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Compassionate Communities – Network Mapping

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.

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

Journeying Through Dementia

An evidence-based group programme created by occupational therapists and people with dementia for individuals at an early stage of their dementia journey.

Partners: Alzheimer Scotland
Team: Claire Craig & Helen Fisher

Journeying through Dementia is an occupation-based intervention that aims to support people at an early stage of their dementia journey to engage in meaningful activities and maintain community connectedness.

The programme was developed in partnership with people with dementia who spoke of the value they attached to continued participation in everyday occupations and in new learning. Throughout all the co-creation activities, people with dementia were clear that wanted to have the opportunity to access groups that did not just talk about the diagnosis but that offered practical advice and support of how to continue to live well with the condition.

This intervention directly supports delivery of ambition 1 of Connecting People, Connecting Support (Alzheimer Scotland 2017) of enhanced access to enable people to be supported to look after their own health and wellbeing.

Emphasis throughout is placed on ‘doing’ rather than simply talking about strategies and challenges. Individuals are given the opportunity to put ideas into practice either within the group or through organizedout of venue activities. This helps to build confidenceand also encourages active problem solving. The community is seen as a place where skills are enacted and the place where individuals can access a wide range of resources to support roles, maintain and develop relationships and to experience enjoyable leisure activities, which support well-being.

Pilots have been carried out in Scotland with Alzheimer Scotland, Fife Health & Social Care Partnership and NHS Grampian, and the South Carmarthenshire Older Adult Mental Health Team, based in Prince Philip Hospital, Llanelli, Wales. The following video features our Llanelli Journeying Through Dementia Group.

Background

Journeying through Dementia was inspired by a growing number of people living with dementia who were meeting together in their communities to offer each other support. This approach was best exemplified by the work of the Scottish Dementia Working group.

Gail Mountain and Claire Craig (2004) had successfully undertaken research to develop and facilitate an occupation based group aimed at community living older people called Lifestyle Matters which had enabled individuals to connect with valued occupations in later life and to adapt and enact meaningful occupations in the community and this raised the question whether a similar model (peer sharing, group work and didactic teaching) could be used with people with dementia.

Claire Craig then worked nationally with people living with the condition to build understanding of what people with a recent diagnosis of dementia identified as being helpful or resources and support they felt would have increased their quality of life. The results are reported in a paper: What should be in a self-management programme for people with early dementia? (Ageing and Mental Health, 2012)

This research then formed the basis from which Claire Craig developed the initial Journeying through Dementia Intervention. For the next ten years small pieces of funding supported the refinement of the programme and a total of six groups were facilitated, each time people with dementia gave feedback and helped Claire and Helen shape the final iteration of the programme and kit of resources that you see before you now.

With special thanks to Design Futures Packaging for bringing the resources to life.

When I go home from here, I feel better and do more.
The more you do, the more you can do.

Journeying through Dementia participant

I feel we’re helping one another, being on the same wavelength.
I have new friends I don’t think I will ever forget.

Journeying through Dementia participant

The 100-Year Life project

The 100 Year Life Project will exploit and advance the role of design research in enabling older people to lead longer, more productive lives – the longevity effect. Lab4Living has been awarded funding by Research England through their Expanding Excellence in England (E3) fund to support the strategic expansion of research in this area.

Funded by: Research England


Due to higher life expectancies the number of people expected to live to be 100 will increase significantly by 2066. The changing demographics and structure of the population will bring many challenges to society, the economy and services. However this will bring new opportunities for the emergence of new markets, increased involvement in volunteering, longer working lives and possibly providing care for family members. Individuals will need to plan their life and retirement differently with existing ideas of ageing being replaced with models of a multi-stage 100 year life (birth, education, work, education, training, work, career break, education and training).

Age related products, new housing models and care technologies which enable older people to lead more independent fulfilled lives will be considered within this project answering questions on what these products are, how multi-sectorial groups of people will work together, what standards and quality assurances are required for these products and services  and how this knowledge is shared across sectors.

“One in three children born in the UK today can expect to live to be 100 – and by 2066 one in two children will reach this milestone. We need to look at what this expanded life-span will mean for where and how people live; what products will they use; what the implications are for health care, communities, and, of course, the home.”

Prof Paul Chamberlain

Focusing on informing the scale and scope of the Future Home, the project will generate ideas for new aspirational products, protocols and interventions which meet the physical, cognitive and emotional needs of an ageing population within the Future Home.

Related news:

For more information, please contact Julie Roe, Project Manager E3, Lab4Living.

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).

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).

Lifestyle Matters

Lifestyle Matters is a research based intervention which equips community living older people with the skills to re-design their day to day lives. 

Funded by Medical Research Council

Partnered with
University of Sheffield & University of Bangor

Team Lead: Claire Craig

Global ageing has been described as the greatest triumph and challenge of the twenty-first century (World Health Organisation). There is strong evidence to suggest that when older people are supported to engage in meaningful activity they experience increased quality of life and mental wellbeing.

Lifestyle Matters is an intervention aimed at helping older people to help each other to live life to the full. Comprising of group and individual sessions, community living people are enabled to explore the relationship between meaningful activity, health and wellbeing and redesign their lifestyle to embed health-promoting changes into everyday routines.

Research was undertaken in 2005 to build understanding of the experiences of older people, and the intervention was co-designed with older people (Craig and Mountain). Findings of an initial study based on this research showed that the approach empowered community living older people to examine their lives and to re-design the way that everyday activities were undertaken to accommodate some of the physical, emotional and cognitive challenges they faced as a consequence of ageing.

Meeting

Between 2011-2015 the intervention was the subject of a pragmatic, two arm parallel group individually randomised controlled trial (RCT) (Lifestyle Matters vs standard care). In addition to quantitative health outcomes, a purposeful sample of 13 participants aged between 66 and 88 years from the intervention arm of the RCT were interviewed.

“Lifestyle Matters for me was a pointer, a signpost to my future as a single older person giving me some answers to what I might do and what I could do and I would recommend it to anyone.”

(Lifestyle Matters intervention interviewee)

The interviews revealed that the majority of interviewed participants were reportedly active at 24 months, with daily routines and lifestyles not changing significantly over time. All participants described benefit from attending Lifestyle Matters, including an improved perspective on life, trying new hobbies and meeting new friends. A number of intervention participants spoke of adapting to their changing circumstances, and there were significant and lasting benefits for a number of the intervention participants interviewed. 

Cited as the intervention of choice

The intervention was cited in the National Institute of Clinical Health Excellence Guidelines (2008 and 2015) as the intervention of choice to promote mental well being in community living older people.

Commissioned in the UK, used world-wide

The programme is commissioned by mainstream services in the UK and is used all over the world

NESTORE

The aim of the research is to co-design a multi-dimensional, cross-disciplinary and personalised coaching system. Leveraging ICT social connectivity, NESTORE will support older people to sustain independence. The system will operate through tangible objects as well as software and apps.

Funded by Horizon2020.

Partners:
Politecnico di Milano (Polytechnic University of Milan), AGE – Age Platform Europe AISBL, Consiglio Nazionale delle Ricerche (Italian National Research Council), EURECAT – Fundacio Eurecat, FLEX – Flextronics Design S.R.L, FSIE – Fundacio Salut i Envelliment

Project Team:
Lead – Paul Chamberlain
Claire Craig, Nick Dulake, Kathi Chamberlain

The ageing population is growing fast in the EU. ICT can procide solutions for Active Ageing, however the success of novel ICT solutions depends on user perception about their efficacy to support toward health promotion and global wellness.  

NESTORE will develop an innovative, multi-dimensional, personalized coaching system to support healthy ageing by: 1) Generating and sustaining motivation to take care of health; 2) Suggesting healthy nutrition and personalized physical and mental coaching, as well as social interaction, to prevent decline and preserve wellbeing.

Lab4Living is part of the NESTORE consortium which comprises 16 partners from 8 European countries.

Through co-creation workshops with community living older people, the Lab4Living team are building understanding of the hopes and aspirations of participants to gain insights as to what individuals find meaningful, in order to inform the types of activities that NESTORE may offer to engage and motivate end users of the product. The workshops have explored what is meaningful in people’s lives and adopt the ‘exhibition-in-a-box’ co-design methodology developed and facilitated by the Lab4Living design research team. The methodology uses a collection of carefully chosen objects designed to stimulate and prompt conversation, and enable participants to share their experiences. 

“Using the ‘Exhibition in a Box’ methodology has enabled the participants to share in detail some of the factors affecting their perceptions and acceptance of technology, which informs how NESTORE might support older people’s engagement in health promoting activities.”

(Claire Craig, Lab4Living)

A key strength of the methodological approach followed in NESTORE is the engagement of end-users at all stages of the design process. Participatory methods permeate every aspect of the research in order to ensure that the end-product reflects the community’s needs and perceptions.

Working with Lab4Living researchers, the ‘expert-by-experience’ (‘EBE’) group, a group made up of ten older people whose ages ranged from 54-93, have analysed the workshop findings and are recording and sharing their experiences of technology in their every day lives. 

The shared findings will inform the content of the technological development of the system through an iterative process and ongoing dialogue with the ‘EBE’ group.

The research is building understanding of user requirements of the technology and the factors that promote and inhibit use, and will explore other potential contexts where the technology may be used.

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. For more information visit www.lifecafe.org.uk

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. For more information or to order a Life Cafe Kit please visit www.lifecafe.org.uk.

Resources

Related research on Sheffield Hallam University’s Research Archive