Category: Co-design processes

A diagnosis of dementia used to mean staying home and being cared for. Those who work in the area of dementia are doing their best to change this view. But is the design community prepared to embrace people living with dementia? Paul Rogers reports in Co-designing with people living with dementia disruptive design interventions to break the cycle of well-formed opinions and mindsets. The co-design method has provided ways for people with dementia to continue contributing to society and have fulfilling lives.

The co-design project was to create a new tartan design. Each person with dementia directed the researcher to co-create their digital design one colour at a time.

The paper describes the process in detail. The Disrupting Dementia tartan project shows how co-design methods and tools can enable people living with dementia to make a significant contribution to society after diagnosis. Although dementia changes some aspects of a person, it does not affect their sense of self. Projects such as these not only inform designers, they also give a sense of inclusion and belonging to people with dementia.

From the abstract

This paper illustrates methods for co-designing with people living with dementia in developing a mass-produced product. The research was carried out in collaboration with Alzheimer Scotland using a range of disruptive design interventions. The aim was to break the cycle of we-formed opinions, mindsets, and ways-of-doing that remain unchallenged. The research has resulted in co-designed interventions to help change the perception of dementia.

People living with dementia can offer much to UK society after diagnosis. Co-designed activities and interventions help reconnect people recently diagnosed with dementia to help build their self-esteem, identity and dignity. Co-design processes help keep people with dementia connected to their community, thus delaying the need for formal support,

We worked collaboratively with over 130 people with dementia across Scotland in the co-design and development of a new tartan. The paper concludes with recommendations for researchers when co-designing with people living with dementia.

Altering design mindsets

Breaking Well-Formed Opinions and Mindsets by Designing with People Living with Dementia is a similar paper. You will need institutional access for a free read, or access via ResearchGate.

The paper reports on three design interventions using co-design activities with people diagnosed with dementia. The interventions offer innovations for co-designing with this group.

Academics talk about “vulnerable groups” based on ethics approval language. But what they mean is, people who have difficulty participating because they have a disability, illness, or some other condition. Indeed, some ethics requirements are so protective of “vulnerable groups” that they are exclude them from research projects. Consequently their voices are silenced. So how do we include them in co-design and when?

While co-design is the new buzz word, participatory design has been around in academia for many years. Involving communities in decision-making is now recognised as being responsive to community needs. That means going beyond a one-size-fits-all approach to design. 

Participatory design

Participatory design, or co-design, is about genuine inclusion. That is, not just informing the design, but being participants in the design process. However, involving people with complex needs poses some challenges. It’s easy to make assumptions about their capacity to participate and collaborate. However, this comes down to the way the participation process is designed. 

Participatory design and the inclusion of vulnerable groups is the topic of an article from Finland. They use three projects to compare how participatory design might work best. The first explored co-design activities with people with intellectual disabilities living in supported housing. The second focused on culturally diverse young people experiencing crisis situations. The third dealt with nursing students with learning disabilities adapting to work in the health sector.

Challenges and power dynamics

The article covers the challenges, the power dynamics and their methodology. Each of the three projects is documented in detail. The findings show some similarities between the projects, but when it came to users, there were different outcomes and processes. Participatory design became more challenging when there were more pronounced differences in power dynamics.

These three projects provide good information for involving vulnerable groups in participatory design processes. Questions of equality and genuine inclusion is about both the design activities and how the entire project is planned. 

The title of the article is, Whom do we include and when? participatory design with vulnerable groups

From the abstract

This article makes three contributions to participatory design (PD) research and practice with vulnerable groups:

1. 1. A framework for understanding stakeholder engagement over the course of a PD project.
   2. Approaches to making user engagement and PD activities more inclusive.
   3. An analysis of how the design and power dynamics of PD projects affect vulnerable groups’ participation.

A map of engagement evaluates stakeholder involvement from initial problem definition to design outcome. 

The first looks at codesign activities to support decision-making in the context of intellectual disabilities. The second looks at culturally diverse youth navigating crisis without adequate assistance from public services. The third examines nursing students adapting to work in the health sector without accommodations for learning disabilities.

Comparing the projects reveals patterns in project planning and execution, and in stakeholder relationships. The article analyses how users are defined, engaged and supported in PD; how proxies shape vulnerable groups’ involvement and PD projects as a whole; and opportunities for greater inclusion when the entire PD project is taken into account.

An inclusive design approach means listening.

Health care is a service and like any service, you want the best for your customers. Customer feedback is common with most services, but knowing the problems after the event is not very effective. The first step is setting up a process that is going to get the most useful design decisions. That means co-designing from the very beginning – co-designing the research method.

A new paper documents the process of using an inclusive design approach to design the study. As a report of the process the paper necessarily includes many stories from participants. These stories are rich in information not limited by survey or interview formats and questions. It is up to the listener or researcher to guide these experiences into practical solutions. The methods in this study are applicable to any public service, such as transport or education.

Storytelling and research design

Storytelling often goes beyond describing the immediate barriers and difficulties in using a service to reveal the impact on a person’s life.

Three design exercises

The study reports on three options for design exercises:

Design Exercise Option One: co-designers talk about any part of the health care service that needs re-design. Then the group imagines a future where the barrier no longer exists.

Design Exercise Option Two: co-designers discuss their own or another’s experience during the Covid-19 pandemic.

Design Exercise Option 3: co-designers use the research centre’s “virtuous tornado” exercise. The virtuous tornado is a diagram with three circles, In the centre is the statement, “Like and Use”. The next ring has the statement “Don’t like or have difficulty using”. The outer ring has the statement “Can’t Use”. See the diagram below.

Figure 1 from the report with the three options for activities

Co-design is a hot topic at the moment and this paper adds to the research and ideas of how to run co-design processes.

The title of the article is, Co-Design as Applied to Accessibility in Health Care and comes from researchers based in Canada.

Co-design is the new buzzword in the field of disability. But co-design isn’t only about disability inclusion. It’s a design process that seeks the best design for the intended users. Including people from a diversity of backgrounds, ages, levels of capability and experience is good practice. It’s how you do universal design. But what is it exactly and how does it work? 

The ultimate in co-design is to include users from design concept stage. The next best thing is to include users in testing the first prototype. Many design firms say budget and time constraints prevent them from implementing this highly iterative method. But how much does it cost to remedy poor design and lack of compliance? 

Co-design should not be confused with community consultation which seeks opinions about a design. User testing is not a form of co-design either. Co-design is where designers and users share the power of designing together. Co-design processes work for developing products, buildings, websites, services, policies and guidelines.

Queenslanders with Disability Network (QDN) have published their Co-Design Principles. This document obviously focuses on people with disability and the Queensland context. Regulation, legislation and policies such as the state disability plan fill most pages. 

 Five values underpin QDN’s co-design principles and processes:

• • • Authentic Voice – We ensure those with limited or no voice are heard and valued
    • Collaborative Action – We learn from collective experiences, values, and wisdom 
    • Rights – We believe in a human rights approach 
    • Respect – We value human difference and diversity 
    • Resilience – We are here for the long term.

Co-design processes

A three page summary has the key points above and the co-design processes. 

The starting place – Craft the question that reflects intent/purpose and invites inquiry. 
Build the team – Get diversity and support inclusion
Discovery Phase – See the issue from different viewpoints, and perspectives. Hear from others including those who disagree
Pause and Reflect – Take time to pause and reflect on what you have learnt in the discovery phase and what you still don’t know before jumping to solutions
Sense-making – Look at the data, story, research, and evidence in their raw form and work together to make sense and meaning of what has been gathered
Generate options – Stage where sense-making starts to yield conclusions, ideas
and possibilities, and people get in the creative zone
Developing Prototypes – Generate as many ideas as possible and develop a working example of the policy, service, program, product, or scenario-based solution
Learning, reworking, and refining – Part of the learning cycle and reworks can produce ‘prototype’ – the solution for testing, piloting, or putting into action
Embed what works – Turn it into action and make it real. Keep people engaged and stay accountable.

The QDN website has more information about the organisation and their activities.

See other articles on co-design: The right to participate in co-design, and What does co-design mean? How does it work? 

Consulting people with disability

Consulting people with disability just needs careful planning. Yes, of course it takes time, but all consultation takes time. But it is always worth it because it saves time in rectifications later. 

The United Nations Inclusion Strategy has guidelines for consulting persons with disabilities. The main guideline document is very detailed and links with the UN Convention Indicator 5. It covers representative organisations, when to consult, and how to do it. The Easy Read version is very helpful for everyone. 

The Easy Read version has the key information. It covers the importance of consulting, taking part in decisions, and working with representative organisations. There are links to the 2030 Sustainable Development Goals with the promise of “leave no one behind”. 

One key point in this version is that people with disability should be involved in decisions about everything – not just things to do with disability. 

Some days don’t have 24 hours

Week has seven days and every day has 24 hours. We all know that. But some people don’t have the same amount of time available within 24 hours as others. And it isn’t a case of poor time management. Time gets stolen. So what does it mean when I say, “some days don’t have 24 hours”?

Sheri Byrne-Haber pinpoints the issues in her article in Medium about the disability time thief. Sometimes it’s a few moments here and there, and sometimes it a regular chunk. 

This article shows why consulting with people with disability is not a matter of setting a date and time and sending out the invitation. The time of day and the place are really important considerations. 

The title of Byrne-Haber’s article is We don’t all have the same 24 hours. Anyone who thinks that we do lives in a monster privilege bubble.

Designing inclusively means to do the best you can to include everyone. But conflicts arise when a design feature suits one group and not another. So how do designers decide what is best? This is where designers need help to prioritise features that provide the most social good. And where else to look but to user groups, older people and people with disability.

A thoughtful conference paper discusses some of the underlying philosophy of inclusive/universal design and takes the road of pluralism. The authors argue that inclusive design, if taken literally, is unattainable. Justice and fairness are discussed and the authors frame this as ‘design as a deliberative enterprise’. Two case studies where people with disability were included in the design process provide a practical basis for their arguments.

The title of the paper is, Inclusive Design as a Deliberative Enterprise: The multifold value of involving disabled people in design.

Editor’s note: Taking the dictionary definition of “inclusion” for the purposes of research can be helpful if it aids implementation. Perhaps “universal” becomes a better term because it is not about perfection. Rather it is about the iterative process of continuous improvement to include as many people as possible in designs.

Abstract

Designers are challenged to consider human differences in order to meet the needs of the widest possible audience – the purpose of inclusive design. Yet, paradoxically, taking differences seriously may severely restrict ‘the widest possible audience’. How can design be fair if it is impossible to meet the needs of all? Earlier work on inclusivity and quality in design argued for conceiving inclusive design as a deliberative enterprise that involves both designers and the users they design for. A critical reason to involve the latter is that those affected by design decisions are likely to be best positioned to collect contextual information about the needs and demands to be
addressed.

In this paper, we build on this earlier work to take a more detailed look at the deliberative feature of inclusive design. To this end, we analyze two cases in which disabled people, not educated as designers, are involved in design: the first case concerns disabled students and staff of KU Leuven, who give students in engineering-architecture advice on their design projects; the second case concerns the Accessibility Advisory Council in Leuven, Belgium, which is chaired and composed by disabled people, and gives advice on design projects the city is involved in. The analysis is based on written reports and conversations about the project discussions with disabled students/staff and the Advisory Council.

Through this analysis we show that the value of deliberation in this context is multifold: letting contextual information filter in the design process; allowing users to advance reasons for and against possible design alternatives, and draw attention to implications, inconsistencies, ambiguities affecting the relevant beliefs and preferences; enabling both designers and users to reflect on reasons that can be shared, and putting them in a situation of interaction where they can recognize their interrelation with a group.