborations between researchers across the country through Industry Forum events.
Related research on Sheffield Hallam University’s Research Archive