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Trails – Enabling Ongoingness

Trails – Enabling Ongoingness

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.

For more information please visit the Enabling Ongoingness Website.

Juvenile Idiopathic Arthritis (JIA) Toolbox to encourage self-management

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

Partners: Sheffield Hallam University, Lab4Living, NIHR CYP-MedTech and Sheffield Children’s Hospital

Project lead: Ursula Ankeny

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)

Initial ideas brainstorm

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.

Workshop engaging children with arthritis and their families

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.

Developing ideas in response to the user’s comments

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
  • Encouraging physiotherapy
  • Help with communication in the classroom
Testing appropriate sizes and shapes using rough prototypes

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.”

(parent participant)
  • 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.”

(parent participant)
Prototyping and testing potential approaches

“Being able to pass tips onto other kids would be so great.”

(child participant with arthritis)
Ursula Ankeny with the Colour In Design Awards (CIDA) Judges ‘One to watch’ prize at New Designers in 2019

Impact

“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.

The Power of Sheffield Journeys

The ‘Power of Sheffield Journeys’ utilizes film and video elicitation to explore the potential of film and digital technology in helping older people and people with dementia to re-connect with meaningful journeys and to build community connectedness.

Funded by Sheffield Hallam University: Catalyst

Partners: University of Northumbria, South Yorkshire Passenger Transport Executive, Dementia Action Alliance, Alzheimer’s Society

Project lead: Claire Craig

It is estimated that globally 47.5 million people have dementia (Alzheimer’s Disease International 2015). At present, no cure exists and consequently emphasis has been placed on the development of approaches and interventions that focus on quality of life and strategies to equip individuals to cope with the challenges that living with this long-term condition brings. 

Creating potential solutions to enable individuals to live in the home environment, to continue to connect with and contribute to the communities of which they are a-part and to engage in meaningful activities is a priority if people are to be supported to live well with dementia.

The ‘Power of Sheffield Journeys’ has explored the potential of film and digital technology in helping older people and people with dementia to re-connect with meaningful journeys and to build community connectedness. The enquiry has sought to understand how the arts (most notably film and photography) can promote social inclusion of marginalized groups. Sixty older people and people with dementia have engaged in the project to co-design a series of films that bring meaningful journeys to life again.

The research has shown that people with dementia have been able to fully engage in the process and that visual methods of video and photo-elicitation are useful methods to gain understanding of the experiences of older people living in the city.

“ This research highlights how design and creative practice can foster a sense of community. Most significantly it has positioned people with dementia as ‘experts’ in creating a rich cultural resource that can be accessed and used by future generations ”

(Claire Craig).

The films have formed the basis of a series of pop-up exhibitions across Sheffield and are currently being used to stimulate and capture further rich oral histories relating to memorable journeys and key points of interest in the city’s history. Even at this point in the research the films are challenging some of the pre-conceptions surrounding the condition and what people with dementia can achieve.

The films are now being used across all of Sheffield Care with residents.

Related news:

Enabling Ongoingness

This research seeks to understand the benefits that design and digital technologies might bring in offering new ways to, firstly, express a sense of who they are in the present, and, secondly, to make objects and media content that will support other people after one’s death

Funded by EPSRC

Partners: Northumbria University; Newcastle University; BBC;  Marie Curie; CRUSE Bereavement; National Council for Palliative Care

Project lead: Claire Craig

Project team: Helen Fisher

The project is a design engagement with older people, people living with dementia, people approaching the end of their lives and people who are bereaved.

We are living in a time when life expectancy is the highest it has ever been (81.5 years average life expectancy in the UK).

However, this positive achievement of medicine and modern ways of living means that as the nature of growing older is changing, so too is end-of-life. Whilst promoting the inclusion of older people in society enriches our social make-up it also gives rise to new challenges.

For example, there is an increasing demand for care, but reductions in resource available to support the older old and a reduction in people using local authority supported care services.

In terms of bereavement, studies have identified a huge hidden cost associated not only with increased mortality of the bereaved but also their increased hospital stay and bereavement-related consultations. In Scotland alone this hidden and latent cost translates into £20 million per year.

Of the 500,000 people who die each year in the UK, currently around 92,000 die with unmet needs for palliative care. The increasingly complex needs of more people who are living longer with life-limiting conditions is positioned by Hospice UK as a current grand societal challenge as the demand for care at the end of life is set to rise steeply between 2016 and 2025.

“This research addresses the big questions to interrogate the meaning of life and death in the digital age”

(Ongoingness participant).

Personal digital content and assets are continuously being created, by us and around us. Through social and personal media we are creating status updates, voice recordings, conversations, videos, photographs and blogs which all contribute to the coalescence of a digital trail and identity. However, what we cannot purposefully do is curate these digital assets to specifically support a sense-of-self, help people deal with their own approaching end-of-life, nor help others deal with bereavement.

This research study therefore seeks to work with individuals facing major life transitions to help curate their digital content through a creative process to embed this within a series of personal digital artefacts that the person will own and which will support them at points of transition (e.g. following bereavement, managing a long term condition).

The Starworks Network

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. 

Proof of Concept projects
From this, The Starworks Network has funded 10 proof of concept projects looking to address issues of comfort, fit, customisation and training.

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.
Funding announced

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.

Raising Awareness

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).

Raising Awareness

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.

Supporting Collaborations

The Starworks project has supported the formation of collaborations between researchers across the country through Industry Forum events.

Resources

Related research on Sheffield Hallam University’s Research Archive

Toilet Talk

This project used creative methods to engage children with continence issues, alongside their parents and/or siblings, in discussing the challenges they face in daily living and in ideating potential solutions. 

Project funded through Engineering and Physical Sciences Research Council (EPSRC). Both groups are National Institute for Health Research Healthcare Technology Co-operatives (NIHR-HTC).

Partners:
Devices for Dignity (Royal Hallamshire Hospital, Sheffield); 
IMPRESS (Incontinence Management & PRevention through Engineering and ScienceS)

Project Team:
Project lead – Dr Joe Langley

Researchers:
Dr Gemma Wheeler (Lab4Living); Nathaniel Mills (Devices for Dignity); Sarah King and Dr Peter Culmer (IMPRESS, Leeds); Chris Redford (Freelance Illustrator).  

Approximately 900 000 children and young adults are affected by incontinence in the UK (BBC 2015), whether as a result of medical problems or issues with toilet training. Although children represent a smaller percentage of the population with continence issues, the impact upon them should not be underestimated. The effect on a child’s wellbeing at school (risk of bullying, potential lack of confidence in participating in social or sporting activities) may have lasting implications for the rest of their lives. Despite this, the effects of incontinence are not well understood and require further research.

To respond to this challenge, a partnership between Devices for Dignity and IMPRESS (Incontinence Management & PRevention through Engineering and ScienceS; funded through the EPSRC) was formed. Lab4Living researchers Joe Langley and Gemma Wheeler were invited to join the team to help design and facilitate a bespoke Family Day event, using creative methods to learn about the lived experiences and unmet needs of children living with incontinence, and their families. The aim of this workshop was to inform future innovation of relevant medical technologies in this area, to better support these families in their day to day lives.

The stakeholders were children with continence issues, their parents and siblings, healthcare professionals, engineers and researchers looking into incontinence and its effects.

Impact

A conference paper, Child-led, Creative Exploration of Paediatric Incontinence, has explored the methods and impact of this project.

A range of bespoke tools was developed in collaboration with an illustrator to creatively and collaboratively explore the challenges faced by children with incontinence issues. These tools aimed to place the young people as the experts in the rooms, reflecting on their wider life (i.e. their hobbies, friends, family) and took an asset-based approach to highlight the skills and resources they already leverage to address their personal challenges. Later, ideation activities were used to empower the families as inventors to highlight and address any unmet health needs.

“What can I say, but ‘what a team!’ I was really overwhelmed by the response from the families – the kids were fantastic and the parents engaged and obviously committed to supporting this in the long term.”

(Dr Peter Culmer, project partner at IMPRESS)

During the workshop, the illustrator visualised emerging findings on a live mural in order to demonstrate progress made through the session and to highlight the value placed on the participants’ input. Central to each of the activities was the aim to reframe a traditionally ‘taboo’ topic as something that is safe, and even fun, to explore through creative means.

A range of ‘blue sky’ ideas generated at the workshop, in response to the challenges identified, was incorporated into a comic (available at: https://tinyurl.com/ToiletTalkComic). Based on this input, two further workshops have been organised by the project partners (including Lab4Living) with children and families to develop a smart watch app to help children develop regular toileting behaviours. Early feedback has been extremely positive; we are currently seeking an industry partner to take this forward.

Impact


This first phase of funding drew to a close at the end of 2018 but the work of IMPRESS continues via the Surgical Medtech Cooperative under their Colorectal Theme.

Resources

Related research on Sheffield Hallam University’s Research Archive will be posted here