Genealogy is seen here as an inter-generational organising principle for wellness, happiness, and security as well as a high standard to live by. This is very different from a mainstream European or North American perspective.

Spirituality was also continually referred to and often in relation to whānau:

*I am gonna call it wairua (spiritual) because we are talking about continuity. Being part of continuity in the wairua channel from your tūpuna (ancestors), to yourself, to your own tamariki (children), rangatahi (youth) to your mokopuna (grandchildren). Passing on the guidance and those teachings from your tūpuna is so important in life.*

The spiritual "channel" from ancestors before you to children and grandchildren in the generations after you, provide the security and teaching about good living and happiness. Quality of life is seen in these terms as being a connector, or passing on the wisdom, within the spiritual channel from the ancestors to the young ones.

These understandings were not peripheral, but consistent in the meetings I facilitated. They reflected an indigenous understanding of the world and what worked best for their sense of fulfilment.

In Te Ao Māori, it is customary to conclude gatherings by singing a waiata together as an entire group and then someone is asked to say a karakia/inoi mutunga (closing prayer) on behalf of those present. Following that, it is important to ensure that those attending are fed properly, so that both the spiritual and physical needs of the people have been fully acknowledged and catered for.

The TKKMNM whānau and I sang our closing waiata and The Tumuaki (leader) of TKKMNM recited a Karakia Mutunga (closing prayer) to complete our hui properly. I had provided some kai (food) for the participants, we said an Inoi mo Te kai (prayer for the food) and ate together. As with all the other participants in each group, a koha (donation) was given to each person for their time before they left to go home.

We concluded the MWWL hui with the Chairperson asking us to stand and sing a wellknown waiata, He Honore (An Honour), together, and then she asked me if I would say a prayer for everyone, to finish off the hui, which I was more than happy to do. The participants had been asked to bring a plate of food to share. We said a blessing for the food and were able to eat and continue to kōrero during the meal. I had given a koha (donation) to the Chairperson before the hui to use within their branch as they saw fit.

Once we had completed the final aspects of the co-creation hui with the Mōrehu group, the Apotoro Rehita asked us to stand together and sing a significant closing himene (hymn) in our faith, Ma Te Marie (Be at Peace) and he closed the proceedings with an Inoi Whakamutunga (closing prayer). We had eaten lunch together before the hui, so a koha (donation) was given to the Secretary of the Church Committee at the conclusion of the hui to use for parihā activities.

#### **The importance of co-creation research**

#### *Charles*

Monnie's (we call Monica, "Monnie") description is a world away from a standard Pākehā (white European New Zealander) focus group. Although only one of the groups she refers to is a church group, all three gatherings have prayers, songs or chants, speeches of acknowledgement, and statements of genealogy. These ways of doing things are not only different in terms of actions, but they also reflect a fundamentally different view of life, expectations, and ways of interacting from European and North American mainstream cultures. These naturally lead to different experiences and understandings of social phenomena, such as wellbeing and social connection, for example.

In these gatherings and many other meetings with other groups, spirituality was central to wellbeing and genealogy was central to social connection. Neither of these features in standard wellbeing and social connection scales. Participants in the co-creation hui also spoke of the importance of living in, and relating to, the Māori world as it connected them to their ancestors and helped them flourish. Again, these were emphases that don't appear in standard social scales.

Had we not listened to the elders' early concerns about some of the questions in the loneliness scale we planned to use, and pressed on with them, we would have completed our research much earlier. However, we wouldn't have understood loneliness as older Māori experience it. This is true also of the discrimination and wellbeing questions referred to above.

The significant importance of the co-creation hui or workshops were the rich data that emerged about how older Māori experienced indicator domains like neighbourhood quality, social connection, and abuse. There were certain universal aspects of these indicators that are common to most people, but there were also Māori specific aspects that were particular to their ways of doing things and understanding the world.

If relating to the Māori world and connecting to your ancestors makes you flourish, then surely a question about that on a wellbeing scale will provide Māori specific information about quality of life. That addition may also lead to policies that help enable people to connect to that world and services that aid people who have been alienated from it through generations of colonisation. Likewise, if spirituality is central to wellbeing and genealogy is central to social connection, then some appropriate questions concerning these matters would provide improved data for wellbeing and social connection measures. In turn, policies and services could be much more precisely and relevantly prepared for older Māori.

#### *Monica*

Co-creation research is particularly important for marginalised or excluded groups. It is crucial to have those who are the recipients of social and economic policies, have a voice in the process. They are the experts of their own knowledge and their perspectives should be part of the challenge and change that inform future policy actions. If we never ask for all perspectives, things are never likely to change or make a difference in the future.

Indigenous values are based on the importance of "collective thinking". What is best for all of us as a whole rather than the individual? How can we improve what is going on so that we can all benefit from this? I have found that co-creation is a significant form of engagement for Māori that brings greater value and richness to the indigenous research experience.

I have learnt a great many things from the co-creation process. Everyone is a product of their own life experiences and their upbringing has shaped their values, beliefs, perspectives, and behaviours. I think I used to assume many things about people prior to my involvement with how co-creation worked, but I have since learnt how important it is to listen to the stories of others that are willing to share them, and to do so without making any assumptions, judgement or prejudice, and to be more open to what is divulged.

In the early stages of assuming my role, I did not initially realise how crucial the cocreation process was going to be in the development of Māori-specific scales for the research. The creation of a culturally safe and responsive environment for our Māori participants was crucial to ensure that they were fully engaged and eager to share their views and perspectives based on questions in particular areas.

Once, we had completed the co-creation hui. I then had the honour and privilege of re-watching video, re-listening to, or re-reading information from the co-creation hui for the thematic analysis process. I used a "coloured-post-it note" approach which I was quite good at (all primary teachers love fun and colour), using a different-coloured post-it for each co-creation group and large A2 sheets of paper. It allowed Catherine, Charles, and I to find common themes very quickly for the next phase. We could synthesise and analyse them easily, which in turn, contributed towards the development of relevant and robust question lines for the research study.

I felt that the co-creation mahi (the work involved) was incredibly important because the perspectives of Māori in social policy realms in Aotearoa-New Zealand had not always been gathered properly or recorded well in the past. However, I do think this is beginning to change.

#### *Charles*

The critical contribution co-creation research makes is it that it de-thrones the notion that social scientists "know best". Social scientists know a lot of useful things that can facilitate good policymaking and improved service provision, but they do not know how cultural groups with different norms and assumptions from their own, actually understand and define key social indices like wellbeing, social connection, and loneliness – to simply mention three.

In New Zealand, our Treasury (Ministry of Finance) has been leading a major piece of work on wellbeing (Treasury 2021). It takes a largely Living Standards approach, not dissimilar to the OECD Better Life Index (OECD 2020). However, Māori and Pacific scholars and policy analysts have clarified that their cultural understandings of wellbeing have spirituality and extended family relationship at their heart (Treasury 2022). The Pacific researchers at the Family Centre who led the Pacific elders' project on Loneliness and Social Isolation, were requested by the New Zealand Minister of Finance to write a paper on Pacific Perspective on Wellbeing and the same emphases were expressed (Tamasese and Parsons 2019).

The Treasury struggles to incorporate these values, as it says,

The Living Standards Framework does not seek to comprehensively incorporate everything that is important ……. from te ao Māori and Pacific perspectives. We have aimed to incorporate some of the most important concepts at a high level, but intend to use the Living Standards Framework (on wellbeing) alongside in-depth frameworks. *(Treasury 2021)*

referring to the specific cultural reports noted above. However, the report looks much more similar to the OECD Better Life Index.

The struggle is because the Treasury is a largely white, Western trained organisation that is much more comfortable in the secular, individualistic, and nuclear family world of Europe and North America than it is in the warm Polynesian waters of the South Pacific cultural milieu. The Living Standards Framework, despite its important attempts to go beyond GDP and other single measures of financial capability, has not co-created the framework with indigenous and Pacific New Zealanders. The critical parts of their models simply don't feature.

This is why co-creation methods are so important. When carried out responsibly, they involve a surrender of assumptions and norms and facilitate a process for participants to clarify their understandings and world views. It is hugely important in gender research, cultural research, ability/disability research, sexual orientation research, research with poor people, and indeed all research where the assumptions and norms of the researchers are different from those of the research group. And even where the researchers share the assumptions, the same surrender is important to hear the voices of others which often vary within groups.

During the early and middle 20th century, social scientists in a broad range of disciplines introduced important and innovative ways to understand social behaviour and learnt to measure some of it. The insights have been significant, but they have also developed hubris and blind spots of their own as the challenges from women (Gilligan 1982; Goldner 1985), cultural groups (Smith 1999), and disability organisations (Lawson 2001), to name a few, have testified. Their reality was often seen differently, described differently, and written up differently from the way they viewed it themselves.

Co-creation research at its best shows the respect due to participants that demonstrates they are the experts in the knowledge of their own communities and ways of doing things. The researchers' job is to question respectfully, probe, and listen. The analysis of results also needs to be checked back with members of those communities to mitigate any unintentional bias. This involves a longer and more thorough process than is often used, but the results when carried out well, build trust and represent people's lives authentically.

#### **Notes**

1 Much of the New Zealand Government's research funding is managed under the Innovation part of the Ministry of Business, Innovation, and Employment.

2 The criticism was not unique to this scale, it was about the assumptions behind universal scales developed in European, North American, Australia or New Zealand countries that are based on western or northern norms.

#### **References**

## CO-CREATING RESEARCH

## Co-researchers' parallel conversations from the participatory action research project 'CareComLabs'

*Shkumbin Gashi and Erich Kohler*

*We combine our two perspectives to share relevant aspects of our experiences and our work together in the participatory action research project, CareComLabs.*

#### **Carecomlabs project—a brief description**

#### *Shkumbin*

The CareComLabs project is interdisciplinary in nature, bringing together local actors and academic scholars. This project's objective is to co-design and co-create a caring community. A caring community aims to build the structures that permit and facilitate the sharing of care responsibilities among diverse actors, including family members, neighbors, and local and/or other relevant institutions, and to foster a culture of solidarity interactions among community members.

CareComLabs has three significant pillars: (a) participation, (b) research, and (c) action.

Participation: the whole team (academic researchers and local co-researchers) is involved in the co-design and co-creation/implementation of each activity that leads to the common goal of creating a caring community. The decisions about project activities are taken through the principles of shared decision-making.

Research: the needs of the community are researched/investigated. For example, in Bachhdorf, 21 interviews were conducted (by co-researchers; older adults among them) with older adults and individuals with special needs, aging in place.

Action: initiating and co-creating activities and structures that respond to the needs of the community and/or individuals involved in the project (identified during the research phase).

CareComLabs is active in multiple locations and in each of them the project has adopted a distinct identity based on local resources, involved personnel, etc. In this chapter of the book, we report on Bachhdorf, one of the locations in which the project is active.

## *Erich*

In Bachhdorf, we divided the project into three phases:

Phase 1: (a) create a team, explore, and document the actual status of the community Phase 2: (a) Investigate the needs of the community, through a community qualitative study which culminated in 21 interviews.

Our findings from this study are listed in the categories:

Phase 3/Further planning in terms of continuation of idea collection/measure development

## *Today's status*

It became very clear that even though there are different living service offerings for older adults, it's not given that they are known to each of them. With a "coffee-bike" we are presented since December 2021 on hot spots in the village, to be as close as possible to the people, to listen, to coordinate, to help.

## **How we got involved?**

## *Erich*

Living more than 40 years in Bachdorf, a village close to Zurich and Zug, I was most of the time "on the road" with customer projects throughout Switzerland as well as in the USA. After retirement, I was looking for activities in the older adult market. First at UZH3 (Senior University Zurich) I found an environment which fully supports my targets and also offered opportunities in participative working teams. This Citizen Science opportunities showed me a creative, educational way to develop my skills further.

The CareComLabs Bachhdorf was a project I could live the participatory approach and also bring in my knowledge about the village, and my vision to develop Bachhdorf toward an age-friendly village.

## *Shkumbin*

After I had completed my master's studies in psychology in my country of origin, Kosovo, one of my goals in Switzerland, where I have immigrated for five years now, was to continue my academic development by pursuing doctoral studies. After conducting sufficient research into my options, I applied as a doctoral student to the CareComLabs project in Switzerland. My position in the project was funded by the Swiss National Scientific Foundation with the idea that I would divide my time during the project between the work I do in the project and my doctoral studies, combining at the same time the synergies of both and creating a symbiotic relationship between project work and doctoral studies. Being new in Switzerland, and knowing the context and the local language very little, the beginning of the project (the first meetings) was one of the times when I was most challenged to go outside my comfort zone. My elementary knowledge of the German language has been an initial obstacle, but over time, through the solitary nature of the team, helping me with the language as well as having an empathic understanding of my situation, I have benefited a lot, and this has been one of the unplanned effects of a "caring community," where I have seen how naturally people can benefit from such structures.

The concept of co-creation was to some extent "foreign" to me, because of my previous experience. My exposure to science has been more quantitative in nature, even though I have worked with qualitative methods (grounded theory) before. Therefore, at first, it required a lot of analysis and adaptation on my part, to understand well the principles of co-creation. But once I understood the basics, the idea of co-creation immediately stuck with me, because I quickly realized its power to get to the core of the problem. In traditional forms of research, groups of interest when the research is conducted are seen only as subjects, while in participatory action research, subjects are also part of solution finding actions. This particular approach enabled through co-creation has fascinated me from the beginning, and I continue to follow it with "open eyes, ears and mind" and learn from it as a process.

#### **The co-creation potentials and pitfalls: lessons learned from CareComLabs**

#### *Shkumbin*

From my experience and lessons learned in CareComLabs, I think that if done properly, cocreation is not only recommended but necessary, especially in community interventions. At a time when communities are becoming more and more diverse, structures are needed that bring all (or as many) perspectives to one table to create solutions that suit everyone. From what I have observed, co-creation has the power to build structures that last longer and are more useful to the community than when change comes from outside.

Another important aspect, or lesson learned on the co-creation, is the process of expectations management. In CareComLabs, we have seen that managing the expectations of all parties involved in such projects is the biggest/main challenge. It is true that the team has a common goal, but this does not prevent individuals and other interest groups from having other goals, more related to their self-interest or the institution that they represent, which is not wrong, but it should be acknowledged. Therefore, I think that the first step that should be taken in such projects is to understand the expectations of everyone from the beginning, and then during the various phases of the project to try to discuss and meet those expectations. Have they been met? What have been the obstacles, etc.? If this is not addressed, I think each project will have "stones in shoes" that hurt the "walk." Conflicts can arise from members frustrated with not managing expectations.

#### *Erich*

Co-creation has several strengths, but one of its main advantages is that it allows for the integration of multiple perspectives and resources, which results in a more sophisticated method of approaching a problem. The co-creation process in PAR combines two perspectives that are complementary to one another. Researchers from academic institutions contribute to the project with their expertise in scientific methodologies, while co-researchers provide their familiarity with the environment, culture, and resources that are found locally. In addition, co-creation bolsters the emancipation of community members, the pursuit of learning throughout one's life, and the dissemination of scientific information.

The combination of lay and academic knowledge is definitely a strength of co-creation, but for this to happen, a challenge should be mastered. And that is that both academic researchers and local team members accept what the other party brings to the project. This means academic researchers accept the lay knowledge, information, and ideas provided by non-academics and local team members accepting the academic world, pace, resources, use of particular methods, etc.

#### **The co-creation CareComLabs: our personal reflexions**

#### *Erich*

It was a very positive experience for me to be a member of a team like that, which brought together local residents and academics to collaborate on finding answers to issues concerning Bachhdorf. Since the very beginning, the project has been conducted with an attitude in which all of us have operated as members of a team that reviews, discusses, and makes choices in a democratic manner regarding the activities and the project itself. In my opinion, this is a project that showcases the highest levels of collaboration and engagement possible.

Due to the fact that I have a strong interest in the scientific world, being a part of the CareComLabs project has provided me with the chance to expand my knowledge of the scientific world, the spirit and paradigms of participatory action research, and the working relationship between scientists and local actors to effect change. I have gained knowledge not only about the thinking patterns that are used in scientific and academic contexts but also about the use of various programs that make it easier for team members to communicate with one another, such as Miro Board.

At the end of the day, it is a project in which you can contribute to the community but at the same time learn a lot, and that would be how I would describe my experience on the project: learning by contributing.

#### *Shkumbin*

I would describe my time at CareComLabs as both demanding and rewarding, as evidenced by the experiences listed below.

In such projects, one learns a lot all the time. For me as a new resident of Switzerland, for example (for five years in Switzerland), engaging in direct contact with different stakeholders has helped me immensely to understand the socio-cultural context and cultural patterns in Switzerland—as a result, it helped my integration in Switzerland.

#### *Shkumbin Gashi and Erich Kohler*

One change I have noticed in myself because of CareComLabs is, for example, my desire to work in multidisciplinary teams. Through CareComLabs, I have gained knowledge that enables me to work in teams, build synergies, and use resources around me pragmatically. Another change I would mention has to do with my perception of old age. My grandparents died early, so I did not get to know them. I didn't have a "grandpa or ma" figure in my life. As a result, I had prejudices about old age as a gloomy period, but from contacts with members of CareComLabs (older adults), I changed the perception of old age from gloomy to one where dreams are built, where man has and finds space to develop, to contribute to the community, etc.

I also think that I have gained a better perspective on doing science for the common good. "Making a difference" has always been a motivator for me—a strong reason to wake up in the morning. That is why I do science — to change the lives of other people. However, sometimes I had the impression that my science served me and my scientific advancement, but I did not influence others. But through the co-creation process at CareComLabs, I have gained another impression of my scientific work, one that is more than the statistics or scientific papers in impact factor journals. Through co-creation in CareComLabs, I managed to co-build structures that will potentially stay in the community, and that is what I consider to be the main purpose of doing science.

Still, the work was sometimes stressful. This is due to the fact that, methodically, through participatory action research, there is not much room to do proper planning, two to three months in advance, for example. A lot happens ad-hoc, and often decisions about what to do next vary from one meeting to the next. Therefore, my role as a researcher is sometimes reactive, which requires quick decisions and negotiations with parts of my private life.

#### **Two stories that exemplify co-creation in CareComLabs**

#### *Shkumbin*

We planned a gathering in the neighborhood and invited several people to inform them about the CareComLabs and to invite them to become involved in our project, to join in our caring community initiative. We (all team members) organized the event down to the smallest detail, and we made sure that everything was done "correctly." The response we got from participants was not what we anticipated, and the level of enthusiasm that we imagined would be there in the room was not there. This came as a surprise to us.

Following the conclusion of the event, we regrouped in order to have a conversation regarding what had just taken place. In spite of the fact that there was dissatisfaction felt by all, it did not take very long, and after approximately forty-five minutes of discussion, the group's sense of unity did not diminish; rather, individuals saw the positive aspects of the occurrence, and the community felt a sense of collective pride as a result. As a direct consequence of this development, throughout the subsequent weeks, the group demonstrated an even stronger commitment to cultivating communication bridges with other organizations.

I believe that this is the value of co-creation because it creates a group with an identity, a group in which members invest a lot, and a group in which members are able to go "the extra mile" for the sake of the group and push the work forward with all of their potentials. The process of co-creation "melts" individuals into a group.

#### *Erich*

Prior to the first wave of the coronavirus pandemic, we had already established a work routine as well as short- and medium-term research objectives, and we were prepared to begin conducting interviews for the study. COVID-19 posed an unanticipated obstacle to our plans.

As the number of COVID-19 infections increased and the initial lockdown was implemented, we had a three to four week respite. However, it was short-lived, and we resolved not to give up and simply wait, but to keep the project alive. The first course of action was to resume our biweekly meetings. As a result, we determined that the most effective way to host such gatherings would be through online platforms, and we enlisted the aid of researchers to use platforms (i.e., Zoom) that would make this possible. We found a way to keep the project alive and to continue communication and coordination among ourselves, and I see this adaptation in an unusual circumstance as a sign of our determination to advance the caring community and a positive indicator that the initiative will be sustainable.

Due to the pandemic context, numerous plans and adjustments were made. Despite this, we were able to keep the project alive.

## DOING RESEARCH TOGETHER – INSIGHTS FROM THE INTERGENERATIONAL PROJECT "DIGIGEN" IN GERMANY

*Anna Wanka, Miranda Leontowitsch, Friedrich Wolf and Horst Schöberl*

This chapter sets out to give voice to the people – both academic and experts by experience – that was part of the research project "DigiGen – Two Generations One Digital Age"1 based at Goethe University in Frankfurt/Main, Germany. The three-year project was funded by the German BHF-BANK Foundation and started in 2020. It aimed to facilitate a dialogue between two age groups – high school aged students and retired adults – who jointly created knowledge about artificial intelligence and co-created means to disseminate this knowledge through a podcast series.

For the purpose of this chapter, two interviews were conducted in 2022 – one with the two principal investigators of the project, Miranda Leontowitsch (ML) and Friedrich Wolf (FW), and one with Horst Schöberl (HS), one of the retired project participants and coresearcher. Both interviews were guided by the same interview guide, comprising questions around involvement with the project, experiences with the participatory design, and lessons learned. Both interviews were conducted via Zoom and lasted for about one hour. In this chapter, the answers of all three interview partners are presented together to allow readers to capture different perspectives.

### **Question 1: How did you get involved with the DigiGen project and what is the project's participatory approach?**

The two academic researchers and principal investigators of this project answered this question first and foremost with their research interests. As ML put it: "*When Friedrich outlined the idea to me the first time, I knew we needed to do this!*" And, FW adds, "*And then the next step was simply to try it out!".* Horst Schöberl, a non-academic researcher in the project, came to it quite differently – namely through a flyer distributed via the University of the Third Age that he studies at.

*I'm at the University of the Third Age in Frankfurt, and they always send out a letter when some researchers are looking for test subjects, and then there was this reference*  *Insights from the intergenerational project "DigiGen"*

*to the Citizens' University and this project on artificial intelligence or generations shaping digital technology together. That caught my attention...I am interested in artificial intelligence and then I signed up, then there was an interview and then I was selected. That's how I came to the topic. […] And, I think, you don't get any more stupid, and so I said, maybe you'll learn something new.*

*(HS)*

Both academic principal investigators framed the participatory approach of the project as essentially democratic, "*that people of all ages should have the opportunity to learn how digital technologies e.g. artificial intelligence work because many of these technologies affect them in their everyday lives*" and that their voices are heard in the discourses around digitalization. Friedrich found the idea appealing to design a participatory project that would both create knowledge and societal benefit. As researchers at a department for Educational Sciences, Miranda added that participation also aligns with democratic concepts of learning and education, particularly reflexive learning: "[…] *so instead of saying that you somehow prescribe a curriculum, you take as a starting point this interest that is there already*". In this learning process, people want to learn more about something that is relevant to them, not by being taught but by working it out themselves.

*And I find this reflexive form of learning, which is also something I implement a lot in my own teaching, of great value in a participatory project. When Friedrich pitched the project idea to me for the first time, I immediately thought it could be set up as a participatory, intergenerational learning project.*

 *(ML)*

However, while the project clearly featured participatory elements, both principal investigators framed it as "*not quite a classic participatory research project*" (ML), that is, participants were invited to discuss and learn about a predetermined topic (artificial intelligence), but had a lot of freedom in how to work on it. So questions regarding the level or degree of participation in participatory research designs remained, such as

*[…] when is it genuine participation that really comes out of people's interests? […] How much help do I have to give, and when do I let go so that I really get development, and not just (something) that others have already given/said? I actually find that an interesting thought and, yes, I don't have any answers as to whether that is good or bad.*

*(ML)*

Working out how much freedom to give was particularly relevant when working on topics that are controversially debated in the public discourse, such as digitalization and artificial intelligence. For the PIs it is important to try to get everyone to the same level – through the provision of knowledge – before more interactive work can be fruitful.

PIs also found that their project idea provided an opportunity to further develop research on intergenerational learning. In their experience, most intergenerational projects involve older adults and small children (up to the age of 11 years) in projects around emotional bonding (e.g. by meeting up regularly for board game afternoons) The aim of those projects most often is to decrease loneliness in later life. Other intergenerational research

## *Anna Wanka et al.*

that involves older adults and teenagers, often assumes asymmetrical and stereotypical approaches to intergenerational learning, providing little to no space for self-directed, joint learning about a topic that is new to both age groups:

*So it's not a particularly reflexive learning process, it's more like this: we have the digital natives and they teach the non-digitised older people and try to compensate for their deficits and that's where we're trying to move away from actually […] Yes, it is possible that the younger ones are somehow even more digitised, but we simply look at how they negotiate this together.*

*(ML)*

Horst Schöberl agrees that digital skills is a topic that concerns older and younger people equally:

*Everyone has to deal with it, because otherwise they simply can't exist in today's world, or, or can't participate. So, the younger ones, if they don't have these smartphones and are not in any social groups, they are outsiders, right? So they have no chance at all of surviving, right. But I will put it this way, and with the older ones it is amazingly the same!*

Time was another asset of DigiGen compared to existing projects on intergenerational learning as the participants had a whole school year to get to know each other, learn about artificial intelligence, and discuss how they wanted to live in a digitalized world. Other projects on digital skills with high school students and older adults run on a fraction of time:

*That was one of the points where I thought, that's great and no one has ever done that before, to take so much time. In other projects they are together for a week or a few days over two weeks, and then one of the recurring results is that it should have been longer, participants had just got going.*

 *(ML)*

## **Question 2: Which positive and negative experiences have you made in the course of the project?**

## *Challenges in communication: irritations and intergenerational relations*

All persons interviewed agreed that there was a positive dynamic to the group from the start, and the principal investigators made sure to invest a lot of time in getting to know each other and building up relationships:

*Well, I think what worked well was that we now have a group that is very well connected with each other. We took a lot of time for that at the beginning […] Now you have a very harmonious group, as far as the common attitude, the common work is concerned. That has worked well at this level.*

*(ML)*

Getting to know each other, and working through the respective age-based stereotypes, took some time, as Horst Schöberl remembers:

*Insights from the intergenerational project "DigiGen"*

*The first two times you have to, you know get to know each other a bit […] until the younger classmates have […] also granted us the role of classmates, in that we as older ones have then also regarded the younger ones not just as grandchildren or almost grandchildren, but also as classmates, and after that it actually went well.*

*(HS)*

Whereas the interviewees emphasized the value of harmony in attitudes towards shared work and heterogeneity in terms of age, generation, and experiences, both academic and non-academic researchers also sometimes struggled with this. Horst Schöberl explained that he enjoyed the project, but perceived one shortcoming, and that was related to the communication across age groups:

*Everyone was talking about artificial intelligence as they understand it and the result was, it was a huge mess […] That was about the only thing that I perceived as a shortcoming in the project. That we didn't ensure a clear terminology right from the start, so that later on we kept running into this problem: one person sees it this way, another understands it that way, and the third has something completely different about it.*

*(HS)*

What he was interested in did not always and necessarily resonate with the others in the group. At times he felt misunderstood. However, he adds that this irritation also contributed to his learning processes:

*What I found extremely positive was […] the desire to solve this confusion and to find out for myself what it is all about. So that was an extremely positive aspect of this project, that it stimulated thinking, that it also, if you, as, I wanted to know exactly, then also forced you to act, to deal with it and to question your own position again.*

 *(HS)*

The differences between students and older adults did not only concern their knowledge and experiences but also their level of commitment. As much as the school students had been given a choice in what extra subject they could take that year, DigiGen remained a school subject that had to be attended, whereas the older adults came to the project as a result of their intrinsic motivation.

## *Challenges in the project design and implementation: selection biases and ageism*

As in many participatory projects in ageing research, the principal investigators were faced with the challenge of recruiting and motivating a diverse group of people to get involved in the project. As FW put it:

*[...] what I think we have to critically reflect is that we yet again have those people with an affinity for education. Not all of them are educated to a high level, but they are very interested in further education and this poses the question: The participatory idea is nice, but if we can only cultivate it with people who are willing to do it and are*

#### *Anna Wanka et al.*

*also used to getting involved in a certain way, […] is it then perhaps something that only works for this group?*

 *(FW)*

The groups that would "*benefit greatly from having their voices heard*" (FW) are also hardest to reach – a common problem among the research community, as ML also notes:

*This remains a big problem. And you hear it a lot . Even in projects where a lot has been invested to somehow get marginalised groups involved, it just doesn't work out so well.*

*(ML)*

Recruitment and retention also proved to be one of the major differences between the age groups involved: While students were recruited through their school and showed no dropouts throughout the whole project duration, older adults were recruited through a more selective pathway, namely via several large, local non-profit organizations providing services for older adults. The mailing lists via which the call was advertised, however, only reached a relatively well connected, active population of older adults (who at least used email). Indeed the call initiated a huge interest and was condensed in a second step when potential participants learned about the requirements for participation: weekly meetings from 9.50 to 11.25 on Mondays for the duration of a school year. In addition, potential participants were asked to submit short answers to four questions: "What interests you about artificial intelligence?", "Which digital devices (e.g. smartphone, voice assistant, PC) do you use and what for?" "What was school like for you?", and "Why would you like to work with high school students?" A group of interested participants were invited to a meeting in which they met the research team and could ask questions. Due to the pandemic, this meeting was held via Zoom. Although this created a selection bias for one of the participants who could not use Zoom it worked for the rest. The person who did not join the Zoom meeting did, however, become one of the older co-researchers.

Beyond recruitment, dropouts proved to be a challenge in the process of the project:

*I think dropout is a real issue. It may be due to the pandemic, but I think that's basically a challenge in participatory research, and of course we don't have such a dropout on the student side.*

 *(ML)*

Reasons for dropouts included, for example, care obligations, wanting to be careful due to the COVID-19 pandemic, or also feeling overburdened by the learning contents and requirements of the project. One participant, for example, "*wants to do it properly, she wants to be able to read the texts, to be able to prepare herself, and it has all become too much for her now*" (ML). This left her feeling overwhelmed: "*It's simply a complex subject, right? And that's where you lose people*." (ML) Dealing with a complex topic that includes mathematical language can increase dropouts, particularly among those with low formal educational attainment and/or who have not been in touch with educational organizations for a long time. The struggle to "keep up" with others who have been involved in educational programmes throughout their lives increases this risk.

*I think these are precisely the people who have low self-esteem […] they have this feeling that they could catch up on something, but they are also particularly sensitive to feelings such as, 'Oh, I can't keep up. […] I haven't got what it takes.' That is something that is carried along biographically over a long time: as a child, as a young person, someone told you, 'You are not good enough for a higher school education', and somehow you can't completely get rid of that. And that becomes apparent here in this project, too.*

 *(ML)*

When Horst Schöberl talked to his former work colleagues about his involvement in research projects, he found them interested, but also sceptical. They would ask: "What are you doing there again? Don't you have anything else to do?" What he found to be more of a barrier to participation, however, was not primarily rooted on the side of potential participants, but in (scientific) ageism. He had the impression that the academic system itself disregards later life when it comes to participatory and non-participatory research.

*Why bother about older people? They have actually retired from working life. They are only there to bring money to the people, now and then, or to take care of grandchildren, or to do something else, but that they can still achieve something and maybe even want to achieve something, that is not recognized. [...] People simply say: […] Spend your money, be peaceful and make sure that you don't hang around here for too long, so that your pension does not burden us any further. [...] And that's also / my impression is actually that those who are retired are de facto discarded by society. (HS)*

He spoke of "attributed competence" that is withdrawn at the moment that people retire, which makes retired adults also not an interesting group for research. Even though he saw a change in these attitudes, he concluded:

*I won't live to see it. Maybe that will be the generation after me, or even later, when people say: No! We can no longer afford this age-related phasing out of know-how. (HS)*

## **Question 3: What are your lessons learned from the project?**

Both principal investigators agreed that resources are key – particularly in terms of time (both duration and work hours). They also emphasized that they were lucky to have a student assistant that has worked on the project throughout

*I think you can scale such a project by investing more time and the more time and involvement you have in it, the more you can develop it.*

 *(FW)*

## *Anna Wanka et al.*

Communication between researchers and participants was particularly time-intense, and also required a high level of social skills:

*So she [the student assistant] is good with the high school students because she is only slightly older than them, and she is incredibly good with the older ones because she is an incredibly warm, genuinely warm person and they all adore her and she got presents at Christmas and we didn't.*

 *(ML)*

The desire for communication was not as pronounced among high school students as it was among older adults. Despite the weekly meetings, the older participants also communicated with the students' researcher, the PIs, and each other via email. During the course of the year, messenger groups were set up in small working groups with younger and older adults, however, the older adults lamented the slow response of younger participants. Time and communication were also of the essence in the first phase, in which participants got to know each other. In DigiGen, this process took four to five weeks.

*We allowed ourselves so much time to get to know each other that the teacher eventually came to us and said, 'The students should start doing something in terms of content', because they are starting to get restless. But in the end it paid off. If you do have this long time horizon, then really spend time getting to know each other somehow. (FW)*

This time investment in communication and getting to know each other should not merely involve participants and researchers, but should extend to the institution and stakeholders involved (i.e. in this project, the school and teachers). Beyond these lessons learned, nonacademic researcher Horst Schöbel summarized, that learning in participatory research is an open-ended process of becoming: *"I'm still in the process of learning!"*

## **Note**

1 DigiGen – Two Generations One Digital Age: tinygu.de/digigen.

## CO-CREATING RESEARCH

## Co-researchers' parallel conversations from the project 'SEVEN – Socially Excluded Older Adults: Voices and Experiences'

*Charlotte Gruber and Katrin Lehner*

This chapter is written on the backdrop of *'SEVEN – Socially Excluded Older Adults: Voices and Experiences'*, a project with an emphasis on co-creation focusing on the exclusion from social relations in old age. The following pages give insights into the research process, encountered obstacles, and learnings from both a citizen scientists' perspective, as well as from the perspective of an academic researcher.

#### **The project: SEVEN – Socially Excluded Older Adults: Voices and Experiences**

#### *Katrin*

The 'SEVEN' project, realised from 2021 to 2023, explores gendered experiences of the under-researched group of socially excluded older adults (SEOA) aged 65 and older by actively involving them in the research process from beginning to end as citizen scientists.1 By doing so, the focus of the research, the data collection, and analysis, as well as the presentation of the outcomes is guided by older adults themselves. The approach therefore allows to explicitly capture the diverse voices and experiences of SEOA, reflecting the citizen scientists' diverse life trajectories and the multifaceted effects on their social relations in later life.

SEVEN is the follow-up study of 'GENPATH – A life course perspective on the Gendered Pathways of exclusion from social relations in later life, and its consequences for health and wellbeing' (2020–2022), which investigated older adults' gender-specific differences in social exclusion and compared them across seven European countries – Austria, Sweden, Ireland, the Czech Republic, Israel, Norway, and Spain. Although some of SEVEN's citizen scientists were recruited from GENPATH, most were approached via stakeholders from social organisations.

After two introduction meetings, citizen scientists were introduced to the general objectives of qualitative research. By doing so they acquired the basics of problem-centred interviews, group discussions, photovoice, and autoethnography in the course of several three-hour long workshops. During those workshops inputs were given by the experts by training2 and the citizen scientists were able to practise the methods in small exercises.

#### *Charlotte Gruber and Katrin Lehner*

Later on, citizen scientists chose their area of interest within the context of exclusion from social relations in older age, formulated their own research question, and selected an appropriate method. During the following phase of data collection, the experts by training stayed in contact with the citizen scientists by holding bi-weekly online meetings or via phone calls. Thereby emerging challenges could be discussed and advice could be given when needed. When data collection was completed and interviews were transcribed, two more meetings on data analysis were held. In the course of the meetings participants learned to analyse the data themselves. In parallel, the experts by training interpreted the material as well, so that in the following workshop the findings of participants were implemented into the academic researcher's findings and discussed in detail. Further, key findings were decided upon collaboratively so that the preparation for the final presentation to stakeholders could be realised. Two consultative forums, one at the very beginning and one at the end of the project, were conducted and stakeholders, as well as all citizen scientists, were invited. The first forum was held to present the aims of SEVEN to both groups, about a year later the findings were presented by the co-researchers to the stakeholders. For future reports and publications, the involvement of co-researchers is planned likewise.

### *Charlotte*

With project SEVEN, opinions and attitudes of older people should be explored using a participatory approach, i.e., amateur researchers tried to use their everyday environment and their acquaintances to find out what their peers think about ageing and the challenges they face. During this process, they are accompanied by a professional team of researchers who introduce them to different methods of data collection, coding, and analysing the findings from the interviews and other data collections conducted by older people.

#### **How we got involved**

#### *Charlotte*

The initiating factor to get in contact with the Department of Sociology at the University of Vienna was that I started the newly created master's programme 'Studium Generale', especially addressing retired people. When the Department of Sociology initiated the project GENPATH all participants of this study were contacted and invited to take part in the project. The target group of GENPATH was older people; therefore, the participants of the Studium Generale were the ideal addressees. I decided to participate in this project, and I was interviewed. At that time, I already planned to write a master thesis in sociology – so working together with this department aroused my interest.

Project SEVEN is to some extent a follow-up of GENPATH and since my contact was already known I was again asked to participate. The project start was still during the time of the lockdowns and restricted regulations for meeting in presence caused by the COVID-19 pandemic – so the first meetings were online.

From the very beginning, the topic was interesting for me. It opened a possibility to question my own situation and learn about thoughts, opinions, and attitudes of others about ageing. I immediately thought of a very good friend of mine who is leading a group of older people in a rural area of Austria and invited her to join me.

When the COVID-19 restrictions were eased and meetings in presence were again possible – although while wearing a face mask – a small group of four amateur researchers or co-creators met with the involved experts at the Department of Sociology. In the first meeting, I was the only woman, but one of the men left the group and then another woman took his place. In the beginning, I felt somehow like a stranger in the group, because my life reality was very different from the others. Then I began to see this situation as an opportunity to gain an insight into living conditions that are quite different from mine.

#### *Katrin*

Like Charlotte, my involvement in the project started with GENPATH. I was part of the research team at the University of Vienna and as the project almost came to an end, SEVEN got funded. About nine months later – postponed due to the COVID-19 pandemic – we started to work on SEVEN. Generally, SEVEN can be seen as a complementary extension of GENPATH, as it also focusses on SEOA. Through the citizen science approach, SEVEN allows us to exceed some limitations we faced in the more 'classical' research design we approached in GENPATH, due to the active involvement of older adults in the data collection and interpretation. The project itself, as well as my position within it, are granted and financed by the Austrian Science Fund (FWF).

#### **Positive and negative experiences of co-creation**

#### *Charlotte*

The positive experiences clearly outweigh the negative ones.

The only negative impression for me was that the group of co-creators was so small, and I had the feeling that I do not have much in common with the others. I had hoped for an exchange of ideas with others that have a similar background, like fellow students of the Studium Generale. Until now I still feel somehow superior to the other participants in the project SEVEN as co-creators. I have almost always worked in a context with people less educated than me and/or coming from a very different background, but it makes a difference when you are the boss, the project leader, the project manager. In the project SEVEN there is no hierarchy among the participants, and I had to learn to adapt to the project conditions.

These feelings reflect my attitude towards the people of the village where I live. It is a very small village with less than 500 people; I was not born here but came here more than 30 years ago because, on the outskirts of the village, we found an old house on sale that suited my husband's and my expectations. At that time, I was almost 40 years old and had travelled and worked outside of Europe, and had just become mother of a son. I love the place, the house, and the surrounding property, but until today I do not have friends in the village. I feel there are not many similarities with the people living here – but participating in project SEVEN makes me thoughtful that maybe I should change my attitude of looking at them somehow with arrogance and superiority. Being part of the group of co-creators and making the interviews offered me an opportunity to get a closer look at other life realities and they won my respect. This has strengthened the feeling that I am really privileged, and I have no reason to feel superior. Each life story is unique and shouldn't be compared to others.

#### *Charlotte Gruber and Katrin Lehner*

The positive experiences are that becoming involved in other people's life realities made me think more thoroughly about my own life and has inspired me to write an autoethnography about the fact of being 70 years old but not feeling like 70 at all – in addition to the interviews and group discussions I conducted within the frame of SEVEN.

Conducting the interviews together with my friend has greatly increased my respect for her engagement of leading a local group of older people and to see how much her activities are appreciated. Without her initiative many of these people would be lonesome and would not have a possibility to meet others and make one-day trips to see interesting places and have fun together during the bus rides she organises regularly and at the meals together in a restaurant. It made me understand that the role of an animator is really important for older people living in rural surroundings.

I consider co-creation a very useful instrument for involving the addressees of a study; in particular, when voices and experiences of older people should be investigated. In the case of SEVEN most academic researchers cannot draw on their own experiences, so they have to rely on the statements of the co-creators. A major challenge is definitely the choice of co-creators and convincing them to participate.

Reflecting on the co-creation process of SEVEN, I come to the conclusion that I acted as a kind of mediator between the university and older people in a rural area of Austria via my friend. I think my friend would not have been contacted by the university without my intermediary role. In fact, it was a double co-creation process – but without contacts and mediators, co-creation processes cannot get started.

The main challenge for me was to define my own role: I belong to the target group of older adults but in the beginning, my main interest was on experiences and voices of other people – that was why I involved my friend to get access to the 'real' target group – but then I realised that the topic of ageing affects also me, albeit in a different way, and I decided to write an autoethnography. By writing down my own thoughts I got much more involved with my own self and could also better understand and classify the arguments of the people interviewed.

#### *Katrin*

The first thing I want to mention regarding the positive aspects of the project is the close collaboration between citizen scientists and the experts by training that seemed to have promoted a sense of fellowship. As the phase of joint preparation, data collection, and analysis took several months, all people involved got to know each other increasingly. SEVEN involved regular meetings and an ongoing contact, which had an effect on the level of acquaintance and the trust for each other. In the workshops, the conversations during coffee breaks seemed to go beyond small talk soon and this also reflected onto the co-researcher's projects, as they shared very personal stories in autoethnographies and while discussing results. Further, witnessing the development of the citizen scientists' research projects was an interesting experience for me personally. The citizen scientists' self-chosen research questions displayed their own personal situations, the various experiences they made, and their differing realities of life. Some of the co-researchers really committed themselves to their questions and exhibited great dedication in data collection and while discussing findings in the workshops. Charlotte, for example, conducted several interviews, a group discussion, and even an autoethnography, all aiming at her research question of social relations and place in older age. Her research topic also reflected her reality of life as a person who moved to the country site and does not feel integrated into the local community.

Regarding challenging aspects it has to be mentioned, that the participatory approach of SEVEN required a lot of versatility in planning, as on the one hand we had to structure the process to realise the project objectives, but on the other hand flexibility was required to allow space for co-creation. Also, for SEVEN the group of co-researchers was not set from the beginning. For example, one participant dropped out as his expectations of the project were not met. He was disappointed with the diverging individuals involved and did not see himself contributing productively. However, well into the project a collaboration with a national social organisation emerged, which left us with two groups of citizen scientists in completely different stages of the research process. This also required momentary adjustments in our planning, such as organising additional workshops and timing the research steps of the two groups' collateral to eventually merge them into one.

Another challenging aspect that has to be pointed out is group dynamics. In the workshops and meetings for both groups of citizen scientists, tensions within each group got apparent at some point. This of course comes naturally with every constellation of people, however it required strategic planning of exercises and discussions sometimes. This also made clear, that as academic researchers, compared to qualified mediators, we are not trained to facilitate arising potential of conflicts. However, looking back at the main phase of workshops and joint meetings, it worked out fine and I am confident to say that although this aspect definitely is necessary to consider, it is nothing that should abstain researchers from participatory approaches.

#### **The relevance of co-creation in ageing research**

#### *Katrin*

Generally, I find co-creation to be a beneficial undertaking. In the field of ageing research especially, it allows us to capture the personal experiences and diverse life situations in older age in an engaging and multifaceted way. In the specific case of SEVEN, co-creation contextualises existing and non-existing social relations of older adults differently than other approaches would have. First of all, this is because the focus of sub-projects was defined by the older adults themselves. This has resulted in a broader spectrum of overall themes and allowed deepened insights into their reality of life. Also, acknowledging older adults as experts of experience takes their needs and ambitions seriously and values their knowledge at the same time. Moreover, since the research process went on for several months, the experts by experience were able to gain competences in research methods, witnessed the development of their own projects, the projects of others, and the overall development of SEVEN – this fuelled a sense of collectiveness among both experts by experience and by training through the shared experiences. Also, contrary to the putative consensus within the scientific community, that only interviews conducted and data collected by trained experts is good data, in SEVEN we perceived the data collected by the citizen scientists as valuable and insightful, as the citizen scientists were able to approach their peers in a different manner than (young) academic researchers could.

Finally, from a gerontological perspective, the several research projects enabled a competence-oriented view upon social relations in older age, as differing types of social relations and their benefits, as well as emotions that are associated with those relations, became apparent, further social practices that are used to facilitate an increase of social exchange in everyday life became apparent. All of this enabled a reflected view on the topic of research throughout the entire research process.

### *Charlotte*

I think co-creation is a very down-to-earth method of exploring people's thinking and attitudes, in particular when the research subject is voices and experiences of older adults. The researchers implementing the study cannot draw on their own experiences, since they usually are still young – so they rely on questioning the target group. And I think it makes a difference for data gathered when, for example, the interviewer is a familiar person of the same age and an amateur researcher than when a professional researcher conducts an interview.

But to get scientifically useful results it is necessary to make the co-researchers familiar with techniques of interviewing, and give them guidance and training. This introduction to research methods is crucial and the time spent in our meetings at the Department of Sociology was very valuable – the knowledge gained there was very helpful, and the online availability of the professional researchers was useful for giving feedback and making suggestions for improvement.

Co-creation does not end with providing information, but we were also involved in analysing and interpreting the gained information and drawing conclusions. In the end, there will be recommendations for stakeholders and policymakers on how older adults' concerns could be heard better. Being established together with the group of those affected the results should be more credible and authentic.

#### **A personal reflection during and after co-creation**

#### *Katrin*

My participation in a project with an emphasis on co-creation was an instructive experience for me as an academic researcher. Not only did I gain a broader perspective on social exclusion in older age, it also enhanced my knowledge and abilities of conducting workshops, overcoming obstacles along the way, and be delighted by the advantages of the collaborative work of co-creation. Beyond that, I personally enjoyed regular exchange with participants and to get acquainted with them in a way that exceeds the 'classic' interview situation. Thus, the often overlooked approach of participatory research, which rightfully draws the interest of a broad research community, convinced me too and I see myself implementing my knowledge from SEVEN on future co-creation projects.

#### *Charlotte*

I have already described my thoughts about other people's life realities that changed during the co-creation process. Participating in the project SEVEN as co-creator has made me more sensitive to the concerns of older adults. I am thankful to my friend that she offered me an opportunity to get an insight into her activities as a leader of a group of older people. My attitude towards such associations has changed; I was somehow looking down on such activities by thinking I do not need others to design and plan events for me – I have so many ideas what I want to do – but I began to better understand that I am privileged. Most people in my surroundings did not have the same chances I had.

One main aspect of the co-creation process was that I realised that many older people in this rural area where I live have little access to internet technologies. They themselves consider this a dividing and excluding factor from important daily necessities like carrying out bank transactions and deal with local or regional authorities. Many small bank branches in rural areas have closed, only cash dispenser machines are remaining, administrative procedures should be done online, buying train tickets from a machine – all these activities overwhelm many older people. They begin to feel helpless, and their concerns are neglected.

My friend has organised training free of charge for handling a smartphone – but not everybody even owns a smartphone. Our society is changing into an online society, and I see a great danger in excluding the older generation from taking part in many important everyday activities. This fear was clearly expressed by the participants in the group interview.

I was a little surprised by one observation during the interviews: from the ten people we interviewed there was only one man. Although we made the group interview during and after a meeting in a pub for playing cards – and there were also men present – only women took part in the interview. My friend tried to invite also men for the group discussion, but they all found excuses for not taking part. It is a singular observation, but for me, it is significant that women are more interested in their own situation and give more thoughts on their future; and women are more willing to share their thoughts with others.

Discussing the low participation of men with my friend she confirmed my impression. She noticed a great difference between men and women. Women are more engaged in the group; they are more reliable, and they can deal better with being alone. Older men with a rural background are still strongly rooted in old traditions. If they are widowed their strongest argument to join the group is to find a new partner; many of them feel helpless without a wife because until the death of their wives, they never had to worry about organising a household. Widowed women on the contrary are not looking for a new husband to live with – they very often enjoy a new freedom – they may be looking for a partner for doing things together from time to time, but do not want to live in a common household and taking care for a man.

Participating in project SEVEN made me deal with the wide field of the topic of ageing and then realising my personal concern. The professional researchers also encouraged me by appreciating my contributions and gave me a feeling of providing them with useful information. I was very pleased when I was invited to participate in the international conference 'Ageing in Europe' that took place at the University of Vienna in July 2022. This was a wonderful experience for me: the different contributions from researchers from all over the world were very interesting and I greatly enjoyed being part of an international community, speaking English, and talking to people from other countries. I was also surprised to see so many young researchers dealing with questions of ageing delivering useful results. Their studies should be known to a much wider public – so there is still a lot of work to be done. It needs more publicity for the scientific analysis and results, therefore, co-researchers could also play an important role in the future as they can present the results of scientific research more authentic and with more credibility.

The participation in the project SEVEN made me want to celebrate my 70th birthday by inviting the family and a few friends and having a real birthday party. I realised that there are only a few friends that live close to my home, most of my friends are scattered throughout the whole of Austria or even abroad and they are too far away for inviting them for a party. And the family is mostly the brothers and sisters of my husband, since I have only one brother. But they will almost all come and stay for at least two days to celebrate with me. And there will be my son and my two Afghan foster sons to celebrate with me. It should be a celebration for life and not for the 70th birthday, a life in peace, satisfied, and filled with gratitude.

At the moment I am planning and organising for the party that will take place in three weeks. I want to celebrate that I had a good life so far. I am scanning and printing pictures from my early childhood until now for decorating the place. Looking at the pictures makes me realise how many things I have done, how many places I have seen, and how many people I have met. – I think without becoming part of the project SEVEN I would not have given this birthday celebration such an importance: a celebration of being thankful for a good life, for a happy life.

#### **Notes**

## **PART 8**

Future perspectives in the field of participatory approaches in ageing research

## PARTICIPATION FOR MISSION-ORIENTED INNOVATION

## A governance perspective

*Julian Stubbe, Anne Busch-Heizmann and Maxie Lutze*

#### **Introduction**

The topic of participation is currently receiving a lot of attention in Germany, especially with regard to research and development.1 A striking example of this is the Science Year 2022 "Nachgefragt" (in English: "Participate!"),2 with which the German Ministry of Education and Research (BMBF) focuses on the role of the general public and strives for an open dialogue between administration, scientists and people from civil society. This lighthouse activity radiates out to many other activities of ministries and stakeholders that want to bring scientific content closer to the citizens in a communicative way and initiate a dialogue between different groups.3

Participatory formats can look back on a long tradition. Not only in relation to scientific issues, event and workshop formats have developed that enable people to exchange their opinions and develop solutions co-creatively. This is also true when it comes to planning or strategic issues related to activities of public and political interest. These participation formats are less focused on scientific research questions, but rather on societal challenges, such as the planning of an urban neighbourhood or the improvement of care and health, and how corresponding solutions oriented to people's lifeworlds can be developed. Demographic change and the ageing of society is also a societal challenge. While knowledge about the form of change is increasingly widespread, the social challenge remains as to which solutions can be used to mitigate or positively influence the effects of change, e.g. in the context of regional structural change or in care.

The current boom of participation in political discourse in some countries and regions goes hand in hand with a changing understanding of politics in many areas of innovation policy. The German research landscape is currently experiencing demands for a reorientation of innovation policy towards a mission orientation. Through this orientation, innovations should be consistently geared towards solving societal challenges. This demand is not fundamentally new; what is added to the current discussion, however, is the focus on societal transformation. The coalition agreement of the current German government, consisting of Social Democrats, Greens and Liberals, commits to this new policy style in the context of its research and development policy (SPD, B90/Die Grünen, FDP, 2021). It is thus the declared goal of innovation policy and promotion to develop solutions for societal challenges.

This is now accompanied by the need to adequately involve the general public in shaping the very processes of change that are being sought. Participation becomes a prerequisite for innovation policy missions to be accepted by the population and for their transformative potential to unfold in people's lives. However, it remains unclear how exactly the involvement of citizens in the new mission orientation of innovation policy is to be shaped, at which level and on which topics it is to be implemented and to which preconditions it is tied.

This chapter will explore the questions of which challenges for participation go hand in hand with a mission-oriented understanding of politics and how the role of participation can be systematised in this context. Both questions are related to innovation activities that develop solutions for challenges of an ageing society. To this end, the development towards a mission-oriented innovation policy, as already indicated, will be outlined. Building on this, participation is systematised from a governance perspective using a policy cycle model. This is illustrated with selected examples of demographic challenges. Finally, the results are discussed and evaluated.

#### **Mission orientation as a new guiding principle of innovation policy**

### *Systemic transformations come into focus*

A mission-oriented innovation policy is increasingly becoming part of the German as well as international innovation systems (Lindner et al., 2021). The approach aims to bundle innovation processes that may be taking place in isolation from each other in the highly differentiated society with highly specialised scientific disciplines, economic sectors and administrative structures, and to focus them on crucial, current, societal issues. This includes a holistic understanding of innovation that encompasses not only the implementation of technical solutions but also societal changes for the solution of complex problems. In contrast to the promotion of selected technology areas, it is about a systemic approach to innovation that enables system transformations (Stubbe et al., 2021).

Not least, the Corona pandemic showed how much society depends on overcoming challenges by applying scientific knowledge. At the same time, it became clear that, above all, the successful transfer of technical and organisational solutions into practice is an indispensable step for overall success. The same applies to other major challenges, such as slowing down climate change and the societal adaptations required for this, or the ageing of society and the structural changes that go along with it. In this respect, innovations – and the societal capacity to produce them – do not only play the role of purely economic accelerators to strengthen the growth and market positions of companies and regions. Rather, the global challenge of the Corona pandemic highlighted the extent to which socio-technical innovations and their systemic coupling of the most diverse fields and sub-fields – from biotechnology and a digital health system to digital learning and public administration – are needed to overcome a challenge of such societal scope. In this respect, governance by state institutions should not be limited to regulating market-based framework conditions and remedying a market failure. Rather, the public sector is called upon to provide impulses in a guiding and proactive manner, to demand innovative services from actors and to enable the achievement of measurable goals.

Participation is crucial for such a mission-oriented understanding of policy. It coordinates the symbiotic relationship between the state's targeted innovation policy and the participation of the social actors who are to be the driving force as well as the compass of this change. In addition, it shows the multi-layered interlocking of innovations in their societal sub-areas when, for example, new digital administrative processes or learning methods meet people's practical lifeworlds. The discussions of the science and health system as well as democratic structures that emerged in the wake of the Corona pandemic also mark a need for communication and participation that bring people into exchange and negotiation of future developments. The participation of people in change and the new missions of innovation policy generates co-responsibility – an essential prerequisite for political goals and interventions to unfold a transformative effect as well. At the same time, however, this presents innovation policy institutions with the challenge of involving people constructively and finding ways to implement participation in innovation policy decision-making processes.

The mission orientation approach is not a product of the Corona pandemic, but it is gaining attention and importance as a result. Most recently, it was prominently called for in Germany by the High-Tech Forum and the Commission of Experts for Research and Innovation (Expertenkommission Forschung und Innovation – EFI) in their report on research, innovation and Germany's technological performance as a new policy style (Expertenkommission Forschung und Innovation [EFI], 2021, 2022; Hightech-Forum, 2021). In the report, the authors suggest a transformation orientation of innovation policy. At the same time, they advocate the creation of structures that enable public actors to act in an agile and forward-looking manner. Economist and advisor to the European Commission Mariana Mazzucato defines this as missions aimed at solving complex societal problems ("wicked problems") that initiate transformative systemic change (Mazzucato, 2021). In the context of innovation policy, this means focusing promotional and steering activities, impulses and impacts on a predefined major societal goal.

Although the implementation of this mission orientation is a more recent development, it is no longer just pie in the sky or a theoretical guiding principle but has already been tested several times in various innovation programmes (Dachs et al., 2015). For example, the Federal Government of Germany implemented the cross-departmental research agenda "The New Future of Old Age" within the years 2011–2016. With a total volume of around 189 million euros, research programmes of the ministries were bundled and consistently oriented towards the challenges and opportunities of a society of longer life (Federal Ministry of Education and Research [BMBF], 2011). The Federal Government's High-Tech Strategy 2025 is similarly characterised by a mission orientation, although here the focus is on technological progress, which in turn is oriented towards socially relevant areas of application – for example, medical care (BMBF, 2014). A particularly ambitious concept of a mission-oriented innovation policy is the European Commission's "Horizon Europe" research framework programme, which was launched in 2021. This programme contains five missions: "Adaptation to Climate Change, including Societal Change", "Beating Cancer", "Healthy Oceans, Seas, Coastal and Inland Waters" as well as "Climate Neutral and Smart Cities" and finally "Soil Health and Nutrition".4

The ageing of society is not a topic that is conceptually at the forefront of current innovation policy discourse. The political discourse in Germany peaked at the beginning of the 2010s, also caused and mirrored by the Science Year 2013 "The Demographic

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Opportunity".5 These and other measures led to the dissemination of knowledge about demographic structures and processes of change, including their social science laws. In current political programmes, demography is often included as a relevant background in other thematic areas, e.g. in topics such as health, shortage of skilled workers or regional structural change (EFI, 2022), which are of great social significance.6

#### *The role of participation and governance challenges*

Participation has a central role to play here: it should turn the new mission orientation into a democratic innovation policy. It is intended to inform participating citizens and stakeholders about relevant issues, to communicate democratic approaches and to disclose a variety of points of view. With the focus on public participation, today's missions differ from missions such as the moon landing in the 1960s. This mission was implemented entirely from the top down by the US government and accordingly drew strong social criticism. In contrast, the new missions of research and innovation policy should be consistently oriented towards societal challenges and involve the population. In this respect, Mazzucato demands that participation be part of the development and articulation of missions from the very beginning: "Participation requires reimagining the future together" (Mazzucato, 2021). Participation should not be reserved for committed elites but should be distributed across all levels of an innovation system. This approach would then also involve economic actors and, above all, the broad population. This requires openness as well as the ability to learn and adapt in the decision-making processes of institutions so that feedback from the groups involved does not only have a marketing effect but that transformations are also actively shaped (Mazzucato, 2018).

The call for more participation is not new. Related innovation policy approaches, such as "Responsible Research and Innovation" (RRI), aim to ensure participation not only in concrete research projects but already in innovation policy decision-making processes. With regard to institutional implementation and the associated legitimisation of a policy change, an important critique also begins: In their comparative analysis of institutional implementations of mission-oriented approaches, Frahm et al. show that these are often based on a "deficit logic" (Frahm et al., 2022). If the change is acknowledged, this could at the same time be used as confirmation that innovation policy has lacked acceptance in the past. In other words, so the possible reproach, innovation policy could not have had the desired economic and prosperity-promoting effect in the past, and implementation of participation would be "proof" of lacking efficiency. At the level of the Organisation for Economic Co-operation and Development (OECD), for example, the authors show that societal involvement in the management and regulation (governance) of innovation was only given institutional legitimacy by helping to increase acceptance among the population and to deal with uncertainties in demand. The authors' criticism is that participation is legitimised less from a democratic self-understanding than as a solution to problematic governance. Taking up this criticism, such a narrow understanding of participation – solely as an instrument to increase acceptance among the population – bears the danger that participation will fail. This is because it is not seen as a source of newness and as a force for co-design but as a downstream fulfilment of duty.

Another point of criticism is the failure so far of participatory formats to achieve broad participation. All too often, the implementation of participation only reaches certain population groups and individuals, that is, for example, highly educated, privileged, middle-aged and politically interested people, while, for example, groups that have no relation to science or people with low digital literacy, including older people, are not reached. The EU project "PRO-Ethics" points out the challenge that successful implementation of participation must include creating low-threshold access. This is the only way to involve those groups that have a legitimate interest in having a say. According to the project's findings, this also means involving actors who are not traditionally part of the innovation system. These include citizens or civil society organisations (PRO-Ethics, 2021). This criticism does not mean that entire social groups cannot be represented by individual representatives of those groups. Rather, the criticism draws attention to the fact that the implementation of participatory formats is associated with its own ethical tasks. These factors, such as lowthreshold access, generally understandable communication as well as regional diversity and target-group-specific channels, must be taken into account and translated into appropriate solutions. This may require considerable effort from innovation policy institutions and organisations.

Against the backdrop of this criticism, participation requires a reformed self-understanding of innovation policy organisations as well as coordinated efforts to constructively put the values and promises associated with it into practice. The organisations, whose strategic and practical efforts influence new mission orientations and thus at the same time the quality of participation, include not only the governmental and non-governmental institutions that promote innovations in a medium-effective way but also the advisory and implementing organisations, such as project management agencies, research institutions, innovation agencies and economic as well as civil society actors, which are also part of the governance structure of innovations.

To support the practical implementation of participation in these governance structures, successful examples of participation along three phases of the innovation policy decisionmaking process are presented below. A special focus is placed on examples in the context of age-related issues.

#### **Policy cycle approach on participation in innovation governance**

Innovation policy decision-making processes can be described on the basis of a policy cycle (Schubert & Klein, 2020).7 In this model cycle, a problem is identified (problem definition) and, if necessary, placed on the political agenda (agenda setting). Policy measures are then developed and decided upon (policy formulation) so that they can be implemented in the next phase (policy implementation). In the evaluation phase, the achievement of objectives, efficiency and effectiveness are examined (policy evaluation), after which the policy closes the process (policy termination) in order to obtain capacities for a new problem definition. The fields of application of participation listed below already support decision-making processes and can each be structured in the sense of co-production. While the model basically shows five phases (Figure 28.1), the following text is reduced to three phases (agenda setting, implementation and realisation of research) and two illustrative practical examples for reasons of space.

#### *Co-design: participation for agenda and topic development*

In innovation policy agenda setting, a specific political goal or problem is put on the agenda. Such a societal problem can be, for example, the demographic change with the accompanying ageing of society – with a simultaneous increase in the burden on care staff

*Julian Stubbe et al.*

*Figure 28.1* Phases of the policy cycle

(Lutze et al., 2021). A resulting political goal could be to formulate and implement innovative (also technological) requirements for age-appropriate care while at the same time improving working conditions.

In principle, democracies are characterised by a multitude of politically relevant and possibly competing issues, as well as by a multitude of actors involved in agenda setting: for example, by the separation of powers of government and parliament or by consultative processes of scientists, experts or other stakeholders.

Participatory activities here have a forward-looking as well as lifeworld-related character. Varieties of formats that involve citizens from different backgrounds in addition to the traditional actors of the innovation system have already been successfully implemented for many years. One example of this is future workshops, in which people develop a vision of the future for a social challenge such as demographic change and the increasing ageing of society. These have certainly had an impact on innovation policy in the past. For example, the Demography Workshop Talks of the Federal Ministry of Education and Research (BMBF) in 2013 brought together older people and experts and resulted in the very successful funding measures of the "Senioren-Technik-Botschafter" (in English: senior technology ambassadors) and municipal advice centres ("Kommunale Beratungsstellen") (2014–2016). A forward-looking perspective for citizens is also provided by technological test environments and experience spaces, so-called "living labs". Engels et al. point out that these can also be places for jointly developing socio-technical futures (Engels et al., 2019). Instead of being mere enablers of technology, test environments could serve as real societal tests for the desirability of certain transformations, the authors argue, based on a comparative case analysis. This, they argue, requires rethinking notions of success and failure, planning with reversibility in mind, and a closer examination of the distribution of power in such environments.8 They argue that test environments should not only be viewed as zones of low technical regulation to drive innovation but should also be used strategically to develop socially desirable governance frameworks associated with emerging technologies in real time.

All in all, when considering the problems and possible innovative solutions for dealing with the increasing ageing of society, it is important to systematically include the groups of people who are directly affected by this (older people, caregivers, family caregivers, care communities, etc.) in the research processes from the very beginning – i.e. already when setting the agenda. Only in this way can innovation research oriented towards the needs of those affected succeed in the long term. If this is only taken into account at a later point in time, the innovation process runs the risk of missing the needs and only generating supposed acceptance afterwards. To be more concrete, if participation takes place at a later point in time, there is the danger that the general need for a certain technology (e.g., a certain assistance technology for persons in need of care) is not questioned itself, and that participation is for the sole purpose of confirming the benefits of the technology. In the worst case, stereotypes are reproduced here. In contrast, when the group of people for whom this technology is being developed is included from the beginning, questions of real needs and system requirements (and the question of whether this technology is even needed at all) can be revealed systematically from the beginning on.

## **Box 1: Case I – The path from demonstration of technology to participation in research and innovation**

Under the motto "Forschung für mich – Forschung mit mir" (in English: Research for me – Research with me), the VDI/VDE Innovation + Technology GmbH initiated a dialogue between the older generation and science and research for the Federal Ministry of Education and Research back in 2011. Since then, a series of measures have taken place in which older people were asked about their requirements for new technical possibilities and were able to engage with them.

Within the format of Senior Technology Day (within the framework of the AAL Congress), the focus was on trying out and evaluating exhibits and products. For this purpose, older people were invited to get to know ideas from research projects that developed ideas to address requirements of demographic change. Guided groups visited various stands of an industrial exhibition and discussed with researchers and developers how they would like to see ageappropriate technology, whereby the suitability of the systems for everyday use proved to be particularly important. In the course of an additional evaluation of the visited stands according to three criteria (expected benefit of the presented technology, comprehensibility of the stand presentation and own interest in use), the iHomeLab of the Lucerne University of Applied Sciences and Arts was awarded a prize by the participants. In a repetition of the format, older people visited research projects of the BMBF funding measure "Altersgerechte Assistenzsysteme für ein gesundes und unabhängiges Leben" (in English: Age-appropriate assistance systems for a healthy and independent life), where they intensively tried out, tested and evaluated the technical developments. In the process, the researchers and developers received feedback and suggestions on their technical developments, which also provided information about needs and perceptions.

To continue the dialogue, the format "Research for me – Research with me" was further developed to strengthen the involvement of the user perspective at an earlier stage. The concern here was to readjust the role of older people and turn them from "affected to involved" (Source: Federal Ministry of Education and Research (2012): Forschung für mich - Forschung mit mir: Ergebnisse der Senioren-Werkstattgespräche zur Forschungsagenda der Bundesregierung für den demografischen Wandel "Das Alter hat Zukunft". Berlin, Bonn).

With this claim, older people were given the opportunity to contribute their suggestions to research, development and innovation as early as the formulation of the "research questions of tomorrow". Thus, the format of the Seniors' Workshop Talks was born in 2012, in which older people from different regions of Germany discussed the contents of the Federal Government's research agenda for demographic change. In cooperation with the German National Association of Senior Citizens' Organisations (BAGSO), four locations were selected in northern, southern, eastern and western Germany. Through dialogue with the older generation, the aim was to identify feedback, new ideas and pioneering impulses for age-appropriate innovations. The central insight thereby included criteria that defined the participants in the design of new technologies:

In 2013, the dialogue format was taken up with the so-called "Demography Workshop Talks" and expanded to include actors from academia, with older people and researchers jointly discussing research needs, access routes and new methods. The six "Demography Workshop Talks" were dedicated to one research field and took place between March and July 2013 at a research institution with an appropriate thematic focus. In a concluding expert discussion, the findings were brought together and discussed across research fields.

## *Results of the formats*

In the senior citizens' workshop discussions, a need for information about current and new technical developments in the older generation was called for. Compared to younger age groups, who are often introduced to new technologies through school, training and work, older people come into contact with them much less frequently. There is a lack of own or mediated experience; especially from the same age group. It also became clear that the desire for knowledge transfer by people of the same age is often preferred. The BMBF initiative "Senioren-Technik-Botschafter" (in English: "senior citizens-technology-ambassador"), also launched in 2013, addressed this issue: Older people with technical experience acquire and impart knowledge and experience with new information and communication technologies. Low-threshold and practice-oriented approaches that also reach very old people were in demand (including the internet, mobile devices, assistance systems for living, mobility and care, ICT applications to promote or maintain health, and consumer electronics).

### *Conclusion*

Research has a key role to play in successfully shaping demographic change: it analyses the needs of an ageing society and designs concepts for adapted system solutions consisting of technology and services for a society of the advancing years. The central task is to involve addressees and users in the research and development processes at an early stage and to bring the results of research more quickly into practice and thus also more quickly to the people.

#### *Sources*

### *Co-implementation: implementation of innovation programmes and selection of projects*

The implementation of agendas within the framework of innovation programmes essentially determines how the transformation potential of a topic can be exploited in terms of impact for a desired goal in concrete projects. It is a matter of preparing and making decisions about which approach, which project idea or which partner constellations have the best chances of making a constructive contribution to achieving the programmatic goal. So if the agenda setting formulated in the previous phase was, for example, the political goal of researching innovative (also technological) needs for age(ing) appropriate care while at the same time improving working conditions, the task now is to implement this political goal in a participatory manner by means of suitable measures.

These decisions are part of the substantive translation of laws, ordinances or – quite essential for innovation policy – budget titles into concrete material benefits such as project funding. In the context of funding, this process presupposes that goals have been defined and ideas exist as to which research and development work can be used to achieve these goals.

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The majority of these processes have so far been carried out by institutions, sometimes with the participation of experts. These are, for example, consultations on the priorities of funding calls and jury processes in which project proposals are evaluated on the basis of outlines or competitive idea presentations (so-called "pitches") and thus given a chance to receive funding. Currently, these processes are definitely evolving: there is less selection behind closed doors; transparency and diversity of the jury are gaining in importance. For example, the juries of the "Kreativpiloten" (in English: creative pilots) and "Innovation Programme for Business Models and Pioneering Solutions" programmes of the Federal Ministry for Economic Affairs and Climate Action (BMWK) are made up of people who bring not only scientific expertise but also experiential knowledge from entrepreneurial and professional practice. Another example in which the participation of affected groups of people is already systematically included in the project selection phase is the BMBF's announcement of the guideline for funding projects on the topic of "Technologiegestützte Innovationen für Sorgegemeinschaften zur Verbesserung von Lebensqualität und Gesundheit informell Pflegender" (in English: Technology-supported innovations for care communities to improve the quality of life and health of informal caregivers) (BMBF, 2021). Here, the selection of suitable project outlines was not only carried out by a scientific review panel but also by a citizens' advisory board made up of stakeholders with a connection to informal care (see Box 2).

This experiential knowledge enriches the selection process by linking the novelty value of a project to its practical impact. However, such a broad participation of different groups or citizens in these processes has so far been the exception rather than the rule.

## **Box 2: Case II - Integration of a citizens' advisory board in the BMBF call for project proposals "technology-based innovations for care communities to improve the quality of life and health of informal caregivers"**

The call "Technology-supported innovations for care communities to improve the quality of life and health of informal carers" of the Federal Ministry of Education and Research (BMBF) is an example of research funding in which participation is actively pursued from the outset. The announcement focuses on the growing group of informal carers and aims to promote research and development of socio-technical innovations for care communities. Care communities include the network of informal caregivers and other actors (e.g. associations) as well as professional carers, if available. Innovative technologies should improve the quality of life and health of informal caregivers by facilitating their everyday life and strengthening their selfhelp and competence to act. The announcement results from the BMBF research programme "Miteinander durch Innovationen – Interaktive Technologien für Gesundheit und Lebensqualität" (in English: Together through Innovation – Interactive Technologies for Health and Quality of Life) and is assigned to the topic area "Digitally Supported Health and Care".

Participatory research and development is at the heart of the measure in two ways:

• Involvement of a citizens' advisory board: The implementation of the announcement is actively accompanied by a citizens' advisory board from the beginning. This consists of representatives of informal caregivers in Germany. The assumption is that the members of the advisory board, who have a corresponding background of experience as informal caregivers, can contribute this experience through their participation to the research and development of technologies that are intended to relieve the everyday life of this group of people. This makes a decisive contribution to the later successful use of the technologies to be developed and to their acceptance by the target group. Interested persons could apply to participate in the citizens' advisory council, and the council was composed in such a way that it was as heterogeneous as possible with regard to various criteria (e.g. gender, type of care situation). The citizens' advisory council was involved in the selection of suitable projects alongside a scientific expert panel and accompanies the selected projects during the project period. The task of the citizens' advisory board members here is to actively contribute their perspective as informal carers, to evaluate the research results with regard to the needs of informal carers and to make recommendations to the project members.

• Participatory research and development: The funded projects should explicitly implement participatory methods; the research results should result from participatory development. The evaluation of the participatory research approach was one of the essential criteria in the selection of suitable projects. In order to implement participatory methods, funding is provided not only for content-related collaborative projects but also for an accompanying project whose task is to support the participatory research and development processes. For this purpose, a Participation Lab is to be set up, which is to serve the exchange of information between the collaborative projects and in which participation methods can be "tried out". Furthermore, it is the task of the accompanying project to advance the theoretical foundations of participation research, to contribute to the corresponding theory formation and to integrate these into the research field.

#### *Sources*

#### *Co-creation: participatory implementation of innovation activities in projects*

The participation of citizens and users in research and development projects has advanced considerably in recent years. Approaches such as user-centred design, "responsible research and innovation" or integrated research have already been implemented in research programmes and calls for projects to involve future users in the development process from the very beginning of the research. This development also applies in particular to research into innovative technologies for dealing with demographically induced new demands on care (BMBF, 2021).

Subsequently, a variety of methodological approaches was developed on how impulses, suggestions and experiential knowledge from everyday life worlds can be absorbed and processed. This development is being continued: In the new EU research framework

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programme "Horizon Europe", the implementation of open science principles is an important selection criterion for funding research and innovation projects. In the new BMBF programme "Together through Innovation", too, integrated research is a central crosssectional task and a requirement for the research attitude of the projects (BMBF, 2020). The aspect of the demographically changing society with the resulting new needs for health and quality of life takes a central place in this programme with the topic area "Digitally supported health and care". The inclusion of all relevant knowledge carriers, especially citizens, users and civil society in the sense of "citizen science", continues to be an integral part of the co-creation of project content.

The participation of citizens in research designs, such as citizen science projects, can make scientific activities in research and innovation programmes more transparent. Citizens can contribute to penetrating global societal challenges ("Grand Challenges") such as demographic change at the local level (Chicot & Domini, 2019). In turn, public research and development becomes more transparent. Irvin and Stansbury see a high degree of information sharing from day one, transparent rules for decision-making processes and dialogical mediation as fundamental framework conditions for resolving conflicts that may arise within participatory processes and for accelerating decision-making processes (Irvin & Stansbury, 2004).

In the orientation of this programmatic call, it has become apparent that although it should be clearly articulated as a requirement, methods should not be strictly prescribed. At this point, research and development thrive on being open and experimental. In addition to the diversity of methodological approaches, this also implies that project goals can change due to impulses from participatory activities and that a project can take a different direction than initially planned. If programmes do not allow this openness of projects, they will not be able to open up to participation in the long term, because participants would become vicarious agents of the experts. Here it is necessary to strengthen an open culture of innovation so that new solutions can emerge from the experience of citizens and be implemented for specific problems.

#### **Concluding remarks**

The examples compiled show how diverse and constructive participation is already being implemented today, especially with the constructive participation of older people. They show that participatory instruments can be creative, forward-looking and effective as well as a source and guide for innovation. They can thus be an essential element for a missionoriented innovation policy. The policy cycle approach used here can be used to better systematise participation and integrate it into innovation policy decision-making processes.

For the systemic participation of older people, it is particularly important to recognise that demographic issues are no longer dealt with in isolation, in terms of age issues. Rather, the ageing of society has become a background issue for a whole range of topics that concern innovation policy. In the examples presented, these were in particular health topics or technologies of human-technology interaction. Other topics in which the ageing of society forms an essential background are, for example, regional structural change or education. In all these topics, the label "concerns older people" does not come first, but they are topics in which generational issues play an essential role and should therefore be discussed and constructively shaped by young and old together.

Missions, which are already being defined today and will be defined even more in the future within the framework of innovation programmes, affect people across age groups. This insight must also be reflected in the form of participation, which should not isolate age groups so much as connect and integrate them. For participation to be implemented with integrity and credibility, creating a culture of openness and willingness is necessary – and this from all actors and age groups. In mission-oriented participation, the creation of something new is not reserved for institutions or researchers. Rather, citizens are involved in their creative competences and their experiential knowledge. Learning from the experiential knowledge is an important goal for creating innovative technologies that are really sustainable and useful for the affected group of people. As the examples have shown, this can work in all phases of the innovation policy decision-making process: from the articulation of new thematic priorities to their implementation and the participatory implementation of research.

In order to gain impetus from these processes, a very substantial effort is needed not only to allow people who are already in a privileged position to participate. Enormous efforts are needed by all stakeholders to create a culture of innovation in which all segments of the population are given the opportunity to participate in innovation and thus in fulfilling the mission of equal participation for all – without reproducing discrimination and stereotypes. With regard to older people, this means that the governance of innovations as well as the actors involved should not integrate older people from a deficit perspective, but rather constructively transfer their experiential knowledge to new topics. Conversely, this means that older people also need to be empowered to participate, to build skills and to break down barriers. This concerns, for example, finding a common language, which can be a particular barrier in innovation topics.

For the governance of innovation, this also involves structural challenges. For the implementation of a mission-oriented innovation policy, the role of state institutions must be reflected and, if necessary, rethought. For this, it is necessary to create the necessary capacities. On the one hand, these consist of competencies that include reflexive methodological approaches as well as transfer knowledge and must be anchored in institutions. On the other hand, the innovation and funding policy instruments must be in place to enable participation and constructively embed it in the innovation process, as well as to strengthen the necessary innovation culture. This includes instruments that specifically enable participatory formats, such as citizens' councils or open foresight processes, and instruments that call for constructive participation in research and create the experimental space for it. Innovation policy organisations should also live out their openness in the sense of experimental governance and openly develop capacities.

#### **Notes**

1 Parts of this text have been published elsewhere (see Stubbe et al., 2021). That is in particular, parts explaining the developed policy cycle of mission-oriented participation. The text presented here is a transfer of this approach to demographic issues of innovation policy and in this respect is an original contribution to the debate.

2 https://www.wissenschaftsjahr.de/2022/english

3 An overview of the Year of Science activities and resources can be found on the homepage of the Federal Ministry of Education and Research (BMBF), including current research programmes with a participatory focus: https://www.bmbf.de/bmbf/de/ueber-uns/wissenschaftskommunikationund-buergerbeteiligung/buergerbeteiligung/buergerbeteiligung.html

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### **References**

## EMPLOYING CITIZEN SCIENCE TO UNDERSTAND THE CONTEMPORARY NEEDS OF OLDER ADULTS ACCESSING AND USING TECHNOLOGY IN A PANDEMIC

*Hannah R. Marston, Deborah Jane Morgan, Gemma Wilson-Menzfeld, Jessica Gates, Carol Ann Maddock, Elisabeth J., Jenny Philips, Gavin Bailey, and Julie Nicholson*

#### **Introduction**

The reliance on technology during the COVID-19 pandemic grew considerably, with digital technology being a fundamental tool for education, work, social connection, and civic participation, to name a few. However, the inequitable access of technology use for those citizens who can access and use online support tools, and those citizens who are excluded from this support, heightens existing inequalities, including health inequalities.

The digital divide, or digital exclusion, is the gap between those who are fully connected to technology and those who are not. Historically, this gap was considered as being simply around lack of access to technology, but this understanding has grown, and there are now three recognised levels of the digital divide: access, skills and usage, and the offline tangible outcomes of internet use, i.e. both the personal and civic benefits that individuals derive from being online (Blank & Groselj, 2014; Scheerder et al., 2017; van Deursen & Helsper, 2015). Therefore, digital exclusion may not only relate to access and digital skills but also its possible associations with the lack of interest or understanding of the advantages of use (Yu et al., 2016).

It is imperative to consider digital inclusion as being multifaceted, as even among users with some digital skills, difficulties remain. A recent study completed by some members of the research team highlighted the complexity of digital exclusion, as even older adults who owned smart devices and regularly used social media technology experienced barriers which negatively influenced technology use (Wilson et al., 2021). Several biopsychosocial barriers impacted use of technology; physical functioning (dexterity and visual issues), self-efficacy, fear, culture and communication, and lack of social capital. It is essential to address the barriers to technology use to reduce this digital divide and increase inclusiveness of the use of technology.

The pandemic brought the 'digital divide' to the fore, further widening the divide between those with and without digital technology access or skills. Organisations across the UK responded to this crisis with initiatives aiming to provide digital technology to those without access and to connect them to the internet (e.g., Livingstone, 2021; Vodaphone, 2021) and to promote digital learning remotely (e.g., Good Things Foundation, 2020; Livingstone, 2021). This short-term reliance on technology as a direct outcome of the COVID-19 pandemic will almost inevitably continue to cause longer-term issues. There is now an urgency to continue promoting digital access, and to also develop digital confidence and digital skills, to enable individuals to independently access online content and support.

One solution to address these factors is through inclusive design – co-designing digital devices/social applications with older people. Smartphones and tablets provide an affordable, accessible entry route to the digital world. However, the interfaces are not user intuitive and can be off putting for individuals who lack basic digital skills (Nurgalieva et al., 2019; Williams & Shekhar, 2019). Although there are apps which simplify smartphone interfaces (e.g., Grand Launcher), these have limited functionality: e.g., SOS button, SMS text, and flashlight, and are not representative of the needs of older people. There is an urgent need to co-develop an application that has the functionality to reflect their needs and build digital confidence.

#### **The project**

The purpose of the 'Adapt Tech, Accessibly Technology' (ATAT) project (2020) was to explore and understand the needs, barriers, and challenges of smartphones and mobile apps experienced by older adults. ATAT aimed to identify, from new user perspectives, by employing a citizen science (Haklay, 2015; Riesch & Potter, 2014) approach with older adults and stakeholders to understand what basic adjustments are needed or should be considered to existing, affordable technology to support digital confidence and literacy among adults who are over the age of 50 years. Continuing with a citizen science approach, the second aim of this study was to identify what technological innovations and prototype applications enable new users to confidently access digital platforms.

#### **Ethical approval and informed consent**

Prior to participant recruitment and execution of workshops, ethical approval was sought initially from the research ethics board at Swansea University [22021b] and once approved, enabled respective submissions to be submitted at Northumbria University [2887] and The Open University [HREC/3869/Marston].

#### *Aim of the book chapter*

This book chapter describes the research design and findings from the study ATAT (2020) and contributes to the fields of gerontology, social sciences, gerontechnology, health psychology, human computer interaction (HCI), and research methods. Case exemplars are provided throughout the chapter to illustrate findings from the ATAT project.

#### *Hannah R. Marston et al.*

#### *Older adults' experiences of digital exclusion*

There is a growing body of literature surrounding experiences of the digital divide, and the impact it can have on citizens both young and old, who are residing in various communities such as rural, urban, and metropolitan environments (DiMaggio et al., 2011; Freeman et al., 2020; Marston, 2019; Marston et al., 2021, 2020a; White et al., 2020; Wilson et al., 2021). Yet, older adults still use the internet to a lesser extent than younger generations, despite the sharp rise in internet use from those over 75 in the last decade (Eurostat, 2017; Office for National Statistics, 2018), and as a result, are more likely to be considered as being digitally excluded (Age UK, 2018). Ihm and Hsieh (2015) note how old age can be a predictor of the lack of access to technology, which in turn may mean that they do not experience the same potential benefits as younger cohorts. It is of course equally important not to consider older adults as one homogenous cohort with the same attitudes to technology, the same digital needs, or having the same digital barriers (van Deursen & Helsper, 2015).

Digital poverty is a further factor associated with digital exclusion, connected to the financial constraints that many citizens experience and plays a pivotal role in the digital divide, coupled with digital literacy varying across age cohorts, with some older adults lacking the digital skills needed to execute basic activities (Nimrod, 2016; Schumacher & Kent, 2020). Son et al. (2021) explore the challenges of reaching vulnerable citizens who do not have access to digital technologies to access resources; Schumacher and Kent (2020) categorise vulnerable citizens as older adults who are the oldest, and who have low incomes, and low education. It is vital to consider this intersectionality of existing inequalities, and its role in digital inequality, which in turn further exacerbates inequalities through lack of digital access.

In some instances, digital inequalities play a key role in older adults being socially excluded, from technology-related leisure activities and access to services because of having limited or no digital literacy skills (Hebblethwaite, 2017). Increasingly digital forms of exclusion are being recognised within conceptualisations of wider forms of social exclusion (Leppiman et al., 2021). Although many citizens had engaged and used various forms of digital devices, and platforms to virtually connect to, and receive social (Gabbiadini et al., 2020) and health-related support (Fisk et al., 2020), many others were excluded, and this added a new dimension to inequality (Seah, 2020).

While cost and access to digital devices/technologies are significant issues, other factors such as perceived usability, and usefulness can impact uptake (Heinz et al., 2013). It could be argued that designing technology with and for older people may overcome some of these barriers. Throughout the pandemic many citizens have been using various forms of digital devices, and platforms to virtually connect to, and receive social support (Gabbiadini et al., 2020) and health-related support (Fisk et al., 2020).

During the ATAT workshops, the older co-designers were encouraged to share their experiences about the different types of barriers, challenges, and concerns that they have encountered with technology and include,

I've got a laptop which I'm using at the moment, and I've also got a smartphone recently err but it's far too small and I don't like using it at all, I much prefer to have a keyboard in front of me.

I predominately use a laptop and I have also got a smartphone and I get lost on it, why, because it is different, why cannot we not have consistency across platforms?

[…] the tablet I think I could use if it didn't have these millions of things on it

I've been going back and forth to hospital from surgery etc. and they've been asking for selfies of the condition that I've got, erm so I've had to use my phone for that and send them pictures, but I couldn't' do it on the laptop. So, I can do certain things with WhatsApp that I can't do on in an email and so I've got to go between them all, and there's WhatsApp and Messenger, but I'm never quite sure which is the best one to use.

I think one of the disadvantages is cost. Because you have to buy a device but then you have to sign up to a broadband package erm that is really a barrier.

These statements illustrate a wide breadth of concerns experienced by the older co-designers ranging from several apps (pre-installed) onto devices, to the cost of accessing broadband and switching between different platforms, which for many people can be confusing, and irritating. The cost of monthly broadband services is unaffordable for some on a fixed income, resulting in them being categorised as in 'digital poverty'. Digital poverty not only hinders individuals from being able to connect with friends and family members but limits their opportunities of being able to access services and garner important information, (e.g., health and government; Marston et al., 2021).

#### *Co-production*

User-centred design is not new, it is however a more passive form of participation, one that older adults are not often engaged in, and as such technology is developed without them in mind (Ivan & Cutler, 2021). This may be because involving older adults in technology design can be perceived as challenging by designers because they are a heterogeneous group with regard to their needs and the way they use and engage with technology (Grates et al., 2019). Alternatively, power imbalances between designers, and older people may mean that the voice of the older person is not prioritised. Even when older people are the focus of technological design, there is often a disconnect between what older adults want and what designers think they need (Mannheim et al., 2019). Often the functionality of applications aimed specifically at older adults is based on stereotypical ageist assumptions of how older people use technology and what they use it for (Mannheim et al., 2019).

The reason for this is twofold. First, as with any form of design, the idea is based on a premise of who the end-user is and how they will use the prototype (Ivan & Cutler, 2021). Second, designers of technology are typically younger and therefore are less likely to design features that facilitate older people's interaction with technology (Ivan & Cutler, 2021). Furthermore, technological innovation is being driven by feasibility rather than the needs of the end-user (Rießenberger, 2021) thus contributing to the digital divide, and creating a self-fulling prophecy through product design and marketing aimed at younger cohorts.

One approach to overcoming issues such as usability, lack of confidence in technology, and low digital literacy is for technology design to adopt a participatory or co-design approach with 'older end-users'. Participatory or co-design is a democratic approach to design where older adults or other end-users are central to the design process. Participatory design is on a continuum, which ranges from doing to (informing and educating) through doing for (engaging and consulting) and ending up with doing with (co-production and co-design) (Slay & Stephens, 2013). It has been argued that to date participatory co-design has been overly paternalistic (Peine et al., 2014; Rießenberger, 2021) and focused at the 'doing to' end of the continuum. Indeed, Peine and colleagues (2014) argue that too often older adults have been assigned the role of object rather than subject, as is the case with user-centred design.

Yet participatory design when undertaken at the 'doing with' end of the continuum, where older adults are equal partners in the process can overcome many of the issues experienced with technology, instilling confidence in the older person. However, care is needed even within participatory approaches to design to ensure that the participatory approach is neither paternalistic, ageist, or stigmatising for the older adults involved in the co-design (Rießenberger, 2021). This is something the ATAT research team were conscious of during the planning of the co-design workshops.

#### *How we embedded citizen science and participation throughout the ATAT project*