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The Power of Sheffield Journeys

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:

Disseminating positively deviant strategies through creative co-design

The study investigated how creative practice and co-design methods could be used to support the dissemination of positively deviant strategies for improving quality and evidence about newly characterised best practice within elderly patient medical wards. The research was funded through the Evidence Based Transformation Theme of the NIHR (National Institute for Health Research) CLAHRC (Collaborations for Leadership in Applied Health research and Care) YH (Yorkshire and Humber) and is supported by the Translating Knowledge into Action (TK2A) theme

Funded by : 
CLAHRC NIHR YH

Partners:
University of Leeds

Project team:
Paul Chamberlain
Claire Craig
Anne Marie Moore



Positive deviance is an asset-based, bottom-up approach to behavioural and social change within communities. It draws on individual and community strengths and pre-existing resources considered positively deviant (Tuhus- Dubrow, 2009, Sternin and Choo, R., 2000; and Singhal et al., 2010). 

The approach assumes that problems can be overcome using solutions that already exist within communities. Despite facing the same constraints as others, ‘positive deviants’ identify solutions and succeed by demonstrating uncommon or different behaviours (Baxter et al 2016 p.2).

This approach holds much promise and attention has turned to how it might be applied within health service contexts.

If the potential of the positive deviance approach within healthcare is to be realized it is necessary to find ways to identify positive deviant wards, cultures and individuals within complex and ever-changing systems and create mechanisms to communicate what these are to create the potential for their implementation.

Baxter et al. (2015) examined whether a positive deviance approach could be used to identify ward teams that were performing exceptionally well on patient safety and explored strategies for achieving success.

Hypotheses about strategies, behaviours, team cultures and dynamics that facilitated the delivery of safe patient care were generated and 14 key themes representative of positively deviant elderly patient medical wards were identified. These were; Knowing Each Other, Trust, A Multidisciplinary Approach, Integrated Ward Based AHPs, Working Together, Feeling Able to Ask Questions or for Help, Setting Expectations, It’s a Pleasure to Come to Work, Learning from Incidents, Acquiring Additional Staff, Stable and Static Teams, Focus on Discharge, Directorate Support, and Keeping Patients and Relatives Informed. 

Baxter’s study raises interesting research questions, particularly in relation to dissemination and adoption of findings. If the strength of the positive deviance approach is its focus on community engagement and involvement, seeing solutions located within existing resources, how is it possible to translate these findings to other communities/settings/wards which have not been involved in the process? If solutions are internally generated rather than externally imposed how can they be regarded as feasible within the resources of other contexts? What are the implications of this in relation to dissemination and knowledge mobilization?


Co-design workshops were undertaken with participants recruited from a local ward team (site 1). The research team used findings from the co-design workshops to develop a set of interventions and artefact installations designed to embody some of the positively deviant strategies and characteristics. 

The project involved the intervention and installation of the co-created artefacts into sites 1 and 2 (not involved in the co-design):

The study research questions were as follows: 

1)  Can creative co-design help ward teams to disseminate positively deviant strategies? 

2)  Does using creative practice and co-design methods to support the dissemination of positively deviant strategies have an impact on the ward? 


3)  What is the experience of being involved in this process for staff on the units?

4)  Is there a difference in the experience and impact of the critical artefacts between wards engaged in creative practice and co-design of creative interventions and those that were not? 


5) Which types of creative co-design methods work well in this context? 


‘The books have gone down a treat with established members of the team as well as new starters’..

An evaluation is currently being undertaken with participants from both sites to explore whether there was a difference in the experience and impact between wards engaged in the creative practice and co- design of the critical artefacts in comparison to the ward that was not. It will reflect on  how the artefacts had been utilised and any possible strategies that the wards have found useful in relation to identifying and implementing positive deviant behaviours

frailsafe

Funded by : 
Health Foundation

Partners:
British Geriatrics Society
Sheffield Teaching Hospitals NHS Foundation Trust
Age UK
Evaluation Partner : NW London CLARHC
Royal College of Physicians

Project team:
Paul Chamberlain
Rebecca Partridge

This project explores opportunity for design beyond the creation products and focuses on how design might help change culture and behaviour within a health care environment to improve the safety of frail older people admitted to hospital. frailsafe was created to explore whether a check and challenge approach could be translated into the complexity of acute medical care and safety of older patients. The project was was supported through the Health Foundation as part of the Breakthrough Series designed to help organizations by creating a structure in which they can easily learn from each other and from recognized experts in topic areas where they want to make improvements.

International studies indicate that approximately 10% of all patients who are admitted to hospital suffer some form of adverse event (AE). An AE can be defined as an unintended harm to a patient resulting in injury, death or a prolonged admission. Older people are more likely to suffer AEs and the consequences of an AE are often more severe in frail, older patients.

12 hospitals were purposively sampled to replicate the proportion of patients in District General / Teaching and Urban / Rural settings around the UK.
Design researchers were involved more than 100 hours across the 12 hospitals shadowing different health professionals, following ward rounds, board rounds, triage meetings, handover discussions and multidisciplinary (MDT) meetings.
In addition three two-day residential learning sessions located away from the immediate local pressures of work were scheduled over the duration of the project. These offered a creative space to collaboratively engage through a series of Design activities that were developed and facilitated by the design researchers.

Staff found their participation in the improvement team as one of the most rewarding aspects of the project and showed spill-over effects in the wards. The project provided a platform and protocols for increased multidisciplinary working and enhanced communication on what constitutes good care for older patients in AMU.

In addition to co-designing with hospital staff a series a videos were co-created with older people to explore the notion of frailty from a personal perspective.

The research highlights the scope for designers to facilitate co-design that can be embedded as a lasting legacy in communities helping them to learn from each other through improved communication and empowering them to create and implement their own new ideas. 

Stigmas

Stigmas is a collection of furniture that embody issues relating to the physical, cognitive and attitudinal challenges older people face in everyday life. these critical artefacts do not present solutions but a series of considered questions that illuminate a landscape of old age.

Funded by : 
British Council

Partners:
Chang Gung University, Taiwan.
University of the third Age

Project team:
Paul Chamberlain

Design is as much about searching for the question as seeking the answer

Stigmas have been a feature of the engagingaging series of exhibitions.

The Stigma chairs won major prize in the ‘imagining chairs’ category of the ‘Art on Chairs’ international Design Competition (Parades Furniture Design Pole & Design Institute for Design, Media and Culture Research, Portugal). The chairs also features as an anchor point on the Art on Chairs exhibition, Parades , Portugal (2012) and Bilbao, Spain (2013), resulting in collaboration with furniture manufacturer Jose Fernando Loueiro Dos Santos Ltd to produce the chairs.

Stigmas were also exhibited at Insight2 :engaging the health humanities exhibition, University of Alberta, Canada (2013)

The engagingaging series of exhibitions has been hosted at a number of venues including: the Museum of Contemporary Art, Taipei; Building Centre, London; the Taipei Cultural Centre; and the SIA gallery, Sheffield, and underpins a collaborative project with Chang Gung University and Chang Gung Memorial Hospital, Taiwan (British Council PMI CONNECT funded).

The Stigma chairs won major prize in the ‘imagining chairs’ category of the ‘Art on Chairs’ international Design Competition (Parades Furniture Design Pole & Design Institute for Design, Media and Culture Research, Portugal).

engagingaging

engagingaging was a transnational programme of research that sought to understand the needs, preferences and aspirations of older people in order to inform the design of products and systems to support independence and wellbeing in later life.

Funded by : 
British Council

Partners:
Chang Gung University, Taiwan.
University of the third Age

Project team:
Paul Chamberlain – Team lead
Claire Craig

engagingaging was a transnational programme of research that sought to understand the needs, preferences and aspirations of older people in order to inform the design of products and systems to support independence and wellbeing in later life.

‘Engagingaging was a fresh approach and broke the rules on what we normally expect from an exhibition. It dealt with some difficult and controversial issues in a friendly and accessible way’
Curator museum of Contemporary Art , Taipei, Taiwan”.

The concept of ‘The Exhibition’ is embedded within the culture of Art & Design and has a long history as a form of ‘gathering’ to prompt discourse. This research explores the role of the exhibition as a ‘theatre for conversation’ and its role and format as a research tool as well as a means of dissemination.

The research is based on the principle of engaging users through a programme of workshops, integrated with the exhibition, to illicit a better understanding of user-needs, which in turn inform design activity. The enquiry was predicated on the premise that older people offer a valued resource and asset to families, communities and society.
The starting point of the research, funded by the British Council, was a comparison of the experiences of older people living in the United Kingdom and Taiwan.

Within the exhibition a collection of furniture entitled ‘Stigmas’ embodied issues relating to the physical, cognitive and attitudinal challenges older people face in everyday life. The critical artefacts did not present solutions but posed a series of considered questions that illuminated the landscape of old age.

The engagingaging series of exhibitions has been hosted at a number of venues including: the Museum of Contemporary Art, Taipei; Building Centre, London; the Taipei Cultural Centre; and the SIA gallery, Sheffield, and underpins a collaborative project with Chang Gung University and Chang Gung Memorial Hospital, Taiwan (British Council PMI CONNECT funded).

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).

HOSPITAbLe

The challenges society faces in providing future healthcare suggests significant rethinking of the way health services are delivered and the way we engage with them. There is recognition that this is likely to demand more self-care and the shift of care from hospital to home.  This collection of objects explores implications of this shift in both the culture and practice of health interventions. 

Funded by:
NIHR CLARHC Yorkshire & Humber
Art & Design Research Centre

Partnered with
The Waag Society, Amsterdam; Gallerie UM, Prague

Project Lead: Paul Chamberlain

 

The home and hospital bring together very different cultural practices and environments, and the inexorable geographical shift in care has potential to impact on our physical and emotional relationship with our home space.

While professional care support within the home may be beneficial to the informal carer and care recipient, they also transgress the social space of the home and challenge its symbolic.

“The role of the designer
is that of a very good, thoughtful host anticipating the needs of his guests”.

Charles Eames

If we are to assume a greater uptake of healthcare at home to relieve pressures on current systems of delivery, we must not simply develop solutions and focus research within the narrow boundaries of healthcare. Solutions will only be successful if they fit with the complexity of our lives. Therefore there is value in taking everyday experiences as a starting point. This research draws on the value of thinking with things through physical metaphors, engaging people in meaningful ways to elicit their understanding. 

Theatrum Anatomicum, WAAG Society, Amsterdam

“The things we use and make (technologies) are not neutral objects but embodiments of ourselves and cultural values. Where a disconnect between the technology and these cultural values emerge this impacts on the individuals relationship with the world”.

Greenhalgh

The HOSPITAbLe collection reflects upon and imagines an ambiguous future domestic landscape that presents hybrid functionality and a confused visual language and soundscape. A transient world of semi-alien and alien objects that not only challenge trust, but prohibit control and access. New objects defined by emerging technologies that at times attempt to hide and camouflage. The definers and providers of these future objects being ever more concerned with our health and safety, nudging us into behavioural change but fearful of litigation. An interconnected landscape within which access to health data and information is ubiquitous, incomplete and confusing. Objects that help, support, betray and confront our own mortality

“The invasion of illness- related technology into the home has the potential to destroy the nurturing and therapeutic environment of home as a means of promoting health recovery.”

Gardner

The HOSPITAbLe Collection was exhibited in 2017 at The historic Anatomical Theatre at the Waag Society, Amsterdam, the UMPRUM Gallery Academy of Arts, Architecture and Design, Prague, and the Museum of Scotland, Edinburgh. In 2018 the collection was exhibited at the Yorkshire Artspace Gallery, Sheffield and at the NIHR Health Services Research UK conference, Nottingham.

A booklet to accompany the exhibition is available here.

 

Future Bathroom

This project aimed to improve the quality and design of bathroom furniture for older people with the goal of producing products which all bathroom users find acceptable as well as meeting the specific needs of older and disabled people.

Funded by: Engineering and Physical Sciences Research Council (EPSRC), Ideal Standard

Partners: British Council, Vitra and Istanbul Technical University

Project team: Paul Chamberlain, Heath Reed, Maria Burton and Andy Stanton

The need for user engagement in the design process is particularly acute when the target user group has specific requirements which may not be fully appreciated by designers. The focus of this research, designing to support older disabled living is one such problem. The specific domain of interest, that of the bathroom, provides a number of challenges to user-centred design methodology because of the highly personal, sensitive and intimate nature of the activities that take place there.

“I don’t wash my hair in the shower because when I close my eyes I feel unsafe. I wash it in the sink after my shower.”

Female, 70.

“I never thought I would have trouble getting out of the bath but I do.”

Male, 75.

“Things have changed since we moved here – as you get older, things change a lot.”

Female, 63, with arthritis.

The aim of this project was firstly, to develop a robust methodology for fostering co-design dialogue between designers, researchers and people (aged 50+) with chronic age related health conditions which lead to disability and frailty. Examples include arthritis, osteoporosis, stroke and macular degeneration.

Secondly, it aimed to develop a range of innovative and desirable bathroom concepts that are sensitive to the problems of living with disability, which do not stigmatize, are capable of manufacture and will demonstrate the principles we have developed.

The three-year project, funded by the UK Engineering and Physical Sciences Research Council, involved end users, predominantly older users, and Ideal Standard, one of the largest global manufacturers of bathroom products.

Creative approaches were adopted to prompt discussion on bathroom behaviour, often considered taboo, such as the recruitment of older ‘community lay researchers’ who visited older people in the community and the implementation of public field labs.

In addition, quantitative data was collected (via motion capture, high speed cameras and thin film force sensors) through observational studies undertaken in a simulated bathroom environment.

The research evolved to explore further the cultural behaviour of bathroom use through a further project ‘loo-lab’ which was funded by the British Council in collaboration with Istanbul Technical University, industry partner Vitra and older people living in Turkey. The project featured in the Foundation for Assistive Technology, Annual Parliamentary Report UK.

A bathroom design guide for users, ‘If only I knew then what I know now’ (endorsed by Age UK) was published from the findings.

The Lab4Living researchers on this project were Heath Reed, Maria Burton and Andy Stanton.

“If you are interested in designing your bathroom to better suit your needs as you grow older, then this will be a useful guide. We always welcome advice based on sound evidence produced by expert researchers, as we have in this leaflet.“

– Professor James Goodwin, Head of Research, Age UK, 2011.

Project Impacts

Included in NIHR Dissemination Centre Review

Future Bathroom is included in the recent NIHR Dissemination Centre Themed Review ‘Help at Home‘ (December 2018, doi: 10.3310/themedreview-03345)

Most Innovative Design

Outcomes of the project were awarded ‘Most Innovative Design’ in 2017 by the Over 50s Housing Association, UK.

Included in parliamentary reports

The Foundation for Assistive Technology (FAST) produce an annual parliamentary report about R&D in Assistive Technology (AT). Included in the 2009-10 report and 2011-12 report.

Work Exhibited

This work was included in the 2009 EPSRC Pioneers exhibition at Olympia, where it was praised for its innovative research methodology and its focus on the training of older people as community researchers. The Foundation for Assistive Technology (FAST) produce an annual parliamentary report about R&D in Assistive Technology (AT). Included in the 2009-10 report and 2011-12 report.

The Life Café

The Design to Care Programme seeks to rethink how palliative and end of life care can be provided equitably, efficiently and sustainably for future generations. The Life Café Kit is a result of the programme, and is designed to promote and support conversations about what individuals find meaningful in life and in care.

Funded by Marie Curie
Partnered with University of Cambridge

Team: Helen Fisher, Claire Craig, Paul Chamberlain

Drawing on long-established ethical principles, the UK General Medical Council articulates good end of life care as that which ‘helps patients with life-limiting conditions to live as well as possible until they die and to die with dignity’ (GMC 2009 p.3).

The last decade has witnessed a demographic change on unprecedented scale.

People are living longer and with more complex, long term conditions such as cancer and dementia. Our palliative and end of life care services will be required to meet the needs of our ageing population under increasing pressure.

The Life Café is one of the outputs of the Design to Care programme which seeks to rethink how palliative and end of life care can be provided equitably, efficiently and sustainably for future generations.

The community engagement aspect of the Design to Care programme focuses on understanding what is important to different individuals in life, in care, and towards end of life. A methodology has been developed by researchers at Sheffield Hallam University’s Lab4Living, to enable research to be gathered in an informal, comfortable manner within existing community groups and familiar environments. This has been named the Life Café.

“This has made an incredible difference to me today to share these things and listen to you all.”

Life Café Participant

“Good care is ‘talking, listening, communicating, trusting, consistency, choice and time.”

Life Café Participant 

Taking the method of ‘exhibition in a box’, a form of object elicitation developed by Chamberlain and Craig (2013) as the starting point, this study curated a series of creative activities, to scaffold thinking and to prompt conversation. The Life Café is comprised of a variety of critical artefacts, activities and resources, co-developed with community members, that have been used to gather stories, experiences and ideas to support the design phase of the project. 

Our iterative methodology of using resources and artefacts, analysing data, generating themes, then modifying the resources has been a form of behind-the-scenes co-design. Participants have shaped the contents of the Life Cafe and enabled others to talk about sensitive topics more easily, without really realizing. This iterative co-design process has occurred through every element, activity and resource included in the Life Café Kit, even the graphic design and the packaging design.

11 Life Cafés facilitated 141 participants 

In the first phase of the Design to Care Programme, 11 Life Cafés have been facilitated with a total of 141 participants (from groups including chaplains, faith groups, coffee morning socials and mixed community groups), using convenience sampling. 

The Life Café Kit

Life Cafés were continued to develop a kit for independent facilitation. The life café has since been independently facilitated within 2 community groups, a care home and a hospice. The feedback from this will be consolidated and incorporated into the final version of the Kit. We have increasing interest in the Life Café Kit, not only for community groups but for use in schools, carer groups, staff training etc. to open the conversation up and bring awareness to organisations.

The Life Café as a method of eliciting the experiences of individuals in the context of meaning and care has been very successful. Particularly notable was its ability to enable community groups through this process to identify strength and mobilise knowledge and action. This sits well in the context of building compassionate communities.

The Life Café has elicited insights into how individuals conceptualise and describe good care, and a recognition of the pressure points in relation to delivery. The research offers glimpses of what better care might and could look like in the future. Future research will continue to utilise this method with other groups (health and social care staff, trusts and CCGs, carer groups, community groups etc.) to continue to build understanding in order to inform the redesign of end of life care provision.

Resources

Related research on Sheffield Hallam University’s Research Archive