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 ”
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.
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”
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 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
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.
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.
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.