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Making Sense Together

Making Sense Together

A space where people with dementia, family members and supporters can come together and explore ways of living well with dementia.  

Project lead: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Scottish Dementia Working Group / Alzheimer Scotland / DEEP Network

Traditionally patient information for people living with dementia is written separately from that aimed at their family members and carers. This research enquiry challenges this genre and through a participatory design research process has developed a resource to enable people with dementia and their family members to make sense of the condition and develop supportive strategies together.

This resource has transformed how we relate to each other. We have completely re-designed our routine, the environment and this has made all the difference in adapting to and managing the challenge that dementia brings.

Support of Person with Dementia

Compassionate Sheffield

​A project exploring what makes Sheffield ‘compassionate’ when it comes to end of life care.

Project lead: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Sheffield City Council

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. A Compassionate City builds on this, covering the civic aspect of our lives; how we can become engaged in compassionate activities in the workplace, churches and temples, our educational institutions etc. Lab4Living are working with the council and organisations across the city to achieve a Compassionate City status in line with the Compassionate City Charter.

Compassionate Communities – Network Mapping

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.

Patient Experience Toolkit

Patient experience is a highly contested concept. However there is emerging evidence and near universal agreement that Patient Experience (PE) feedback is necessary in order to deliver high quality care. In the UK, there is a mandatory requirement to capture patient experience data. This project aimed to explore staff attitudes towards and understanding of patient experience data, and what (if anything) they did with it.

Funded by NIHR HS&DR

Partners:
Bradford Institute of Health Research
NIHR CLAHRC YH

Project Team:
Design Lead – Joe Langley
Rebecca Partridge, Ian Gwilt, Rebecca Lawton, Laura Sheard, Claire Marsh

An initial scoping review was conducted in stage 1 to understand what Patient Experience (PE) measures are currently collected, collated, and used to inform service improvement and care delivery.

Stage 2 was a phase of action research and co-design iteratively combined. This was followed by an evaluation and a refinement of the intervention developed in stage 2 for scale up to the wider NHS context.

Our specific contribution focused on the co-design in stage 2.

A patient experience improvement toolkit was developed through three workshops using participative co-design methods.  Representatives from six wards from three NHS Trusts and a group of six patient/public representatives volunteered to take part in the three workshops. Members of the research team (who did the initial scoping research) also participated in the co-design.

The initial prototype was piloted for a 12 month period through an embedded action researcher process. The action researchers then engaged in a subsequent design consultancy process to refine and modify the toolkit.

A toolkit was developed to support frontline staff to access, collect, analyse, interpret and use patient experience data to identify ward level changes prototypes and sustain them.

It was identified that the data interpretation skills did not typically exist in the ward and so the toolkit was modified to accommodate a data skilled person as a toolkit facilitator. This individual took on many of the characteristics of the action researchers – primarily because the action researchers took up this role in order to keep the project moving forwards.

What was interesting from a co-design and design research perspective was the presence of the action researchers in the extended prototype testing phase and the mediating role that the action researchers took on after this, acting as an intermediary and gatekeeper between the design team and the frontline staff who had tested the toolkit.

This raised interesting questions for us about how to access the right knowledge (from the frontline staff) ‘remotely’ and how to design ‘around’ the action researchers – in our minds was a constant query about the influence the action researchers played in the process and became part of the intervention itself.

Higher order reflections about design researchers working with health sciences researchers and the integration of methods from design research and health sciences were also raised.

The toolkit has since been further refined into the Yorkshire Patient Experience Toolkit (YPET). A coaches network has been established to support ward staff to use the toolkit, and is available as a free resource.

Portraits of Care

This transnational enquiry uses the media of illustration, photography and textiles to explore narratives of ageing in the United Kingdom and Australia. Two parallel lines of enquiry have been developed.

Project team: Claire Craig, Helen Fisher, Fanke Peng

Funded by: Research England / Canberra University

One strand explores the use of self-portraiture as a mechanism through which older people can explore and express a view of ageing from the inside. The second strand presents a view of ageing from ‘the outside’, exploring what can be learned of the experience of ageing when drawing is used as phenomenology.  

This study offers an opportunity to interrogate drawing as a method in understanding the 100 year life. 

‘The act of drawing makes you look more carefully; the more closely you look, the more you see, and the more you see, the more you can draw and the more you come to understand’  

Lucy Lyons

Occupation Based Social Transformation

The term ‘social transformation through occupation’ is used broadly to refer to various approaches that focus on using occupation as a means to restructure practices, systems and structures, so as to ameliorate occupational and social inequities. 

Project team: Claire Craig / Nicholas Pollard

Funded by: European Network of Occupational Therapists in Higher Education

The social transformation through occupation think-tank has brought together a global multi-sectorial group, which includes professionals, service users, researchers, politicians, members of the public, students and teachers. The enquiry explores how communities draw on collective creativity to come together and build assets to support quality of life.  

Members of the think-tank and its associated network which spans over 30 countries, have been gathering information and creating pathways towards actions to tackle health inequalities through an occupation based perspective. The research team focuses on ways to bring together diverse theoretical perspectives and practices to move social transformation through occupation forward. 

Early research has been manifested in an e-book of Case Studies for Social Transformation through Occupation. The e-book shares exemplar case studies generated throughout the research, providing ideas for how such case studies can be used in education and practice.

Analysis of these case studies identified that participants were drawing upon key principles and practices associated with broader models of social transformations, particularly those associated with participatory, emancipatory and community development approaches. Aligned with these types of approaches, participants emphasized the need to:

  • Span a continuum from individual lives to political systems 
  • Incorporate critical examination of power and positionality 
  • Engage critical theoretical frameworks 
  • Build collaborative partnerships across diverse groups 

Thank you for your work and inspiration on this important topic. Congratulations for this fantastic product. I could see this resource being useful for introducing occupation to students in other disciplines. I would like to use the cases as exemplars for my students’ projects in health entrepreneurship. 

Comment from Educator

Me & You

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

Partners: Sheffcare

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. 

Me & You Participant

Place and Space

The move into a care home has been conceptualised as one of the most difficult transitions in later life. At times this transition can be unplanned, occurring as a consequence of a life-event or crisis and individuals may as a result find themselves suddenly placed in an alien environment in an unfamiliar parts of a city. This can lead to feelings of disconnection and dis-orientation. 

Project team: Claire Craig, Helen Fisher

Funded by: Art and Design Research Centre, Sheffield Hallam University

Partners: Sheffcare

The research enquiry ‘photography in care homes’ (Craig 2014) highlighted the importance of finding ways to support residents to gain a sense of place and space and thereby experience a sense of belonging. This was found to be fundamental to wellbeing. 

The present enquiry responded to the findings of this study and was undertaken in care homes in the North of England. Lab4Living design researcher Helen Fisher worked with residents and staff to develop a series of 3-dimensional interactive maps. Through an iterative ‘research through design’ process, a range of tools for orientation and meaning-making were created. These are currently being trialed across a number of care homes.  

Findings to date suggest that the maps act as mechanisms though which individuals are able to communicate important facets of their life and through this process staff in the homes are able to build significant relationships.  

The resources continue to create a focus for meaningful conversations and a way to discover who people are. 

Activity Co-ordinator

Connecting People, Connecting Support Online

Connecting People, Connecting Support is an online space where people with dementia, family members and care staff can access post-diagnostic materials informed by our research programme Journeying through Dementia.  

Project team: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Alzheimer Scotland, Royal College of Occupational Therapists,
Scottish Dementia Working Group

The web-platform was created in response to the COVID-19 pandemic in 2020, which saw many individuals confined to home and unable to access vital services. The web-site was highly successful in providing a platform through which individuals and their families could access the Journeying through Dementia research and it was found to be a positive way to engage with a wide-number of individuals. Within two months of its launch the materials had been down loaded over 30,000 times, formed the basis of interventions used by the Alzheimer Scotland link workers. The research team was invited to offer a webinar to over 150 Allied Health Professionals about the work (see link) and it was cited in the Guardian as an example of best practice in relation to University responses to the COVID-19 pandemic. 

Our clinical support worker has been using the website to focus welfare phone calls for people living alone at home with dementia. They’ve gained quite a rapport from using the topics as themes for their conversations – great work! 

Allied Health Professional

The Scottish Dementia Working Group undertook an evaluation of the materials and feedback was overwhelmingly positive.  
 
The work had formed the starting point of a broader enquiry, which seeks to build understanding of the design qualities and features that can help people with dementia to meaningfully engage with this technology. The next phase of the work will be to test a series of principles and practices that have been developed in the delivery of a group-work intervention on-line. 

I am amazed at what you have achieved in such a small amount of time. 

Allied Health Professional

Carers don’t have the energy to search for things online so having this all in one place is great… People feel like they’ve won the lottery when they see the website!

Allied Health Professional

Click here for Connecting People Connecting Support Online related news items.

Coffee Table Conversations

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. 

Participant