Introduction

Design does not only result in form and function, it also results in feelings, affecting our state of wellbeing (Gaudion et al., 2014). The evolution of health care services could actually be described, following the same paradigm changes, from centralised and sequential models of value creation to more distributed and open paradigms, where citizens are looked at as co-creators of their own wellbeing (Freire and Sangiorgi, 2010). Especially, in the case of participatory design, participation shares an obvious similarity with the concept of wellbeing, as they are both highly contested, internally diverse umbrella terms (White & Pettit, 2007).

Wellbeing is a complex notion with many different dimensions whose definition is disputed (Mattelmäki & Lehtonen, 2006; White & Pettit, 2007). It is a broad concept that represents an individual’s overall quality of life. Studies of wellbeing can be categorised into two separate but interrelated traditions: objective wellbeing and subjective wellbeing research (Desmet & Pohlmeyer, 2013). Objective wellbeing is the degree to which external requirements for having a high quality of life are met (Keinonen et al., 2013). Subjective wellbeing can mean different things to different people (Dolan & Metcalfe, 2012; Diener et al., 2002). Thus its meaning is determined by a number of factors, including people’s culture, values, preferences and relationship with the world in which they live (Gaudion et al., 2014). Within the context of this chapter wellbeing refers to a positive state of being that includes the interconnected dimensions of external and internal as well as physical, mental and social wellbeing.

The opposite of wellbeing is ill-being. This is defined as the negative affect and refers to physiological complaints and a state of worry that develop from a perceived sense of low personal competence, a lack of control and planning over life, socioeconomic deprivation and a poor family situation (Heady et al., 1984 in Boyko, 2017: 261).

Designers have a social responsibility to design products and services for the common good. Design should therefore also promote healthy behaviour and enhance wellbeing. However it is not always clear at the time of design, to know what constitutes wellbeing for the intended users, and how this product, service or environment may affect that wellbeing. This knowledge may be difficult to gather because design typically concerns products or services that do not yet exist (Van de Poel, 2012). This is where co-design can have a real impact, by designing ‘with’ as opposed to designing ‘for’ people.

Co-design and participatory research methods

In this chapter, co-design is defined as collective creativity as it is applied across the whole span of a design process. Its practices are understood to be situated within the broad range of participatory design (Sanders & Stappers, 2008; Simonsen & Robertson, 2012). Participatory design has its roots in Europe where labour unions raised the public awareness of the interrelation between technology in the workplace and its social effects (Muller & Kuhn, 1993; Simonsen & Robertson, 2012). It originated in Scandinavia in the late 1960s as workers pushed for input into the design of technology being introduced into their workplaces (Schuler & Namioka, 1993). It involves the interaction of stakeholders at all stages of the design process.

According to Sanders and Stappers, co-design ‘refers to the creativity of designers and people not trained in design working together in the design development process’ (2008, p. 7). Co-design presents a fundamental shift in the traditional designer–user relationship. The co-design approach enables a wide range of people to make a creative contribution to the solution but, critically, also to the formulation of a problem, a task that was previously predominantly led by designers. This approach goes beyond consultation by building and deepening equal collaboration between users and designers at resolving a particular challenge. A key element of co-design is that users, as ‘domain experts’ of their own needs and experiences (Visser et al., 2005), become central to the design process. In this process the designer’s role shifts from that of a translator (of user experiences/needs) to that of a facilitator (Sanders and Stappers, 2008), providing ways for people to engage with each other as well as providing ways to communicate, be creative, share insights and test out new ideas. Building and deepening equal collaboration between users and designers is a critical aspect of the co-design philosophy (White & Pettit, 2007). Engaging with each other, communicating and sharing insights is an important part of co-design, as it helps to develop an empathetic relationship between researchers and research participants. This contributes to an improved understanding of the research domain and the issues that research participants, as experts in their own domain, encounter.

The co-design process begins with the ‘pre-design research phase that focuses on the larger context of experience’ (Sanders & Stappers, 2014, p. 8) and often makes extensive use of probes. This is followed by the generative research phase, where generative tools are mainly employed (Stappers, 2006). The generative research design phase is followed by a more ‘traditional design process where the resulting ideas for product, service, interface, etc., are developed first into concepts, and then into prototypes that are refined on the basis of the feedback of future users’ (Sanders & Stappers, 2008, p. 5). Finally, ‘post-design research looks at how people actually experience the product, service or space’ (Sanders & Stappers, 2014, p. 8).

Co-design and participatory design for wellbeing

Given the close association between participation and wellbeing (as presented in the Introduction), there have been numerous research projects employing co-design research methods that enhance the wellbeing of their target audience (Mattelmäki & Lehtonen, 2006; White & Pettit, 2007; Crivello et al., 2009; Wallace et al., 2013; Giorgi et al., 2013; Tsianakas et al., 2015; Treadaway et al., 2016; Myerson & Ramsen, 2017).

This includes projects aimed specifically at enhancing or improving the subjective wellbeing of individuals, typically living with a chronic health condition. For example, projects aimed at people living with dementia, where co-design methodologies are used to design tools that facilitate reminiscing to enhance a sense of personhood (Wallace et al., 2013; Giorgi et al., 2013). Other projects such as the work of Treadaway et al. (2016) have focused on supporting people living in the moment and generating positive moods.

There are also co-design research projects, which focus beyond people living with chronic disease, to their caregivers. For instance, Tsianakas et al. (2015) have developed a complex intervention for caregivers that was co-designed by staff and caregivers of patients starting chemotherapy looking at their emotional wellbeing. They conducted a fully powered randomised control trial to evaluate its efficacy and it was found that that caregivers felt reassured and supported emotionally by the intervention. This is in contrast to previous reports of caregivers feeling isolated by, and distressed with, their carer role and the emotional ‘burden’ it generates (Tsianakas et al., 2015). Thus the intervention developed had a positive contribution to carer’s emotional wellbeing.

Other projects have explored the use of participatory methods in international development research and ask what contribution these can make to the definition and measurement of wellbeing (White & Pettit, 2007). The Young Lives project, for instance, following the lives of 12,000 children in Ethiopia, India, Peru and Vietnam, developed a methodology based on child-focused qualitative and participatory approaches to capture what children, caregivers and other community members understand by child wellbeing and how these understandings change over time (Crivello et al., 2009).

Other research projects have focused more on the use of co-design as a process for generating wellbeing as opposed to a tool for developing wellbeing-related interventions. The EU-funded Active@work project explored how one could enable and support individual workers’ sustainable wellbeing and increase the motivation to work longer. They found that giving ageing workers the possibility to actively participate in the design of the workplace environment helps in enhancing physical, social and cognitive wellbeing (Mattelmäki & Lehtonen, 2006). Moreover, the RCA–Gensler Workplace and Wellbeing study provides evidence that participation in the design of the workplace can have some beneficial effect on wellbeing at work. They explored giving employees a greater sense of control over their work environment through participation in the design of their workspace. They co-designed a ‘Life and Light’ intervention with the research team. This comprised the introduction of plants in the space, a range of salad crops, and herbs and chillies to eat that the team would cultivate. Additionally, blinds were fully retracted to increase light. At the end of the study it was observed that teams of workers who were engaged in the participatory design project at any level (whether high or low participation) registered higher levels of mental wellbeing than the team not invited to participate (Myerson & Ramsen, 2017).

Case studies

The following two case studies present projects that employed co-design research methods aimed (i) at the wellbeing of people living with Parkinson’s, and (ii) people living with dementia.

Living Playfully

Living Playfully was a research initiative aimed at scoping potential research in the area of playfulness and Parkinson’s. The main goal was to facilitate and empower people affected by Parkinson’s and their caregivers to co-design research from the bottom up. The focus was to have the research questions set by people living with Parkinson’s, recognising their tacit knowledge and experience on what works best for them. This was done by offering people the opportunity to voice their needs, views and aspirations and to drive the formation of a research project, rather than simply participate in the research.

The scoping exercise engaged four local Parkinson’s UK groups in the north-west of the UK (a total of 75 people, of whom 44 were female and 31 male; age mean 72 years; MDS-UPDRS Scale¹ slight to moderate), exploring any potential value for playfulness in order to increase motivation, perceived control and subjective wellbeing.

People affected by Parkinson’s disease can experience significant impairments in their quality of life. A number of contributing factors exist, but one construct increasingly seen as important in positively affecting quality and life, is ‘perceived control’ (Rotter, 1990). Perceived control in relation to an illness such as Parkinson’s disease can be defined as an individual’s belief in their ability to control the progress of the disease generally and symptoms more specifically (Eccles et al., 2011; Delaney et al., 2012). Evidence also suggests that control can be manipulated therapeutically, with concomitant effects on psychological wellbeing (Weiss et al., 2016). Play and playfulness can add joy to life, relieve stress, supercharge learning, stimulate the mind, boost creativity and connect us to others and the world around us (Gordon, 2014). Play has the potential to foster greater motivation by satisfying three fundamental human needs: the needs for competence, autonomy and relatedness (Tieben et al., 2014). Growing evidence from research reveals that playfulness could serve to promote physical and emotional health, subjective wellbeing as well as greater levels of physical activity in later life (Staempfli, 2007; Fozard et al., 2009; Proyer, 2014; Van Vleet & Feeney, 2015).

Two co-design workshops were run with each of the four groups (between May 2016 to March 2017). These workshops employed very creative, visual and playful tools to empower people living with Parkinson’s and their caregivers to express their lived experiences, set research priorities, develop new ideas and concepts and provide feedback. An important aspect of the workshops was inclusiveness and playfulness, so that all group members were involved and most importantly had a great time in doing so. Each of the workshops with each Parkinson’s UK group produced: (a) a list of priorities for people living with Parkinson’s and their caregivers, where research should be focusing (see Figure 8.1); and (b) a number of concepts and ideas for the design and development of interactive playful interventions for improving motivation, movement and perceived control in the home environment. Table 8.1 illustrates the top priorities for people living with Parkinson’s. This includes several of the priorities already identified by Parkinson’s UK² as well as ones specific to the four groups engaged with the co-design activities.

Figure 8.1  Priorities as selected by people with Parkinson’s for improving their everyday life.

Table 8.1  The most important priorities for improving everyday life for people living with Parkinson’s

Ranking	Priority
1	Laughing more, having more fun
2	Keeping physically active
3	Doing things without feeling stressed, worried or anxious
4	Getting around safely without worrying about falling
5	Sleeping better
6	Improving memory and focus
7	Keeping mentally active
8	Spending time with friends/family
9	Dedicating time for my hobby
9	Doing/trying new things
10	Gaining finer control of hands and fingers
11	Coping with unwanted or uncontrollable movements

A total of 24 unique ideas for interactive playful activities/interventions for improving people’s motivation and subjective wellbeing were developed. One of these ideas was taken forward and developed into a proof-of-concept prototype, which was pilot tested with one of the existing Parkinson’s UK groups (22 people).

Beyond the impact this case study had in the formation of a new research proposal, it created additional value to researchers and workshop participants alike. The research scoping initiative opened a door for the research team to develop research interests in new forms of care and support how they matter in the context of involving playfulness to mediate experiences of chronic disease, as the following research quotes demonstrate. For workshop participants it generated a sense of value and a space for the creative exploration of potential interventions based on their implicit knowledge and experience of their condition.

Furthermore, all the connections, exploratory conversations, theoretical research and work have reshaped not just our research, but have also transformed the research team and our vision of our future practice. We felt that in the context of the workshops we were both (researchers and participants) sharing, learning, taking more control and having an enjoyable time that spanned beyond talking about research but life too. As such, we found there was an increasing interest in continuing to work together as co-researchers with people affected by Parkinson’s. This case study demonstrated several points. First that the act of involving people in co-designing interventions aimed at increasing subjective wellbeing through playful means generated positive moods, such as a greater sense of value. Second, it showed that the implicit knowledge and experience of people living with chronic conditions, such as people living with Parkinson’s, are well suited in co-designing interventions for subjective wellbeing, leading to research agenda setting and innovative concepts for researchers to take further.

Ageing Playfully

Social isolation is increasingly acknowledged as a major problem for people with dementia and their carers in the UK (Alzheimer’s Research UK, 2018). As Alzheimer’s Research UK (2013) found, 35 per cent of people with dementia (PWD) go out once a week and 28 per cent have stopped going out of the house; 23 per cent have had to give up doing their own shopping and 9 per cent say they have given up doing everything. Of those respondents, 35 per cent wanted more support and 14 per cent wanted to access activities, but they explained that lack of confidence was one of the biggest barriers to accessing activities. People with dementia were found to be afraid of becoming confused in public and getting lost, or of being a burden to their family or carers. These feelings can leave them isolated and depressed.

The research project ‘Ageing Playfully’, was developed in order to explore co-design with a small group of people with dementia and their carers, within a series of participatory arts workshops (for a detailed description of the research design see Escalante et al., 2017). Several workshops were set up, which included an introductory session followed by three workshops run at weekly intervals. Twelve people with dementia were recruited via an Age UK, Lancashire ‘circle of support’ group. The aim of the workshops was to offer a playful space where participants, their carers, two support workers and the research team could engage in an enjoyable and imaginative process of co-design using a range of arts and tactile materials.

At the outset, the project aimed at following a conventional co-design approach as defined by Sanders and Stappers (2008) with three distinct design stages, namely the pre-design, design, post-design research phase (Sanders & Stappers, 2014). During the pre-design phase the research team established trust by joining, participating and observing the activities of the targeted research participant group at their weekly local meetings for a period of two months. This provided an invaluable insight into the ways different people expressed their experience of dementia and the problems and challenges the research team would face in co-designing with such a unique group in terms of capabilities and needs. The first lesson that the team learned in this pre-design phase, was to focus on ‘people’ as people rather than on dementia and to concentrate on ‘wellbeing’ instead of ‘ill-being’.

Twelve participants with dementia provided consent to take part in Ageing Playfully and were supported at the workshop sessions by two carers. The team of researchers facilitated a series of playful workshops inserted in the programme of the weekly local meetings. Co-design processes meant that researchers facilitated and encouraged the distribution of control over the process. In this spirit, the activities, themes, objectives and expected outcomes would arise from a collaborative iterative process that accounts for people living with dementia, caregivers, researchers and knowledge that emerged from the activities. The project included four workshops, each of these informing the next one. The first one was more exploratory whilst the last one focused on refining ideas that emerged in the process. As such, the co-design activity theme selection allowed for a degree of equity in research hierarchies, whether participant or researcher, but also encouraged flexibility in the methodology.

A multi-method qualitative approach was used, which included observations, audio recordings, photography and video recordings of each workshop. Carers and support workers participated in a post-workshop focus group to reflect on the workshop findings. Participant observation made it possible to include people with dementia of differing levels of verbal skill, where verbal interviewing would be difficult (Hubbard et al., 2003). The recorded observations were analysed thematically (following Graham, 2007) with the various data triangulated across recorded field notes, visual and audio data from the workshops and focus group audio recordings. Themes were identified through the process of coding, indexing and categorisation. Four key themes were identified; engagement, imagination, social interaction and the reclaiming of a sense of self.

The research team experimented with different activities during the workshops. By modelling in groups, participants could open up imaginative narratives through different materials. This was demonstrably a very engaging method of connecting with people and their ideas, allowing them to go beyond conversation into the visual image and tactile 3D model. Providing the range of modelling materials encouraged the groups to agree that one or another object would represent different things, and that it would be perfectly acceptable to change an object’s meaning in combination with other materials. Changes in scale and colour led, at times, to humorous situations and so the stories would develop and transform, inspiring participants to immerse into some intricate representations with fully developed storylines. (See Figure 8.2.)

Figure 8.2  Modelling activities encouraging people with dementia to socialise and develop rich narratives.

Participants started to recognise the space that was being created through the activities. By the final workshops, the team experienced much more relaxed participation. Spontaneous storytelling, which was triggered by the activities, was combined with personal tales. Importantly carers noticed how participants were looking forward to the workshops and family members reported positive moods in the participants after the ‘Ageing Playfully’ activities, as illustrated by the following quotes.

The original aim of the project was to co-design one or more models to inspire digital–physical technologies that foster wellbeing and motility for people living with dementia. However, the surprising aspect of the research was the realisation that, more than an artefact, the subjective wellbeing and mood of people with early signs of dementia did benefit significantly (as reported by the carers, support workers and family members of the people with dementia participating in the study) from the collaborative creative space, the ‘magic circle’, that the workshops created. The human contact, the social activity, creativity, the opportunity to be relevant and at the centre of an activity, proved to be more important for the wellbeing of the participants.

In the light of this, the project’s main outcome was a set of practical recommendations for researchers, informal carers and professional carers. Being loyal to the playful nature of the research, these recommendations are presented as a set of ‘playful’ cards that offer guidance and ideas on how to run workshops using playful activities that mediate active social interaction, stimulate engagement and contribute to knowledge. The Ageing Playfully card game provides themes and offers practical questions to consider when working in similar activities with people living with dementia, for phases of before, during and after the workshops. The card game opens up a space in which to rehearse possible scenarios, and, at the same time, by playing, the cards offer an invitation into that co-creative space is better played – experienced – than explained. The cards are thought of as a co-design kit to facilitate activities with people who are planning to engage in participatory design projects. (See Figure 8.3.)

Figure 8.3  The Ageing Playfully cards.

Benefits and challenges of co-designing and participatory approaches for wellbeing

In this section we examine the value and benefits of co-design in wellbeing. We will then discuss the challenges related to employing co-design and participatory research activities for design for wellbeing.

Recommendations

The work presented above has demonstrated that there is a need for specific course of action for tackling the challenges associated with co-designing for wellbeing and encapsulating the values of participatory design. Below we present and discuss a set of recommendations developed from the literature and the two case studies presented in this chapter.

1. 1. Adapt and personalise co-design methods when working with people with cognitive disorders

   Cognitive disorders may require that co-design techniques be modified to fit with individual abilities (Francis et al., 2009). A specific set of recommendations for co-designing interventions aimed at increasing the wellbeing of people with dementia can be found in the work of Hendriks et al. (2015) and for co-designing wellbeing-related interventions with people with autism spectrum disorders, one can refer to Francis et al. (2009).

2. 2. Reflection in co-design and on co-design to ensure researcher participant hierarchy balance

   In tackling the challenge of the relationships established between researchers and research participants (White & Pettit, 2007), it is critical that the designer acts as a consultant to enhance outcomes rather than to control the process (Francis et al., 2009). Designers’ assets of creative, visual and change-oriented thinking in co-design sessions should be focused purely as a motor of innovation or in driving ideas forward (Mattelmäki & Lehtonen, 2006) and not focused on the research agenda or specific concepts that emerge from the process. Here the facilitation role of the designer should be made clear to all co-designers right from the outset. The designer could employ Schon’s (1984) reflective practitioner approach of ‘reflection in action’ and ‘reflection on action’ both during and after each co-design activity to ensure that the co-design values have been followed. This is essential in ensuring that wellbeing is the focus of the co-design workshops that designers reflect in both during and after the workshop.

3. 3. Embed existing community-based participatory research ethical principles before the start of the co-design process

   In tackling the ethical challenges of equal representation among co-designers, researchers should embed the ethical principles and practice for community-based participatory research, which have already been established by other researchers, such as the one by Banks and Manners (2012) at the Centre for Social Justice and Community Actions at Durham University. These will help ensure that any potential ethical challenges, such as representation, accountability and social responsiveness, have been considered and that there is a consistent and credible way of addressing them in the co-design process.

4. 4. Engage all key stakeholders prior, during and after the co-design process

   Intended beneficiaries of the product, service or innovation to be co-designed should not be the only participants in the research process. Instead, participatory research may involve key officials as stakeholders within it. This is invaluable in order to help them own the findings, and hence influence knowledge and action at the levels of policy formulation and programme implementation, rather than simply relying on the research report to achieve results (White & Pettit, 2007).

5. 5. Consider whose wellbeing and how will it be integrated in the co-design process

   Exploring how considerations of wellbeing can be integrated into design is a crucial step prior to the start of the co-design activities. If we want to integrate considerations of wellbeing into co-design, then we need to specify considerations of whose wellbeing the workshops focus on (Van de Poel, 2012). Typically co-design workshops may include diverse groups. For instance a co-design workshop aimed at exploring the subjective wellbeing of people living with a chronic condition, such as dementia, may include people living with dementia, professional caregivers and family members. It is therefore important that, at the start of the participatory design process, the research team has a clear view on whether the focus is placed on the wellbeing of one specific group or all of them. In terms of how, it is important to ask: Is the focus of the research methodology to co-design products or services aimed at improving or promoting the wellbeing of people or is it more aimed at enhancing wellbeing through the social interaction benefits the co-design process affords? These are important questions that a designer would have to consider prior to starting a co-design activity.

6. 6. Employ co-design as an outcome of wellbeing in itself

   The literature as well as the case studies presented in this chapter, have demonstrated that the co-design process can be an outcome in itself. By focusing on social interaction as a key value, especially for seniors’ wellbeing (Vaajakallio et al., 2013), co-design activities can mediate active social interaction and stimulate engagement. For more detailed and practical recommendations see the set of playful cards,³ developed by the Ageing Playfully project, that offer guidance and ideas on how to run co-design workshops with wellbeing in focus and using playful activities.

Conclusion

This chapter has demonstrated that co-design and participatory research methods can actively contribute to the wellbeing of individuals and communities alike. We have presented two case studies and have discussed the challenges as well as the benefits of co-design research methods in the area of wellbeing. Moreover, this chapter has provided a number of recommendations for researchers who wish to embed co-design research methods in projects related to wellbeing. What has become clear is that creating a sense of control or perceived control forms one of the key benefits of participatory research methods that increases the wellbeing of people with chronic health conditions as well as in the workplace. In the current political climate, where increasingly more governments across the world pass more control to communities and individuals, co-design will have a significant role to play in the transformation of public services (Szebeko & Tan, 2010), and by extension in the wellbeing of individuals involved in this process and the recipients of such co-designed services. This chapter provides an insight into how one can contribute to wellbeing through co-design and participatory design research methods.

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