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Connecting People, Connecting Support Online

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.

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.

TacMap

This project concerns the development of an iconic tactile language for use in the production of tactile maps.

Project team:
Paul Chamberlain
Patricia Dieng

Signs and symbols can generally be described as pictographs, literal pictorial representations of the real world, and ideographs that are abstracted ideas of that world. While simple pictographs can relate to particular objects, the implications for meaning can become extremely complex when they become abstracted as ideographs or combined. Chamberlain, with RA Patricia Dieng, investigated whether pictographs, ideographs or abstract symbols used in tactile maps are more appropriate for blind people to conceptualise spatial and environmental concepts and relationships.

The study involved a series of user-workshops with Sheffield Royal Institute of the Blind. Important was how blind users interpreted the tactile qualities of the maps and how partially sighted people interpreted the visual qualities of the map. The aim was to create a communicative link between for people with vision and without vision.

The work has led to a spin out company TacMap which provide a design service utilising findings from the research and create tactile maps for a range of businesses and public services that include South Yorkshire Transport Executive and The Queen Elizabeth Olympic Park by the London legacy Corporation.

The Disability Discrimination Act (DDA) is placing demands of the public sector and industry to make buildings and facilities accessible, usable and safe for disabled people, and there is clearly a gap in a provision for the visually impaired. The research has involved the UK Universities Safety and Health Association (USHA) and considered how tactile symbols could support the Personal Escape and Evacuation Programme (PEEP).


‘This is wonderful, this illustrates so many things; plans are really useful, and it is great to be able to go in a room like for example here the toilets and to know where the basins, the WC and the hand dryers are’

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).

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

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.

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

GRIP: Developing an education resource for people with Low back pain.

This project, funded through the Getting Research into Practice (GRIP) programme, used co-production and creative methods to inform the design of an educational resource for people with lower back pain in Sheffield.

Funded by:
Getting Research into Practice (GRIP) funding programme through National Institute for Health Research Collaborations for Leadership in Applied Research and Care Yorkshire and Humber (NIHR CLAHRC YH).

Team:
Rebecca Partridge

Partners:
Rick Webber – specialist physiotherapist, Sheffield Teaching Hospitals NHS Trust
Cheryl Grindell- Sheffield Teaching Hospitals NHS Trust.

Current UK NICE low back pain guidance recommends patient education to improve self-management, however current evidence on how best to provide this education is unclear. Beliefs associated with a traditional biomedical view of lower back pain can

be a barrier to recovery.
Education that helps people reframe their problem as complex and multifactorial may help patients accept and engage with more positive attitudes and behaviours. Passive information rarely leads to these behaviours.

The creative co-design process applied in this project provided a different approach to the traditional top down method of research and intervention development. It encouraged a collaborative problem-solving approach and fostered a non-hierarchical inclusive approach to knowledge mobilisation.


Stakeholders involved

CLAHRC- SY
Sheffield Teaching Hospitals NHS foundation Trust
Physioworks Sheffield

 


Methods used

To develop the education resource, service users and providers were brought together in two co-production workshops. In the first workshop, we explored the lived experience of back pain. Participants were invited to share their experiences to generate a shared understanding of the complexities of living with and managing back pain.

The second workshop focused on idea generation to support and manage some of the complexities highlighted in the previous workshop. From these ideas, a series of prototypes were developed and tested within Sheffield Physio works.


Project Outcome

New educational resources were developed and have now been implemented within Physio works, Sheffield. The resources include a patient workbook and a series of information leaflets. All these resources are available physically and online.

As a result of patient feedback during the workshop, an improved interactive education session was developed to align to the new resources.