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.
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.
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
Dr Joe Langley’s three year fellowship explored the added value of design and making as a form of facilitating co-produced research, and of sharing, synthesising and activating knowledge within participants, systems and organisations. This work resulted in personal development in co-design and co-production and had a particular focus on the impact activities could have on relationships and systemic power structures.
Funded by: National Institute of Health Research (NIHR)
Partners: NIHR CLAHRC YH, Royal College of Midwives, The University of Sheffield, Bradford Royal Infirmary, Sheffield Children’s Hospital, NIHR Devices for Dignity HTC, TITCH Network
Project team: Dr Joe Langley
Background to the NIHR Fellowship programme
£8 billion per year is spent on health-related research and there is increasing pressure to demonstrate a return on this investment. Yet translation of health services research knowledge into everyday practice remains a challenge.
The fellowship programme aims to advance knowledge and understanding about research use, influence and impact. It looks at how research can be blended with other knowledge, such as professional practice and patient experiential knowledge. This opens the door for participatory and co-produced research methods in particular.
Through the Knowledge Mobilisation Research Fellowships, the NIHR enables up to five individuals to explore the mechanisms, barriers and enablers of Knowledge Mobilisation and to mobilise some health services research knowledge into everyday practice.
“Making things together is a great leveller.”
Prof Jo Cooke, mentor
Joe Langley’s three year Knowledge Mobilisation Research Fellowship was the first to be awarded to a researcher from outside the health disciplines. The fellowship has explored the added value of design and specifically making, within the context of co-produced research; of sharing, synthesising and activating knowledge within participants. Joe’s interest in this is focused on the creative, practical activities of ‘making’ employed by designers and applying them in participatory health research and innovation.
During the course of the fellowship, Joe’s research began to focus in particular on the impact those activities could have on relationships, systemic power structures and hierarchies in health and in wider society. The prevailing mode of communication within many such hierarchies is written and spoken language, a mode of communication associated with knowledge – and therefore power.
“This was an amazing opportunity for me to really get ‘inside’ this complex and, initially, slightly alien field. I have a far greater understanding, met some inspirational people, established great relationships and have been able to open doors to expand the work I do.”
(Dr Joe Langley)
Language is often used (consciously and unconsciously) as a means of excluding different ‘tribes’ of people, creating impenetrable barriers of sounds or ciphers that demonstrate (often academic or intellectual) ‘expertise’ whilst ignoring expertise by lived experience.
Design uses a visual language form of communication to share ideas, knowledge, information and complex concepts. In addition, design practice also uses the activity of making things (prototypes, doodles, mock-ups) as a means of thinking, reflecting and considering specific questions and challenges.
When such practices and techniques are shared with other stakeholders in a co-design initiative, and designers or design researchers take on a facilitating role, it achieves two principal things:
making activities enable people to reflect on questions, experiences and
complex ideas before they respond to the question or challenge posed. Hence
their responses are more considered and
they often realise tacit or unconscious knowledge about their experiences that may
not have been revealed through other, more direct forms of enquiry
things they make become part of the
visual mode of communication that augments their ability to collaborate with
others from different backgrounds, creating a more level playing field
This fellowship brings together knowledge, understanding and expertise from multiple worlds:
clinical practice (healthcare delivery)
health services research
implementation, knowledge translation or knowledge mobilisation research
“I am still challenged and sometimes frustrated by a common academic view of the Journal paper as the end goal; as ‘impact’. Sometimes this view is held because it is just very difficult to translate knowledge (words on paper) into actions. There is no escaping this; it is hard. But this is what designers and engineers do. Their disciplines are translational, and there is an opportunity for more academics to collaborate with designers and engineers in their research from the start, not as an afterthought.”
Dr Joe Langley, Knowledge Mobilsation Fellow
Some of these
worlds were less familiar to Joe. Hence, Joe’s methods were aimed at increasing
familiarity with the first three areas and then experimentally utilising the
design methods within them (in co-design settings) to gain an understanding of
what was happening from a Knowledge Mobilisation (KMb) perspective.
“I come from an engineering background and now use design and co-design practises within my research, working with Health Research Scientists, clinicians and patients. This gives me opportunities to use hybrid methods drawing on all these areas. This fellowship has given me a far broader appreciation of how different disciplines, expertise and world views can be woven together to create holistic knowledge that is pragmatic, relevant and works in-practise-in-context.”
Dr Joe Langley
review, which focused on the area of Implementation and KMb, together with participation
at a range of national and international research, clinical and innovation forums
in these areas (including Garfield Innovation Center, Kaiser Permanente, San
Francisco; Karolinska Institutet Stockholm, Mayo Clinic, Rochester,
USA), rapidly increased
Joe’s understanding of Knowledge Transfer (KT), Implementation Science and KMb
(in the field of healthcare).
in a Metabolic Bone centre in Sheffield Teaching Hospitals NHS Trust,
collaborations with YH CLAHRC and undertaking a number of case studies
increased Joe’s understanding of clinical practice and health services
During the fellowship, Joe was mentored by experts from different fields of expertise
Prof Jo Rycroft-Malone (Pro Vice-Chancellor, Research & Impact & Professor of Implementation & Health Services Research, Bangor University) – implementation science
Prof Jo Cooke (Deputy Director and Capacity Lead, NIHR CLAHRC Yorkshire and Humber and Honorary Professor of Health and Social Care Research, Sheffield Hallam University) – applied health research
Prof Paul Chamberlain (Director of Art and Design Research Centre and Lab4Living) – design research
“When Joe was awarded his knowledge mobilisation fellowship the contribution of design thinking and science to implementation research had not been explored. This has changed significantly, largely due to Joe’s work in raising the profile and potential of design science.
During this time it has been a pleasure to work alongside Joe. His creativity, energy and enthusiasm has brought some much needed fresh thinking to how we can improve health and care services through genuine partnerships and the co-creation of knowledge.”
Professor Jo Rycroft-Malone, Mentor
Five case studies emerged through the collaboration with YH CLAHRC and enabled Joe to apply and ‘play around with’ design and co-design practices in health service and health services research initiatives.
Improving midwifery services with and for mid-wives and expectant women – see below
Developing a mental capacity assessment support tool (MCAST) with and for speech and language therapists in community and hospital settings – see below
Development of a testicular volume assessment tool and training kit – see below
Designing gamified smart inhalers with and for school age children – resulting in concepts and working prototypes
Designing an emotional support tool with and for patients on an acute cardiac ward – resulting in concepts and working prototypes for a complex support tool that includes peer networks, paper and digital based components for patients and family members.
Case study #1
Better Births by Design: Improving midwifery services with and for mid-wives and expectant women
In this case study, which focused on improving midwifery services, two midwifery teams (one community team in Colchester and one hospital based team in Preston) participated and were trained and mentored in using co-design as a means of improving their services. An evaluation was carried out by an independent academic from Bangor University nine months later with positive outcomes.
2 years on and both teams still tweet about their co-design and improvement activity.
Case study #2
MCAST: Developing a mental capacity assessment support tool
A toolkit for assessing mental capacity has been developed with and for speech and language therapists in community and hospital settings. The toolkit is currently being tested/evaluated via a clinical trial in Sheffield Teaching Hospitals.
2 years on and both teams still tweet about their co-design and improvement activity.
“I have really enjoyed working with Joe. Using design in health services research has been highly insightful and formative in our thinking about co-production in the CLAHRC, as you can ‘see’ authentic partnership working in action. The process of making things helps to uncover people’s ideas and thoughts, to share them, and provide opportunities for synergy. Making things together is a great leveller and pays attention to power issues in the sharing process.
Design and design thinking should be an important consideration in the shape of future health service research teams.”
Professor Jo Cooke, Mentor
Case study #3
Testicular Volume Assessment: Development of an assessment tool and training kit
In this case study, a prototype simulation model was designed and built to test the accuracy of paediatric endocrinologists’ volume assessment. Once data was collected and evidence of inaccuracy established, we explored alternative approaches to training, co-designing (with endocrinologists and students) a package that included simulation and physical analogies based on everyday objects.
This was piloted in 2017 with one cohort of trainee Paediatric medics and is currently being revised based on the feedback.
Related research on Sheffield Hallam University’s Research Archive
Langley, J., Wolstenholme, D. Partridge, R., Wheeler, G., Bec, R., ‘How can creative co-production processes help to elicit, share and blend different forms of knowledge?’ a workshop for UK Knowledge Mobilisation Forum, Bristol, 6-7 Mar 2018
Ward, V., Harris, J., Carter, L., Dziedzic, K., Jones, C., Lang, I., Langley, J., Wye, L., “Using a story method for critical reflection: lessons and insights from NIHR Knowledge Mobilisation Research Fellows”, Organisational Learning, Knowledge & Capabilities, St Andrews, Scotland, 26-28 April 2016.
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.
Related research on Sheffield Hallam University’s Research Archive
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).
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
CLAHRC- SY Sheffield Teaching Hospitals NHS foundation Trust Physioworks Sheffield
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.
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.