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Juvenile Idiopathic Arthritis (JIA) Toolbox to encourage self-management

Juvenile Idiopathic Arthritis (JIA) Toolbox to encourage self-management

This project takes a user-centred approach through needs assessment, co-design, interviews, case studies and usability testing to design and develop a product range to help children with arthritis lead more active and independent lives.

Funded by Sheffield Hallam University, Lab4Living, NIHR CYP-MedTech and Sheffield Children’s Hospital

Partners: Sheffield Hallam University, Lab4Living, NIHR CYP-MedTech and Sheffield Children’s Hospital

Project lead: Ursula Ankeny

SHU supervisors: Dr Joe Langley and Nick Dulake
External supervisors: Nathaniel Mills (NIHR CYP-MedTech) and Dan Hawley (Sheffield Children’s Hospital NHS Foundation Trust)

Initial ideas brainstorm

The problem
Juvenile Idiopathic Arthritis (JIA) is one of the most common causes of physical disability in childhood (National Rheumatoid Arthritis Society, 2018) with between 1,000 and 1,500 children developing it each year in the UK (Silman & Hocheberg, 2002). Despite the commonality of the issue, arthritis in children is often trivialised with many products targeted towards older users highlighting an ignored cohort and the potential for new products.

The approach
This research uses co-design, interviews, surveys through support groups, case studies, sketching, form modelling and prototyping to explore technologies and products to support children with arthritis and their families to enable them to live more active and independent lives. Participatory research methods involving children, families and clinicians has led to a range of prototypes being developed.

Workshop engaging children with arthritis and their families

Paediatric conditions were focused on as children have an entirely different outlook on the world from adults (Cherry, 2018). For younger children, they often have an innate confidence in themselves, unconcerned about how things they do are perceived whilst their creativity is boundless as their imaginations aren’t curbed by rules of logic (Frost, 2016). As a result, this makes them an ideal target market due to their adaptability. For older children, whilst they are more concerned with their appearance and how their actions are perceived, their key driver is increasing their independence and exploring their world, which diseases like arthritis can limit. By encouraging certain behaviours such as self-management of a condition from a young age, it gets them adapted and into the routine. In adulthood then, these early experiences will give them confidence in managing their condition allowing them to live independent lives and reduce potential ‘crisis’ scenarios.

Developing ideas in response to the user’s comments

JIA was chosen as the condition as it is not an uncommon problem yet it is treated as such, with many children feeling stigmatised and isolated. The fact that it is a ‘hidden disease’ can lead to much disbelief with an often long wait to diagnosis- “I was in a lot of pain and started to get bullied as I was different” according to one child participant. With the formation of a new charity called Versus Arthritis in September 2018 following the merger of Arthritis Care and Arthritis Research UK, there was a refreshed campaign for recognition as the condition “steals from millions of people every day” (Versus Arthritis, 2018), the currency of the issue and the extent of the ignored cohort was emphasised, leading to the decision to focus on this area.

Users were at the heart of this project with initial research looking into the needs of the different stakeholders involved: the child, the parent/ carer, the healthcare professional and the teacher. Through this, it became clear how varied the key priorities were within the group:

  • The child wanted “something to help with pain so that [they wouldn’t] have to stop doing fun things”.
  • The parent/ carer, in addition to aids to distract from pain, also wanted something to help keep better track of the condition.
  • The healthcare professional wanted something to help motivate physiotherapy.
  • The teacher needed something to help with disbelief in the classroom.

Initial thoughts about briefs had centred on improving assessment, helping with everyday activities and reducing stigma. The priorities put forward by the stakeholders slightly altered the direction, driving the decision to develop four interventions simultaneously, with each targeting a key need put forward by each group:

  • Helping with pain management
  • A way to keep track more easily
  • Encouraging physiotherapy
  • Help with communication in the classroom
Testing appropriate sizes and shapes using rough prototypes

Through the duration of the six month timeframe, each brief was developed by Ursula to prototype level. Workshops with children who have arthritis and their families were held at the research, initial design, further development and final prototype stage in order to ensure the products were fulfilling a need as well as to tease out issues and potential improvements.
Technical requirements were tested and tweaked to ensure both ease of use and safety whilst the forms were explored through physical models and sketching, taking into account both ergonomic factors of gripping difficulty and aesthetic drivers of wanting something discreet but that also validated their condition.

Outcomes
Four prototypes were developed as part of the final year project:

  • Heat- FIX: A wearable device that helps to distract the brain from the joint pain during a flare. It can be wrapped around any joint and fastened securely in place.

“The warmth of it is really soothing- I love the degree of control.”

(child participant with arthritis)
  • Active- FLEX: A motivational physio tool that has an additional link to a character on the app helping to gamify and incentivise an otherwise “boring” chore. The colours are bright and energising with the gripping texture ensuring ease of use.

“I hate nagging her to do her stretches- this way she’d want to do them.”

(parent workshop participant)
  • Class- COMM: A wearable to help facilitate communication between the pupil and teacher when the child is in pain/ needs help. With a form similar to a Fitbit, the wearable is discreet, helping to reduce feelings of embarassment.

“Teachers have forced her to do PE as they weren’t aware – this would help with disbelief.”

(parent participant)
  • JA- CONNECT: An app with different versions for parents and children to both help keep better track of the condition as well as to create a network so that parents and children don’t feel so isolated in their experience.

“The first thing that clinicians ask when I mention a symptom is ‘do you have a photo?’. This would really help in tracking changes.”

(parent participant)
Prototyping and testing potential approaches

“Being able to pass tips onto other kids would be so great.”

(child participant with arthritis)
Ursula Ankeny with the Colour In Design Awards (CIDA) Judges ‘One to watch’ prize at New Designers in 2019

Impact

“The University, though the Lab4Living research group, already have a strong relationship with both Sheffield Children’s Hospital and NIHR CYP-MedTech, collaborating on a range of projects with both. This enabled Ursula to benefit from research input to her undergraduate work at organisational, operational and technical levels of her project. Subsequently, following graduation, Lab4Living has provided a ready route to enable Ursula to continue her project through to implementation.

(Dr Joe Langley, Lab4Living)

The future
This project has been awarded funding from NIHR CYP MedTech through Sheffield Children’s Hospital, to further develop the product outcomes, which started in October 2019. The development will focus on improving the technology whilst also looking at the connectivity aspect of the products with the app platform. The first goal is to carry out a pilot study, the results of which can then drive further improvements, with the hope being that these products will ultimately go to market.

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

Plymouth Home Based Care Pathway

Developing a new Parkinson’s service delivering home-based care. Using new technology the service will help Parkinson’s patients, carers and healthcare staff monitor a person’s condition remotely – ensuring care remains person-centred. This enables them to ask for contact and review at times they need it, removing the need for time-locked clinic reviews that fail to meet the needs of patients and carers, and contributes to staff stress.

Funded by : 
The Health Foundation
Parkinson’s UK

Project team:
Joe Langley

Rebecca Partridge
Ursula Ankeny

This project follows on from the previous project with Parkinson’s services in the South West Peninsula. These workshops uncovered issues in the way the service is currently run, with time-locked clinics, cancelled and delayed specialist appointments, vacant staff posts and arduous journeys to clinics for patient and carer.

The PKG® device. Image courtesy of Global Kinetics Corporation Limited

Lack of clinic capacity results in limited ability to see those who require urgent review. Even when clinic review is timely and appropriate, the evaluation only captures how the patient is within those few minutes, and is otherwise dependent on patient recall, which can lead to erroneous assessment and inappropriate interventions. This sub-optimal provision of care contributes to staff dissatisfaction, stress and poor retention, which is a cause of significant threat to PD service resilience nationally, with 50% of PDNS vacant posts being due to long-term sick leave or resignation.


This project seeks to develop a new service that monitors symptoms on a monthly basis. It will use a Parkinson’s Kinetigraph (PKG®) a wrist worn, watch style device to monitor motor symptoms and a series of questionnaires for non-motor symptoms. Through this system patients will only need to attend a clinic when required and instead will be supported to self-manage minor changes and fluctuations supported remotely.

Generating and prototyping ideas for resource pack

Through a series of workshops and prototypes, our role within the project has been to help the team develop the new service pathway, understand users’ needs and then co-design a series of training, support and learning resources with staff and patients. These will provide support information on the new pathway and signpost to self-management resources.

The project is due to recruit the first 30 patients to the pathway in September with a further 120 recruited later in the year.

Home care pathway Launch event

Impact
More information can be found here:

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.

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

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.


Parkinson’s services in the South West Peninsula

Parkinson’s Disease (PD) is a highly complex progressive neurodegenerative disease. Individuals experience PD in  a wide variety of ways, leading to difficulty in diagnosis, acceptance and on-going management. Service provision is complex and varied depending on provider. This project utilised a participatory design methodology to identify patient and provider needs for PD services in the South West Peninsula. Then used co-design to develop tools, resources and service structures to meet these.

Funded by : 
Bial Pharmaceuticals
University Hospitals Plymouth NHS Foundation Trust
Sheffield Hallam University

Partners:
University Hospitals Plymouth NHS Foundation Trust
Sheffield Hallam University
Livewell Southwest
People living with Parkinson’s Disease and their family’s/carers
Parkinson’s UK

Project team:
Joe Langley
Rebecca Partridge



Parkinson’s occurs when a small group of nerve cells in the brain no longer produce enough dopamine. This is a chemical that transmits messages from the brain to other parts of the body, enabling people to perform smooth, coordinated movements. Insufficient dopamine messes up these transmissions. Although typically associated with tremors, muscle stiffness and slower movements, it is also associated with a wide range of other symptoms including nightmares and night sweats, hallucinations, reduced facial expressions, depression, loss of taste and smell and ‘freezing’ (where someone suffers a temporary lack of ability to take a step, speak or communicate).

This highly individualised experience leads to difficulty in diagnosis, acceptance and on-going management. There is currently no cure for Parkinson’s so symptoms are managed through a combination of drugs and self-management (exercise, sleep hygiene etc.). The first year following diagnosis is involves many different healthcare professionals such as; Speech and Language Therapists, Dietitian’s, Occupational Therapists, Physiotherapists, a Parkinson’s Nurse Specialist and Neurology Specialist Consultants.

The provision of Parkinson’s services is complex and varied depending on provider. Services in the South West Peninsula cover acute and community settings, cross multiple regional and budgetary boundaries, cover a large geographical and rural area and have staffing pressures from unfulfilled roles, long term sick leave and increased patient numbers.

Participants in workshop three exploring what could be different with information provision.

This project has had a different approach and an interactive style. It’s made me work with people who I would not normally interact with, we have worked with patients and their families. They have been at the heart of everything we have discussed and addressed. It’s been genuine co-design with patients.

Staff member, Sw peninsula parkinson’s service

Participants

  • People living with Parkinson’s and their families and carers
  • Parkinson’s Specialist Nurses
  • Community care teams
  • Therapy Specialists
  • Consultant Neurologists
  • Finance officer
  • Parkinson’s UK Charity representative

To improve the patient and staff experiences of using and delivering services in the South West Peninsula, this project utilised a participatory design methodology to identify patient and provider needs and generate a series of solutions to these needs. A wide range of design research techniques were implemented that included; Lego® Serious Play®, Persona creation, Service Mapping and Prototyping.

Five full day workshops explored

  • What are staff and user experiences?
  • How is the service currently run?
  • What could be different?
  • Idea development
  • Prototyping and Testing


Outcomes

As a result of these workshops, five concepts are currently in development: A Parkinson’s Patient passport; New service and local information; a media campaign; a card deck to support therapeutic sessions; a self-management support and general information package. In addition further funding has been secured through The health Foundation to progress the development of a Home based Parkinson’s care service.

Parkinson’s passport Prototype

I’ve really enjoyed the exposure to different methods and ideas to support creative thinking. It’s challenged me to think outside the box

Person living with Parkinson’s
Information on Demand Prototype

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