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Participatory Health Research with Older People in the Netherlands:
Navigating Power Imbalances Towards Mutually Transforming Power
Barbara C. Groot
Email b.groot@vumc.nl
Tineke A. Abma
Email t.abma@vumc.nl
Department Medical Humanities, VU University Medical Centre, Amsterdam Public Health Institute, Amsterdam, The Netherlands
Abstract
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Recently, policymakers intend to transform the welfare state to a ‘participation society’ in the Netherlands. This neo-liberal orientation is legitimized
by the notion of ‘self-sufficiency’. Against this backdrop we sketch participatory health research (PHR) and its history, followed by the description
of our own approach to PHR and principles of PHR encompassing three steps: (1) collecting experiences of the those whose life (or work) is the
subject of the study as a starting point for mutual learning, (2) ongoing dialogue with different stakeholders which is strength-based and extending
their horizons, and (3) collaborative action and monitoring outcomes. We focus on older people and historical/cultural differences between different
generations which have implications for PHR and for addressing specific groups of older people. We present two examples: one concerning a group
of older people in a residential setting and the other concerning a group of baby boomers in a WHO Age-Friendly City project.
Keywords
Dialogue
Relational empowerment
Facilitation
Power
Older people
Participatory health research
Foreword
Mrs. Caring (pseudonym) is a Dutch older woman in her 90s living in a nursing home. When we met her for the first time, she said that—despite her
limited mobility and hearing problems—everything was fine. At a later visit, Mrs. Caring took part in a lively conversation with a group of women her
age during which they were emotionally voicing their concern about the bad meals. Mr. Daring (pseudonym) is an articulate Dutch man aged 73, living
at home in a suburb of Amsterdam. He and a group of other active older baby boomers are involved in an age-friendly project to improve their
neighbourhood. When they find out that the professionals involved are taking the credit for what the older people have done, Mr. Daring is eager to
assert control.
As a participatory researcher, how do you create room for a greater say in service delivery by older people admitted to a nursing home? How do you
support older people who are commonly seen as passive and silent, and who often do not dare to ‘complain’, like Mrs. Caring, fearing repercussions?
And what do you do as a researcher when you enter into a situation in which the research project ownership on the part of the older people concerned
—a key principle in participatory health research (PHR)—is threatened by unintended actions on the part of professionals, as in the case of Mr. Daring?
In both situations prevailing power imbalances run counter to the democratic ideal of mutually sharing and transforming power in PHR.
In this chapter we present the approach we took in two studies with older people from different generations. We will share the challenges we
encountered and the lessons learned about the use of PHR in sharing power, facilitating dialogue and mutual learning between stakeholders. We will
show how we navigated tacit tensions between stakeholders and how we tried to ensure that all voices are heard and genuine dialogue and action take
place in a context in which the voices of older people tend to be marginalized.
But first, we will describe briefly the Dutch regional context in the Netherlands. Then we will provide an impression of the intellectual history of PHR
in the Netherlands and provide key insights and approaches that have inspired us and are informing our Dutch practice.
Regional Context: The Netherlands and theSo-Called Participation Society
In many European countries, healthcare reforms are taking place to deal with the aging population and economic crisis (European Commission 2014,
2016). The Netherlands is intending to transform itself from a welfare state to a ‘participation society’, a concept introduced by a neo-liberal
government.
The transformation to this so-called participation society consists of reforms in different interrelated areas: a normative reorientation, a shift from
residential to non-residential care, decentralization of responsibilities and expenditure cuts (Maarse and Jeurissen 2016). Firstly, the normative
reorientation is more or less identical to what is happening in many European welfare states that are cutting back their responsibilities in care and
emphasizing ‘self-sufficiency’ for care needs (Grootegoed 2013). Secondly, the government is supporting a shift from residential to non-residential
care. This transition is in line with the trend of a ging in place (Wiles et al. 2012), a popular concept in current aging policy. Finally, in 2015 a transition
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in the organizational and financial structure of healthcare took place in the Netherlands. The transition was accompanied by a budget cut of 25% for
support and home care. The budget cuts put the aim of aging in place and participation under great pressure.
Given this context, we are critical of the notion of participation that is being proposed. Participation seems more like a form of co-optation and a
unilateral form of power. Under these circumstances, we think PHR is urgently needed to redress power imbalances and work towards the mutual
sharing of power to transform socially unjust situations.
PHR in theNetherlands
Intellectual History
The tradition of PHR in the Netherlands goes back to the 1960s when the student revolts and democratic ideals stimulated the inquiry into action
research (AR). In the 1970s and 1980s, a whole array of AR approaches was developed under various names such as decision-making or utilization-
focused research (beslissingsgericht onderzoek in Dutch) and practice-based research (praktijkonderzoek in Dutch). What all those approaches had in
common was the aim to improve the practical impact and use of scientific research. An articulate group of scholars criticized some of these approaches
for being positivist and managerialist in orientation, coining the term handelingsonderzoek after the German term of Heinz Moser handlungsforschung
(Boog 2007). Dutch handelingsonderzoek scholars are, for example, Bos (2016), Donk and Van Lanen (2012), Jacobs (2001), Lieshout (2013), Snoeren
(2015) and Weerman (2016).
In recent years there has been a movement to increase the participation of people whose lives are affected by health issues by consulting them over the
course of developing and implementing health research studies. People affected by the issue being studied are, for example, consulted in advance
regarding research topics and priorities (Abma and Broerse 2010; Caron-Flinterman 2005; Dedding 2009; Elberse 2012; Nierse and Abma, 2011;
Schipper 2012; Teunissen 2014; de Wit 2014). This has led to an increasing repertoire of more innovative data collection methods to engage study
participants in a more active way in research, for instance, as co-researchers (Bindels et al. 2014; de Wit et al. 2013). More widely, however, it
continues to be more likely in health research that those without lived experience and other external players lack the commitment to addressing
epistemic injustice (Fricker 2013) and social inequalities in health provision. Epistemic injustice captures the kind of discrimination arising when
unfair biases cause people to underestimate the credibility of knowledge of members of often socially disadvantaged groups. PHR takes a more radical
view and includes moving beyond understanding of the individual in order to address societal and structural injustices through a mutual sharing of
power.
Our Approach to PHR
Our work is inspired by a hermeneutic-dialogical tradition from responsive evaluation (Abma 2005a, b; Abma and Widdershoven 2005, 2006; Guba
and Lincoln 1987; Stake 1975, 2004; Widdershoven 2001). Central elements to this tradition are a variety of different perspectives, narratives,
storytelling, relationality, interactivity, ongoing dialogues and mutual understanding. Recently, art has become an element in our approach, inspired by
performative social science (Gergen and Gergen 2016) with the purpose of performing social transformation. The goals of our PHR approach are the
mutual sharing of power, social change and learning and encouraging all stakeholders to extend their horizon by appropriating new perspectives
(Abma and Stake 2001; Widdershoven 2001). We see a need for a relational empowerment (Vander Plaat 1999) based on the acknowledgement that
people exist in relation to each other and are empowered in that context.
Our dialogical approach to PHR has three different phases. It starts by collecting experiences of those whose life (or work) is the subject of the study.
We collect the experiences together with people whose life (or work) is at stake or these people collect the experiences themselves. These experiences,
captured in stories, photography and/or other forms of art, present the complexity of human life and work and are the starting point for mutual learning
processes (Baur 2012). All data collection methods focus on individuals or homogeneous groups of stakeholders with shared interests, as a way to deal
with power imbalances (Abma 2005a, b). In this phase of collaboration, creative methods of analyses are used, for example, the collaborative creative
hermeneutical analysis method (CCHA) (Lieshout and Cardiff 2011) or participatory visual analysis methods. The aim of this phase is to deepen a
mutual understanding of the issues faced by the different groups of stakeholders in a safe and mutually encouraging environment (Abma and
Widdershoven 2005).
The second phase of the dialogical approach is the start of the ongoing dialogue between different stakeholders about the issues that matter to them. By
means of dialogue sessions (Abma et al. 2001), storytelling workshops (Abma 1998, 2003; Abma and Widdershoven 2005) and working conferences
(Oguz et al. 2015), stakeholders are encouraged to extend their horizon by appropriating new perspectives. Photographs, music or other performances
bring the lifeworld of the people who are the focus of the research literally into the room. In this phase, we are also inspired by Appreciative Inquiry
(Cooperrider and Srivastva 1987;Cooperrider et al. 2008). This ‘strength-based’ approach encourages hope and optimism and focuses on similarities,
including shared interests. It gives room for the resilience and potential of stakeholders that might otherwise be overshadowed by frustration and
difference (Baur et al. 2010). The final and ongoing phase is about collaborative action and monitoring of the outcomes of the collaborative process in
the previous phases.
Stories from theField
Here we illustrate our approach in two research projects with older people of different age groups and generations. Needs and aspirations for being
involved in research differ between generations, as we sensed in projects involving different generations. Every generation is united by memories,
historical periods, language, habits, beliefs and life lessons (Howe and Strauss 2007). Different major societal events during the formative years have a
lasting influence on the world views of the members of each generation (Diepstraten et al. 1999). The lens of generations helps to understand the
dynamics and needs for the facilitation of older people in PHR projects.
When we look at research with older people in the Netherlands, we speak about the Pre-War Generation (born 1901–1930), the Silent Generation (born
1930–1940) and the Protest Generation (born 1940–1955), also called Baby Boom Generation (Becker 1992). In this chapter we tell a story of one
project working with the Pre-War and the Silent Generations and one working predominantly with the Protest Generation. The baby boomers are
legendary for their political resistance to the ‘capitalist system’ and for embracing norms and values that accentuate freedom, democratization, equality
and political involvement. The other two generations share traditional norms and values that stress a solid work ethic, temperance, thrift and a desire
for law and order (Diepstraten et al. 1999).
A Case of Mutual Inquiry for Healthy, Tasty Meals
Fostering Dialogue in aResidential Setting: Participatory and Local
We turn to Mrs. Caring, a woman from the Silent Generation , who we met a few years ago in a PHR study with the aim to involve older people in
decision-making processes concerning their life and well-being in a nursing home(Baur & Abma, 2015). The features of this study that distinguish
PHR from other research paradigms are that the study was ‘participatory’ (conducted together with those who are the subject of the study) and ‘locally
situated’ (grounded in the reality of daily life in a specific place and time) (ICPHR 2013a). It namely concerned a small home with 129 apartments for
older people who could still live independently but who are in need of some kind of support due to frailty. We brought together a group of residents, all
from the Silent or Pre-War Generations, to set their agenda. The study was therefore ‘collectively owned’, also a distinguishing feature of PHR (ICPHR
2013a). After a series of conversations, a core action group of seven women aged 82–92 decided to work on improving meals. All had some degree of
physical limitation and suffered from illness and/or poor vision, hearing problems and decreased mobility.
AQ1
Eight meetings were held with this action group over a 7-month period. We encouraged the group to explore the problems they had identified. In later
gatherings, the group was encouraged to look for solutions by inviting them to make a collage and a series of photographs to show their dreams and
wishes. It was at this stage that the participants came up with a name for themselves: the Taste Buddies. A meeting was set up for the entire resident
community in order to establish whether the other residents shared the same concerns and solutions. We also organized homogeneous meetings with
kitchen staff and with the restaurant staff who served the meals.
In the next stage, dialogue meetings with heterogeneous groups were held. First, the action group met with the team leader and local manager to
discuss their experiences with the meals and to explore where there might be room for improvement. Later, the Taste Buddies met with team leaders,
kitchen staff, restaurant staff, the local manager and a resident council member to discuss their ideas for improvement. A collage helped the Taste
Buddies to present the plans for improvement.
Transformation Through Human Agency Amongst the Older Women
Initially the Taste Buddies discussed a broad set of subjects for improvement, including not feeling at home, not being able to go out, feeling
dependent and experiences of loss and grief. One theme stood out as particularly meaningful for them: the dissatisfaction over the meals. This issue
was not high on the local manager’s list of priorities; he was more concerned with care-related topics.
Originally, the interaction in the group consisted of a careful exploration of shared experiences about meals, downplaying anything negative. After a
while, the group began to feel more comfortable with each other and felt empowered by discovering that their discontent about meals was mutual.
However, sharing negative experiences resulted in stagnation. The colourful collage the group made together put an end to this negativism and the
associated downward spiral since they had to envision the ideal situation in which anything was possible. There was a renewed sense of joy and hope.
The Taste Buddies began to express an activist attitude and was more future-oriented. The group had jointly learned in a very natural way, with help of
the academic researcher as facilitator, how to transform their discontent into constructive advice for improvements in their quality of life. In terms of
PHR, we call this feature ‘transformation through human agency’ (ICPHR 2013a).
Collage and Photographs on Dreams and Wishes
Over time, the women developed into a cohesive group in which they supported each other to keep going. Whenever one of them expressed doubt
about the feasibility of their dreams, the others gently motivated her to stay positive. Trust was an important aspect of their process, as they had found a
place in this group where they could speak freely about their concerns and dissatisfaction. This is reflected in the quote from Mrs. Caring when
assuring her fellow participants that criticism was acceptable in an atmosphere of mutual encouragement: ‘After all, we’re here by ourselves, we can
talk freely about this’. This relates to two ethical principles of PHR ‘mutual respect’ and ‘personal integrity’ (ICPHR 2013b).
Engaging Others, Finding Common Ground and Action
For the kitchen and restaurant staff, the project was an opportunity to share their ideas about the meals. Early in their meetings, participants were
critical and negative about developments in the organization and their own lack of influence. For example, some restaurant staff pointed out that the
kitchen staff did not appreciate their ideas for improving dinner time. An appreciative approach was used by us for these meetings: the participants
were asked to think about what could be done to make improvements and about what they could do to contribute towards the well-being of the
residents. Furthermore, we introduced the participants in these groups to the issues and ideas of the Taste Buddies. They soon realized that they shared
the same concerns and dreams. This process could be typified as ‘active learning’ : learning from each other, an ethical principle of PHR (ICPHR
2013b). At the final meeting, the Taste Buddies, kitchen staff, team leader, local manager, resident council members, volunteers and restaurant staff all
got together to share their views. They first discussed the perspectives and values of the Taste Buddies as reflected in the photos they had taken. The
other participants recognized these issues very well. For example, one of the kitchen staff said: ‘Yes, that’s something we often talk about, that the
combination [of different parts of the menu] is not always good’. The professionals came up with their own examples of these issues and discussed
their dissatisfaction about the meals. There was openness, and the result was a feeling of mutual understanding and recognition, and this led to all
participants’ arriving at agreements about practice improvements. The result is ‘collective action’ to ‘make a difference’, two ethical principles of PHR
(ICPHR 2013b).
Collaborative Action and Monitoring Changes
The next step was to create plans for actions. This was done in collaboration between management, staff and older residents. The local kitchen in the
care facility was reopened, a cook was hired, meals became more fresh and adjusted to the seasons, and the ambiance was improved.
The Taste Buddies decided to continue as a group. They monitored the changes and were not only successful in terms of the concrete actions they
implemented but also in bringing about a change in their own perceptions of self and how they were seen and named by their environment. While these
women were initially a bit shy and insecure, through a process of relational empowerment , they became more self-confident and proud. The story of
the Taste Buddies has become part of the corporate story in the larger organization (this residential care home is part of a holding of five residential
care homes), is told over and over and functions as a success story for others (staff, management) willing to change their relation with older people.
Other facilities adopted a similar strategy to engage older people and implemented local changes as well (Baur et al. 2013). The project has increased
our understanding of direct democracy.
A Case in theAge-Friendly City Amsterdam: Who Owns the Project?
Facilitating Participation in theNeighbourhood
Back to Mr. Daring, a baby boomer living independently with his wife in a suburb of Amsterdam. We met him in an Age-Friendly City
Age-Friendly City
PHR project in Amsterdam in 2016, aiming to research and improve the age-friendliness of their district. Mr. Daring worked with a group of ten older
people, aged 67–85, as co-researchers. Most of them felt part of the Baby Boom Generation, also called the Protest Generation. They all lived in the
neighbourhood of Mr. Daring. The group was mixed in terms of gender, age, ethnic background and frailty. All were still living at home and were
capable of traveling independently.
The PHR study was embedded in the World Health Organization (WHO) network of Age-Friendly Cities (World Health Organization 2007), of which
the city of Amsterdam had become a member. The key strategy of Age-Friendly Cities is to facilitate the inclusion of older persons and to enhance
participation in the community. This strategy fits the PHR approach in which ‘equality and inclusion’ is one of the seven main ethical principles of
PHR (ICPHR 2013b).
Initially, a group of 15 professionals from seven different organizations were involved at the start of the Age-Friendly City PHR study in two
neighbourhoods in Amsterdam. The occupations of these stakeholders were diverse, from academic researchers and teachers at the school for health
professionals to various representatives of the municipality and the patient organization in the city. In short, the work began with a very large
stakeholder group without any older citizen at the table from the neighbourhoods involved. Including those who are subject of the research right from
the start of a PHR study can be challenging, especially in academic-led studies (Groot and Abma 2018). Therefore, the principles of PHR as
‘participatory’, ‘inclusive’ and ‘collectively owned’ (ICPHR 2013a) were from the very first moment of the study at stake.
We (BG amongst others) were involved in the second stage of the project as facilitators of a group of older persons in one of the two neighbourhoods.
Our starting point was assembling a team of older citizens from the area as co-researchers, facilitating their research process by organizing a meeting
twice a month over the course of a year in which we coached them in their role. The group of co-researchers generated 40 stories from older, mostly
more vulnerable neighbours. The group creatively analysed the stories together and organized a validation session with the neighbours and multiple
other stakeholders from the neighbourhood to inspire collective action. The group shared their findings in several meetings in the neighbourhood with a
broad audience. During the period of working in partnership with the group, a few ethical principles of PHR such as ‘mutual respect’, ‘inclusion’ and
‘democratic participation’ were crucial to winning back the feeling of ‘collectively owned’ by the older co-researchers. This resulted in the
announcement of the group that they wanted to continue in a partnership in the neighbourhood together with other stakeholders, with success. The
project is continuing at the moment of writing.
A Change-Oriented Group: Driven by Action
Back to the start... Surprisingly, we gathered a group of co-researchers in a short period of time. All were living in the neighbourhood and were
motivated to start inquiring into the age-friendliness of their district. Compared to our previous experiences with vulnerable older people, we were
happy to find it was relatively easy to engage the co-researchers. From a historical point of view, it is understandable that baby boomers, with a lived
history of creating change and more democratic structures, are eager to participate in such local action-oriented initiatives. Compared to other older
generations, this group is the best-educated and has a history of effecting change (Haber 2009). They were raised in a period of great social and cultural
changes, such as women’s rights, the sexual revolution, flower power, the lifting of religious and socio-political barriers and putting environmental
issues on the agenda (Fortuyn 1998). Mr. Daring can be seen as an example of this action-oriented generation.
In the introductory conversations with the group of co-researchers, the passion for change and collective action (Melucci 1996) was immediately clear.
One co-researcher, for example, worked in the neighbourhood 30years prior and had started feminist groups to empower women. She was glad that
she could remain active in her neighbourhood after retirement. Another co-researcher noted that he was part of the student protests to claim a voice in
the university in the 1960s. This energy and activism was still present for him at the age of 78.
Reflecting on the recruitment of co-researchers , we were not able to engage the most vulnerable older citizens directly in the design stage of the
process, but chose to engage them via the older co-researchers who interviewed them. We felt that the more vital older people were intrinsically
motivated, emphatic and able to get the viewpoints of older people in more vulnerable positions. Both perspectives were used as input for
conversations with local policymakers.
Participation as ‘Business’
The drive of the group to make a difference resulted in a meeting with city council members responsible for elderly policy. The meeting took place
before the group had any findings. The group was eager to hear from an official that their contribution to Age Friendly Amsterdam was meaningful to
people with power to make changes. Otherwise they might stop the process. The co-researchers told the city council member that they were investing
their spare time in this initiative, wanting to hear from him if their effort would be taken seriously.
The moment after I (BG), as a facilitator, had arranged the meeting with the city council member, some stakeholders expressed wanting to benefit from
the occasion. They wanted to be involved in the meeting , organizing a big event around it, including picture-taking and giving presents to the official.
The group of co-researchers was surprised and stunned by this reaction. It looked to them like all stakeholders wanted profit from ‘their’ work and
‘their’ meeting. The group of co-researchers had initiated the meeting and therefore insisted that they were in charge of both content and process. The
co-researchers expressed their concern and unease, deciding that they did not want the meeting to be open to other stakeholders. I remember a reaction
of a co-researcher to my question if a stakeholder could take a picture of the group of elderly people together with an important official for the publicity
of their organization: ‘Well, okay, but I do not want to be used by the city council member and his neo-liberal party for election reasons’. I took this as
a warning to stay alert.
The meeting with the official had a very positive effect on the atmosphere in the group of co-researchers. They felt inspired and felt more ownership of
the project than before. Yet, I (BG) was also in contact with the range of stakeholders who had not been invited to the meeting. The photograph taken at
the meeting was sent out by someone to all stakeholders without the consent of the co-researchers. The message attached to the photograph stated:
‘Attached we are sending a picture of the meeting. You can use this for marketing and sa les purposes’. This was precisely the result which the co-
researcher quoted above had feared. The participation of the older people had become ‘business’.
As the facilitator, I (BG) was very angry because I also felt that the stakeholder organizations could take advantage of the group and I was afraid it
would affect the optimistic and productive working atmosphere. I stopped the process and asked to call back the photograph, explaining my action by
referring to the basic principles of PHR, particularly the principle of ‘ownership’ (ICPHR 2013a). This would mean obtaining the permission of all
partners regarding the dissemination of information on the project.
Lessons Learned
In the Netherlands, as in many European welfare states, participation is said to be a basic principle of public policy . Participation has been largely
instrumentalized in the Dutch setting, while at the same time there is a growing interest in PHR. PHR initiatives have to deal with a highly politicized
context. Politicians and others are eager to join in and learn from PHR projects. On the other hand, they are not used to working in partnership with
people in more vulnerable situations. Another aspect is that PHR with older people is different now than 10years ago, because the Baby Boom
Generation is eager to work together in a participatory way in order to create social change. These political circumstances call for advanced stages of
Developmental Action Logics (Torbert 2003, 2004; Torbert and Taylor 2008) from PHR facilitators. Developmental Action Logics help to interpret
surroundings, reflect, learn and react in complex, chaotic settings and to move through these categories as abilities grow (Rooke and Torbert 1998).
In the case of the Taste Buddies, the older people became co-creators, and they developed shared ownership over the course of the research project.
The residents who, like Mrs. Caring, had initially been cautious about expressing their experiences later considered it their responsibility to stand up for
the other residents. This was new for a group of women from their generation who grew up as being seen but not heard, as ‘grey-flannel conformists’,
accepting the institutional civic life and conventional culture (Howe and Strauss 2007). The sociality of the process was for them as important—or
maybe even more important—than the political drive to change life within the institution, and finding ‘a voice’ and developing ‘an agenda’ were major
achievements. This process towards mutually transforming power demonstrates that identities and relationships shifted and that the participants
developed trust, openness and mutual understanding about common values. The Taste Buddies were therefore not only successful in terms of the
concrete action they brought about but also in terms of bringing about a change in their own perceptions of self and how they were seen and
approached in their immediate environment. The facilitator’s focus was on fostering dialogue, action and empowerment, which included redefining the
role of older people and developing a new, shared vision.
The case of the Age-Friendly City group shows that the younger generation of older people, like Mr. Daring, are perhaps more politically aware and
eager to raise their voice and claim ownership. The current neo-liberal political climate promotes entrepreneurship and consumer action. This climate
heightens the competition between organizations to work together with older people in service provision. As a PHR group who volunteered in their
neighbourhood, the Age-Friendly City group wanted to take the credit for their success. Yet, as the old Dutch proverb says, success has many fathers.
Participation and PHR is a serious ‘business’ in times of reform and the Dutch ‘participation society’. Focusing on empowerment was not necessary in
a project with people mostly from the Baby Boom Generation; rather, the facilitator emphasized personal and organizational transformation in a highly
politicized context. Yet, to reach out to older people in a more vulnerable position and to include their experiences as well, the more vital elders
actively approached these neighbours through interviews and thereby gave them a voice in the neighbourhood. Participation requires sometimes other
modes of working to adjust to the needs and aspirations of various generations and personal biographies.
If we examine the required skill sets and abilities of a PHR facilitator from the Developmental Action Logics (Torbert 2003, 2004, 2013) perspective,
we see that in both initiatives the facilitator shares transformational power with the group of older people. In facilitating the dialogue with other
stakeholders in the Taste Buddies case, being a diplomat was enough (Baur and Abma 2012). The diplomat role of a facilitator promotes social
cohesion in the group and ensures that attention is paid to the interests and needs of others. In the Age-Friendly City initiative , the power of politics
and the goal of social transformation required more. Taking on the role of expert by bringing in knowledge of the principles underlying PHR was a
start. It encouraged a collective learning process on the part of the stakeholders. To promote real change and effectively handle the kind of conflicts
encountered here, a PHR facilitator needs to address the instinctive resistance of some stakeholders to change. In the case of the Age-Friendly City ,
this meant the resistance of stakeholders to sharing power. This role is called stra tegist. A facilitator who acts as a strategist is adept at helping groups
to create a shared vision that encourages both personal and organizational transformations. In the eye of a strategist, change is an iterative process that
requires close attention. The strategist masters second-order change regarding actions and agreements as well as the interplay of personal relationships,
organizational relations and national and international developments (Rooke and Torbert 2005).
These were important lessons for us, but above all we have sensed how important it is for older people, from all generations, to have a meaningful role
in determining important aspects of their lives and to connect with others.
Acknowledgements
We thank all co-researchers and other stakeholders who participated in the initiatives. We would also like to thank our co-facilitators and colleagues
Vivianne Baur, Elena Bendien and Maaike Muntinga.
References
Abma, T. A. (1998). Storytelling as inquiry in a mental hospital. Qualitative Health Research, 8(6), 821–838.
Abma, T. A. (2003). Learning by telling storytelling workshops as an organizational learning intervention. Management Learning, 34(2), 221–240.
Abma, T. A. (2005a). Responsive evaluation in health promotion: Its value for ambiguous contexts. Health Promotion International, 20(4), 391–397.
Abma, T. A. (2005b). Patient participation in health research: Research with and for people with spinal cord injuries. Qualitative Health Research,
15(10), 1310–1328.
Abma, T. A., & Broerse, J. E. (2010). Patient participation as dialogue: Setting research agendas. Health Expectations, 13(2), 160–173.
Abma, T. A., & Stake, R. E. (2001). Stake’s responsive evaluation: Core ideas and evolution. New Directions for Evaluation, 2001(92), 7–22.
Abma, T. A., & Widdershoven, G. A. (2005). Sharing stories narrative and dialogue in responsive nursing evaluation. Evaluation & the Health
Professions, 28(1), 90–109.
Abma, T. A., & Widdershoven, G. A. (2006). Responsieve methodologie: Interactief onderzoek in de praktijk. Amsterdam: Lemma.
Abma, T. A., Greene, J. C., Karlsson, O., et al. (2001). Dialogue on dialogue. Evaluation, 7(2), 164–180.
Baur, V. E. (2012). Participation & partnership: Developing the influence of older people in residentia l care homes. Doctoral dissertation, Free
University.
Baur, V., & Abma, T. (2012). ‘The Taste Buddies’: Participation and empowerment in a residential home for older people. Ageing and Society, 32(06),
1055–1078.
Baur, V. E., Abma, T. A., & Widdershoven, G. A. (2010). Participation of marginalized groups in evaluation: Mission impossible? Evaluation a nd
Progr am Pla nning, 33(3), 238–245.
Baur, V. E., Abma, T. A., Boelsma, F., & Woelders, S. (2013). Pioneering partnerships: Resident involvement from multiple perspectives. Journal of
Aging Studies, 27(4), 358–367.
Becker, H. A. (1992). Generaties en hun kansen. Amsterdam: Meulenhoff.
Bindels, J., Baur, V., Cox, K., et al. (2014). Older people as co-researchers: A collaborative journey. Ageing and Society, 34(06), 951–973.
Boog, B. (2007). Handelingsonderzoek of action research. KWALON. Tijdschrift voor Kwalitatief Onderzoek, 12(1), 13–20.
Bos, G. F. (2016). Antwoorden op andersheid: Over ontmoetingen tussen mensen met en zonder versta ndelijke beperking in omgekeerde-
integratiesettingen. Doctoral dissertation, Free University.
Caron-Flinterman, J. F. (2005). A new voice in science: Pa tient par ticipation in decision-making on biomedica l research. Doctoral dissertation, Free
University.
Cooperrider, D. L., & Srivastva, S. (1987). Appreciative inquiry in organizational life. Resea rch in Orga nizational Cha nge and Development, 1(1),
129–169.
Cooperrider, D., Whitney, D. D., & Stavros, J. M. (2008). The appreciative inquiry handbook: F or lea ders of change. Oakland: Berrett-Koehler
Publishers.
Dedding, C. (2009). Delen in mahct en onmacht, Kinderparticipatie in de (a lledaa gse) diabeteszorg. Doctoral dissertation, Free University.
Diepstraten, I., Ester, P., & Vinken, H. (1999). Talkin’bout my generation. Netherlands J ourna l of Social Sciences, 35(2), 91–109.
Elberse, J. E. (2012). Changing the health research system. P atient pa rticipa tion in health research. Doctoral dissertation, Free University.
European Commission. (2014). National reform programme 2014 the Nether lands. Brussels: European Commission.
European Commission. (2016). Stability programme of the Netherlands. Brussels: European Commission.
Fortuyn, P. (1998). Babyboomers Autobiogra fie van een gener atie. Houten: Bruna.
Fricker, M. (2013). Epistemic justice as a condition of political freedom? Synthese 190(7), 1317–1332.
Gergen, M. M., & Gergen, K. J. (2016). Playing with purpose: Adventures in performative social science. Abingdon: Routledge.
Groot, B. C. & Abma, T. A. (2018) Partnership, collaboration and power. In S. Banks & M. Brydon-Miller (2018) Ethics in pa rticipa tory research for
health and social well-being. Abingdon: Routledge.
Grootegoed, E. M. (2013). Dignity of dependence: welfare state reform and the str uggle for respect. Doctoral dissertation, University of Amsterdam.
Guba, E. G., & Lincoln, Y. S. (1987) The countenances of fourth-generation evaluation: Description, judgment, and negotiation. In The politics of
progra m evalua tion (pp. 202–234) 15
Haber, D. (2009). Gerontology: Adding an empowerment paradigm. Journa l of Applied Gerontology, 28(3), 283–297.
Howe, N., & Strauss, W. (2007). The next 20 years. Har vard Business Review, 85, 41–52.
International Collaboration for Participatory Health Research (ICPHR). (2013a). Position paper 1: Wha t is participatory health resea rch? Version:
May 2013. Berlin: International Collaboration for Participatory Health Research.
International Collaboration for Participatory Health Research (ICPHR). (2013b). Position paper 2: Pa rticipa tory health research: A guide to ethica l
principals and pr actice, Version: October 2013. Berlin: International Collaboration for Participatory Health Research.
Jacobs, G. C. (2001). De paradox van kracht en kwetsbaarheid. Empower ment in feministische hulpverlening en humanistisch raa dswerk. Doctoral
dissertation, University of Humanistic.
van Lieshout, F.. (2013). Taking action for action: A study of the inter play between contextual a nd facilitator char acteristics in developing an effective
workplace culture in a Dutch hospita l setting, through action research. Doctoral dissertation, University of Ulster.
van Lieshout, F., & Cardiff, S. (2011). Innovative ways of analysing data with practitioners as co-researchers. In D. Bridges, D. Horsfall, Higgs, et al.
(Eds.)., (2011) Creative spaces for qualitative researching (pp. 223–234). Dordrecht: Sense Publishers.
Maarse, J. H., & Jeurissen, P. P. (2016). The policy and politics of the 2015 long-term care reform in the Netherlands. Health Policy, 120(3), 241–245.
Melucci, A. (1996). Challenging codes: Collective action in the information age. New York: Cambridge University Press.
Nierse, C. J., & Abma, T. A. (2011). Developing voice and empowerment: The first step towards a broad consultation in research agenda setting.
Journal of Intellectual Disa bility Research, 55(4), 411–421.
Oguz, N. B., Gulru, Z. G., & Erme, K. (2015). Symbiosis of action research and deliberative democracy in the context of participatory constitution
making. In Bradbury (Ed.), The SAGE handbook of action research. Los Angeles: SAGE.
Rooke, D., & Torbert, W. R. (1998). Organizational transformation as a function of CEO's developmental stage. Organization Development Journa l,
16(1), 11.
Rooke, D., & Torbert, W. R. (2005). Seven transformations of leadership. Har vard Business Review, 83(4), 66–76.
Schipper, K. (2012). Patient pa rticipa tion & knowledge. Doctoral dissertation, Free University.
Snoeren, M. (2015). Wor king= lea rning. Doctoral dissertation, Free University.
Stake, R. E. (1975). To evaluate an arts program. In R. E. Stake (Ed.), Eva luating the a rts in educa tion: A responsive approach (pp. 13–31). Columbus:
Merrill.
Stake, R. E. (2004). Standards-ba sed and responsive eva luation. Thousand Oaks: Sage.
Teunissen, G.J. (2014). Values and criteria of people with a chronic illness or disa bility: Strengthening the voice of their representatives in the health
debate and the decision making process. Doctoral dissertation, Free University.
Torbert, W. R. (2003). Per sonal and organisationa l tra nsformations through action inquiry. London: The Cromwell Press.
Torbert, W. R. (2004). Action inquiry: The secret of timely a nd tra nsforming leadership. Oakland: Berrett-Koehler Publishers.
Torbert, W. R., & Taylor, S. S. (2008). Action inquiry: Interweaving multiple qualities of attention for timely action. In Reason, P., & Bradbury, H.
(Eds.). Handbook of action research: Participative inquiry and practice. Second edition. Sage: London.
Torbert, W. R. (2013). Listening into the dark: An essay testing the validity and efficacy of collaborative developmental action inquiry for describing
and encouraging transformations of self, society, and scientific inquiry. Integral Review: A Tra nsdisciplinar y & Transcultur al J ourna l for New
Thought, Resea rch, & Praxis, 9(2).
Van der Donk, C., & Van Lanen, B. (2012). Pra ktijkonderzoek in de school. Bussum: Coutinho.
Vander Plaat, M. (1999). Locating the feminist scholar: Relational empowerment and social activism. Qua litative Health Research, 9(6), 773–785.
Weerman, A. (2016). Ervaringsdeskundige zorg- en dienstver leners: Stigma, versla ving & existentiële tra nsformatie. Doctoral dissertation, Free
University.
Widdershoven, G. A. (2001). Dialogue in evaluation: A hermeneutic perspective. Evalua tion, 7(2), 253–263.
Wiles, J. L., Leibing, A., Guberman, N., et al. (2012). The meaning of “aging in place” to older people. The Gerontologist, 52(3), 357–366.
de Wit, M. P. T. (2014). Patient pa rticipa tion in rheumatology research: A four level responsive eva luation. Doctoral dissertation, Free University.
de Wit, M., Abma, T. A., & Koelewijn-van Loon, M. (2013). Involving patient research partners has a significant impact on outcomes research: A
responsive evaluation of the international OMERACT conferences. BMJ Open, 3(5), e002241.
World Health Organization. (2007). Global a ge-friendly cities: A guide. Geneva: World Health Organization.
