Why action needs compassion: Creating space for experiences of powerlessness and suffering in participatory action research

Abstract

Participatory action research is often informed by strength-based approaches such as appreciative inquiry. However, when social change and collective action appear to be difficult, feelings of powerlessness and suffering can arise. There is an ongoing debate on the place and importance of these so-called negative emotions within strength-based approaches. In a participatory action research project on citizen participation in the Netherlands we encountered a social and political context that was beyond our ability to change. We came to realize that change or action is not always possible in participatory action research and that ‘pushing’ for action can become a disempowering experience for those involved. In this article we share the moral dilemmas that we encountered and reflect on our own learning experiences as academic researchers. We argue that researchers need to anticipate upon these moral challenges by reflecting upon their personal position towards powerlessness and suffering. Nussbaum’s notion of compassion can help researchers to create space for these experiences and to acknowledge these experiences as sources of generative knowledge. Researchers should carefully navigate between fostering action and expressing compassion in participatory action research. With this article we aim to contribute to a care ethical perspective on participatory action research that acknowledges vulnerabilities and precariousness in research practices.

Keywords

Participatory action research appreciative inquiry action empowerment compassion ethics

Introduction

Fostering collective action and social change is at the heart of participatory action research (PAR) and related transformative action oriented research, such as community-based participatory research, participatory health research, action research and transformative evaluation (Mertens, 2009; Reason & Bradbury, 2008). These approaches strive for democratization of knowledge, human flourishing and social justice. These values drive the research and social change process, and include a critical awareness of unequal power relations and structures. Participatory approaches aim to ‘maximize the participation of those whose life or work is the subject of the research in all stages of the research process’ (ICPHR, 2013).

Empowerment of those involved in the research process is considered key (Jacobs, 2006). Wallerstein (1992) defined empowerment as ‘a multilevel construct that involves people assuming control and mastery over their lives in the context of their social and political environment; they gain a sense of control and purposefulness to exert power as they participate in the democratic life of their community for social change’.

Another fundamental aspect in transformative research is a strength-based approach: ‘the belief in the strength that is often overlooked in communities’ (Mertens, 2009, p. 18). Researchers who position themselves within the transformative research paradigm distance themselves from a deficit perspective that focuses on the problems in a community (2009). In doing so transformative research is closely related to appreciative inquiry (AI) (Ludema, Cooperrider, & Barrett, 2001; Zandee & Cooperrider, 2008). This strength-based or generative approach to organizational change is future oriented as it invites people to imagine ‘what could be’ by focussing on the following questions: ‘What gives life?’, ‘What are our strengths?’ and ‘Who are we at our best?’. These elements from AI are often used within PAR (Boyd & Bright, 2007; Zandee & Cooperrider, 2008).

Fostering social change and collective action are thus core values of PAR. Yet, in the messiness of daily practice, fostering collective action and social change is not always possible. Complexity theory teaches us that change is often a messy rather than a linear and orderly process, because parts and system mutually influence each other while the whole is much greater than the sum of its parts (Cook, 2009; Davis & Sumara, 2005). This is especially relevant for the social and health care sector due to its multiplicity of actors, as health and social problems are strongly intertwined and vulnerable people often deal with multiple care professionals from different care domains.

This idea that control over the process is limited became particularly urgent and morally challenging in a PAR process on citizen participation in a neighbourhood of a Dutch city with women in a marginalized position. This PAR process was conducted within a transformative (Mertens, 2009) and participatory (ICPHR, 2013) research paradigm and our approach was strongly informed by AI. During the research process it gradually became clear that our project was conducted within a disempowering social and political context that was beyond our ability to change. Fostering collective action and social change appeared to be complex and even disempowering for those involved in the research process. While we (academic researchers) were passionate to give these marginalized women a voice in the public domain and change their situation, it felt as if our attempts did not do justice to the tragic impossibilities of the situation. By focussing solely on the strengths and possibilities of these women, we unintendedly participated in a silencing act in which their powerlessness and suffering were not acknowledged. We got stuck in a paralyzing impasse and began to question whether compassion with the tragic impossibility would be a better (ethically informed) answer than ‘pushing’ for action. Our key dilemma centred around the question: How to deal with powerlessness and suffering of research participants from a strength-based approach?

Although action research is concerned with challenging the unjust social structures or practices that cause human suffering (Reason & Bradbury, 2008), dilemmas on how to deal with powerlessness and suffering of research participants exist in both PAR and AI (Bushe, 2011). Within the tradition of AI there is an ongoing debate on AI’s affinity with positive psychology and the place and importance of so-called negative emotions within a strength-based approach (Bushe, 2011). Central to this debate is the question which sources of knowledge can be valued as ‘generative’ or have ‘generative capacity’ (Zandee, 2015)?

In this article we share our learning experiences, and will argue that in PAR researchers need to anticipate upon these moral challenges by reflecting upon their personal position towards powerlessness and suffering. This reflective process can enable them to more carefully balance action and compassion within their research process. With this article we aim to contribute to a (care) ethical perspective on PAR, which is concerned with expressing care towards research participants in a way that acknowledges vulnerability and precariousness (Banks et al., 2013; Banks & Brydon-Miller, 2018; Groot et al., 2018).

Short description of our PAR project

PAR follows an iterative process of action and reflection, and practice and theory. Our PAR project followed such logic, but was not structured along the phases of analysis, planning, doing, acting and evaluation. Our prime focus was to maximize participation and to create a ‘communicative space’ (Wicks & Reason, 2009) in which all of those involved, including ourselves, felt mutually encouraged, respected, and supported to join the process. Much of our work was person-centred, relational and geared to facilitating an open and safe space to tell and share stories, building relationships of trust and handling complicated group dynamics and unplanned shifts and needs. This way of working was very much influenced by the context and the social position of the people involved.

Our PAR was established in a relatively poor and culturally diverse urban neighbourhood in The Netherlands to study and support citizen participation through collective action and reflection. The project was funded by a local elderly care organization and carried out by an all-white Dutch academic research team comprising a doctoral researcher (Duijs), a post-doctoral researcher (Baur) and a professor (Abma, also the PhD supervisor). The local elderly care organization was part of a neighbourhood platform of professional care organizations, established by the local government at the time of our research, to support citizen participation in the neighbourhood. They funded our research to express their support for this platform, but played little role in doing the research. Moreover, the organization that commissioned the study did not have much control over the processes in the neighbourhood; many other actors played a role, and the power relations were diffuse. One of the key actors was the local government. The neighbourhood where our PAR took place was chosen by this local government because of its high level of citizens receiving professional care and low level of citizen participation.

Our PAR project was part of a bigger research project on citizen participation in the neighbourhood (2013–2015). This research project was set up within a transformative (Mertens, 2009) and participatory research paradigm (ICPHR, 2013). Its aim was to responsively evaluate the multidisciplinary neighbourhood platform from multiple stakeholder perspectives. The PAR project emerged from this more comprehensive evaluation study (June 2013–May 2014; Duijs, Baur & Abma, 2014). We followed the systematic steps of a responsive evaluation for the broader study which included an exploration, consultation and integration phase (see Table 1 for an overview of phases and activities). The theoretical foundations and systematic steps of responsive evaluation are described in more detail elsewhere (Abma, 2005). Methods of data collection included observing community meetings, formal and informal interviews and homogeneous focus groups.

Table 1.

Responsive evaluation of an interdisciplinary neighbourhood platform (June 2013–May 2014).

Phase	Methods of data collection	Description	N	Period
Exploration phase(June 2013–February 2014)	Observations and field notes	Social activities of neighbourhood residents (N = 6 meetings)	N = 18 h observation	June–December 2013
		Meetings of professionals in the interdisciplinary platform (N = 5 meetings)	N = 15 h observation
		Activities organized by neighbourhood residents and professionals that were initiated by the interdisciplinary platform (n = 11)	N = 35 h observation
	Semi-structured interviews	Neighbourhood residents and active citizens in the community board	N = 15 interviews	June 2013–December 2013
		Professionals participating in the interdisciplinary platform	N = 12interviews
		Policy maker from the local government	N = 1interview
Analysis exploration phase: Analysis of themes from the observations and interviews using thematic analysis, which forms input for the homogeneous FGs.				January–February 2014
Consultation phase(March 2014–June 2014)	Homogenous focus group	Neighbourhood residents (**the PAR research project emerged from this FG)	N = 7 participants	March 2014
	Homogeneous focus group	Professionals of the interdisciplinary platform including the policy maker from the local government	N = 11 participants	May 2014
	Homogeneous focus group	Professionals from another (more care oriented) interdisciplinary platform in the neighbourhood	N = 6 participants	June 2014
Analysis consultation phase: Analysis of the themes and actionable point from the homogeneous focus groups using thematic analysis.				May 2014
Integration phase	Heterogeneous focus group	This focus group was not conducted as the local government decided to cancel the interdisciplinary platform.

During the responsive evaluation we came into contact with several women who expressed a wish to get more involved in the neighbourhood. We invited nine women to form a PAR group to share their experiences, dreams and collaboratively develop ideas and actions for social change. This PAR group was facilitated using the PARTNER approach which is a dialogical, action-oriented method to create partnership relations between diverse groups of people who work together to improve practices based on mutual understanding and collective action (Baur & Abma, 2012; Duijs, Baur & Abma, 2016). The principles and systematic steps of the PARTNER approach are also described in detail elsewhere (Baur, 2012). We chose methods for data generation that maximized participation and fitted with the communication styles of the women, including storytelling through in-depth interviews, brainstorm and dialogue sessions. An overview of the methods and data generated are presented in Table 2.

Table 2.

PAR action group of neighbourhood residents (March 2014–September 2014).

Phase	Methods	Data collected	Number	Period
Meetings of the action group (N = 6 meetings)	Participant observation of the meetings of the action group	Field notes of the researchers (junior and senior researcher)	N = 18 h observation	March–September 2014
		Ad verbatim transcripts of the meetings with the action group	N = 6 transcripts
		Reflexive journal of the junior researcher, including reflections from senior researcher	N = 48 h
Reflection with participants	Open interviews with 4 participants of the action group	Transcripts of open interviews	N = 4 transcripts	May 2014
Reflection by academic researchers	Critical creative hermeneutic analysis^a	Narrative of the action group written by first researcher (N = 12 pages)	–	August 2014
Reflection by academic researchers	Critical creative hermeneutic analysis^a	Transcript of the meeting	N = 1 transcript	August 2014

^aVan Lieshout and Cardiff (2011).

Two women resigned before the project started, but a group of five to seven women regularly met – with eight meetings between March and September 2014. These women came from diverse cultural and religious backgrounds: three were born in Turkey, two fled from Rwanda and Iraq and two were born and raised within this particular neighbourhood (one Dutch woman who spoke the local dialect and one Indonesian woman). They were aged between 35 and 60. A few had previously been active in their neighbourhood. Yet, most lived very isolated lives, some hardly spoke Dutch and several were struggling to find work. They had few local contacts.

Reflection on the process was an ongoing activity during and in between the meetings. Research participants received minutes from the meetings. Joint reflection on the process took place during the meetings and in open interviews that were conducted with participants during the research process. Due to the difficulties described in the reflections below the women refrained from participating in the meetings and collective analysis appeared to be impossible at the end of the project (September 2014). Therefore, data generated from this study were mainly analysed by the academic research team.

Levels of reflection

Within PAR we distinguish first, second and third-level reflection (Reason & Bradbury, 2008; Zandee, 2015). First level concerns a reflection on inner experiences and feelings, which can be used for a broadening of the inquiry within a social group at second level. This can also be related to third-level reflection which includes insights the broader socio-political context and structural disadvantages and injustices. Our aim was to develop a critical subjectivity: personal experiences became the subject of inquiry, reflection, and discussion. These personal issues were related to structural processes of inclusion and exclusion (third level) which helped us to understand the dynamic within our PAR project. Second-level reflection created a deeper understanding of how our own identity and biography as researchers were ‘embodied’ within the research process (Todres, 2008).

Our reflections are based on the following sources of data: (1) the reflective journals of the first author that were made during the PAR-research project (some of which were written retrospectively), (2) data from the PAR-research project such as field notes, transcripts of interviews and meetings of the PAR group, and (3) notes of meetings of the academic research team. We focus on moments in the research process that were emotionally laden, i.e. moral dilemmas, as Nussbaum (2001) argued that emotions are ‘values embodied’. Mertens (2009, p. 80) also urges researchers to ‘pay attention to … dilemmas and key phrases that are charged with energy or that seem to hold multiple meanings.’

Although participatory action researchers would ideally reflect on moral dilemmas in the research with research participants (cf. Montesano Montessori & Ponte, 2012), participant voices are lacking in our reflective process afterwards due to the issues that are described in this article. The voices of participants are embedded within the first-level reflections using quotes from the participants that were collected during the meetings of the PAR group and during interviews with participants. These quotes were the starting point of the reflexive process within the academic research team. This article focuses on the methodological dilemmas of the academic researchers who facilitated the PAR process. We believe that these reflections can be of value for fellow participatory action researchers.

Reflections

Moral dilemmas of the first researcher (first-level reflection)

As a novice participatory action researcher I (Duijs) was highly motivated to support citizen participation and democratic participation in a neighbourhood and at municipal level. Yet, I soon was confronted with several moral dilemmas. The first dilemma concerned balancing between connecting to people where they are now and imagining how it could be. The second dilemma centred around the tension between acknowledging structural inequalities while fostering collective action of the PAR group.

Balancing between connecting to people where they are now and imagining how it could be

During the responsive evaluation I met nine women who shared their concerns and ideals about this neighbourhood with me. They expressed their wish to take action. I had several informal conversations with these women and they spoke about their life to me. I was touched by their stories and invited them to be part of a PAR process. Eventually, seven of them decided to participate. The first few meetings of the group were facilitated by both me and a senior researcher (Baur). In our perspective the project started wonderfully. The women, from diverse backgrounds, quickly shared intimate experiences of loneliness, exclusion and discrimination with each other. We were touched by the women’s stories and felt as if they connected heart to heart. In the meetings that followed the woman occasionally brought up ideas to promote social contact with or informal gatherings for other woman in the neighbourhood.

After the first two or three meetings, participation in the group became complicated. Conflicting views and agendas became apparent and personal struggles concerning job employment, (transnational) family care, depression, loneliness, conflicts or language barriers greatly impacted the lives of these women and therefore the dynamic of the group. As facilitators we considered these experiences crucial to the process and hoped that the sharing of these experiences could contribute to the relational empowerment of the group (reference blinded). This would possibly foster political empowerment and collective action (Melucci, 1996). Yet, this turned out to be more complex than we thought.

After several meetings we (Duijs, Baur) still felt that there was a lack of focus, confidence and shared responsibility to actually take action. We both felt as if we arrived at a dead end in the process. In preparation of the next meeting we hoped that the women could define a common dream and decide on an agenda for action. Together with the supervisor (Abma) we decided to take on an appreciative approach, bearing the words of Mertens (2009) in mind: ‘One of the major principles underlying transformative research and evaluation is the belief in the strength that is often overlooked in communities’ (p. 18). We decided to focus on the strengths and possibilities of this group of women, inviting them to think of ‘How it could be’ (Ludema et al., 2001), hoping this could breathe new life into the group.

Yet, at the end of this meeting we (Duijs, Baur) were both feeling exhausted. Travelling back from the meeting I suddenly remembered a specific moment in the meeting which made my heart sink. One of the women shared her desire for encounters and informal gatherings with other women. We asked her, bearing in mind the role of the appreciative inquirer: ‘What does your dream look like? What is the first step you can take to make this dream possible? What possibilities are already in your reach?’ But while we started asking these and other questions she bow her head and remained quiet. Another woman quietly said: ‘We don’t know anyone around here.’ One of the other women referred to her neighbours when she noticed: ‘No one is ever here, they are always at work or busy doing other things.’ We continued to press for possibilities: ‘Okay, so they are away for the day. What else could you do? You could approach them in the evening? Or focus on the people who are at home during the day?’ Again, the women shared their frustrations and doubts. This time more forcefully: ‘Listen, we don’t even know their language.’ Some of the women expressed shame toward their neighbours and referred to their cultural background and inability to speak the language: ‘I cannot imagine myself … going up there ringing their doorbell? What will they think of me?’ The harder we tried to uncover ‘hidden strengths’ (Mertens, 2009) or invite them to ‘imagine how it could be’ (Ludema et al., 2001) the more the women started to express their frustration and powerlessness. They did not see any possibilities to connect with the neighbourhood residents and I even sensed that they felt ashamed in even considering trying to reach out.

A short while after the meeting we shared our disillusionment about the meeting with each other. What did we do wrong? In a way this situation made me feel uncertain about my role as a novice PAR researcher: was I getting this AI thing right? Did I just need to study it more, practice it more often and learn how to ask better questions? Of course, that might have been the case. But that was not the question that was confusing me most. Mostly, I looked back with a sense of sadness about this meeting: as if the connection between me and the women was lost. Although the group dynamic wasn’t easy, I had interviewed all of these women separately and we often had spoken informally about their lives, dreams and worries. I felt a strong connection with these women and I was touched by the stories they told me and the struggles they faced in their daily live. I felt as if we were able to connect on an intimate level as they shared their hardships, pain or loneliness. Some of this connection was tangible during the first few meetings, in which the women shared bits and pieces of their stories. During this last meeting I felt as if there was no room for these stories anymore and we somehow compromised our relationship by mainly focussing on the strengths, rational solutions and possibilities for getting from a to b in a linear fashion. Yet, I also acknowledged that at this moment in the process merely sharing stories was not enough to foster confidence in their own ability to make a change (personal and relational empowerment) and to encourage collective action (political empowerment).

It felt as if I had to balance between connecting to the participants where they were now and invite them to ‘imagine how it could be’ as a strategy to foster change. What would have been the right thing for me to do as a PAR researcher during this meeting? Persist in taking on an appreciative approach that could foster collective action and change, while feeling as if I was ignoring the pain and struggles that form their daily reality? Would I, by doing so, participate in a silencing act in which their lived experiences of pain and struggle were denied? Or should I settle for creating space in which their stories could be shared as they are, not as they should be, and in which I could express my compassion with their pain and struggles, with the risk of never getting anything done? I felt as if I had to navigate between fostering action and expressing compassion and I wondered: ‘Can I, and if so how, take on a strength-based approach, while also acknowledging pain and suffering?’

Acknowledging structural inequalities while fostering collective action of the action group

At the same time the women also expressed little confidence in their ability to make a change on their own and shared their need for financial, moral and practical support. They decided to invite a policy maker from the local government. As a facilitator I encouraged this course of action. Maybe this could shake things up? The policy maker, who had previously expressed his enthusiasm for our project, accepted the invitation.

During the introductions the women immediately started to express their vulnerabilities and were explicitly searching for a helping hand. One of the women referred to her inability to make contact due to language problems. Others mentioned their unemployment and their search for work. They mentioned the barriers they experienced to organize community activities by themselves. These barriers were financial as most of these women were living on social security or had irregular, insecure work. Others also mentioned their inability to organize activities as they were struggling with depressions. One of the women concluded by saying: ‘Yes, I love it. But we also know that we can’t do it alone. We need help from someone.’ Then the women introduced the key issue they wanted to address: their wish to organize activities in their neighbourhood, and the hampering issue of the high rent to use the local community building. The policy maker immediately responded by defending governmental policy. Current policy focussed on self-management of community houses, in which the municipality ‘only rented the place’ (quote policy maker) and neighbourhood citizens were responsible for developing social activities in these community houses.

The women attempted to create a dialogue about this governmental policy on self-management of community houses from their perspective, but this appeared to be difficult. The policy maker persisted in explaining the rationale behind the governmental policies and he consistently told the group that they should be inventive and look for possibilities themselves, without asking for governmental support. This kind of response did not match with the needs of the group, and the women became more and more defensive. After the local policy maker had left the meeting, the women expressed disappointment: ‘I actually find that he didn’t really listen to us by saying all these things.’ They felt as if they were no further than were they were before and, moreover, as if they were left on their own. Yet some of them seemed to be able to stay positive: ‘Like he says, no one will help me. I don’t like it, but still, I have a good feeling, a positive feeling. We should work together.’

I was frustrated: how could it be that there was so little room for dialogue? Here we had five (two did not attend this meeting because of other care or work related responsibilities) women who responded to the ‘affective appeal’ (Verhoeven & Tonkens, 2013) of policy makers to organize activities for other (vulnerable) citizens in their neighbourhood and yet their voices and concerns were granted little attention. Both me and the women understood that governmental finances were limited, but I was rather frustrated that even within these limits there seemed to be so little room for dialogue. There was hardly room for democratic participation and shared decision making on the level of the municipal thus possibilities for organizational empowerment appeared to be limited. Not long after this meeting the women refrained from participation in our PAR process. They felt disappointed and disempowered by the research process. One of the women concluded: ‘It is just too much stress. I already have too much stress in my head.’ Another woman decided that she had to ‘prioritize taking care of my family over taking care of my neighbourhood.’

At the start of this research project I thought we (i.e. first author and the policy makers and professionals I spoke to at the start of this project) all had the same ideals in mind: supporting the voice, participation and empowerment of vulnerable citizens. Then why did I feel as if we were miles apart? Later on I realised that my position towards these women had shifted during this project. At first I took on the same position as the policy makers, trying to foster empowerment and citizen participation in the neighbourhood through our PAR project. Yet, I realized that my role shifted gradually toward advocacy on behalf of these women and focussing on political empowerment. When I look back at this moment in our research I’m fascinated that both me and the policy makers actually did the same thing: we, unintentionally, denied the structural inabilities these women experienced by adopting an appreciative approach in which we mainly focussed on whatever possibilities they could create for themselves.

I realised that our academic research team also focussed on hidden strengths as a way to enable personal empowerment and collective action. By doing so, we failed to pay sufficient attention to the structural mechanisms of exclusion and disempowerment the women faced in daily life, as their responses pointed out to us. Solely focussing on strengths clearly did not create the new openings that we hoped for. Pushing for collective action seemed to confront the group of women even stronger with the structural mechanisms of exclusion and marginalization (such as unemployment, gender, discrimination) that were beyond their ability to address. By focussing on individual responsibilities rather than on structural inequalities, we did not foster collective action but rather confronted them with their own vulnerability which even led to shame.

Exploring the broader context of our PAR process (third-level reflection)

We turned to theories of empowerment from care ethics, community psychology and critical sociology to better understand this dynamic. Several scholars have criticized the notion that empowerment can be situated at the level of the individual (Jacobs, 2006; Van Regenmortel, 2009). Focussing on personal empowerment without addressing structural mechanisms of exclusion or oppression (political empowerment) bears the danger of individualizing structural problems and so contribute to blaming the victim. This dynamic can also be seen in the responses of the women. Their shame can be explained by their experience of unemployment, exclusion, loneliness or depression as a personal failure, especially in a meritocratic society where one is believed to be responsible for one’s success, and thus also failure. Jacobs (2006) and Van Regenmortel (2009) therefore have argued that striving for personal empowerment in a disempowering context can become a disempowering experience for those involved.

I began to understand that our project indeed took place in a disempowering context. This insight was further supported by other scholars who studied the recent developments in social policy on citizen participation. They described how the recent welfare retrenchment was framed by a strong top-down policy discourse on active citizenship and citizen participation in the neighbourhood as alternative to governmental welfare regime (Verhoeven & Tonkens, 2013). Local policy measures were aimed at the participation of citizens in their neighbourhood, but did not grant citizens voice or co-determination in the creation or execution of these local policy measures. These policy measures were beyond negotiation, as became apparent in the meeting with the local policy maker. Tonkens (2016) therefore pointed towards the ‘democratic deficit’ of this policy transition. Other scholars criticized the governmental discourse of co-creation as a technique to exercise power by local governments (Grootegoed, Van Barneveld, & Duyvendak, 2015). Citizens are allowed to have a voice, but only within the margins that are top-down determined.

Moral dilemmas of the first researcher (first-level reflection)

So, if there was no room for the voice of these women within the given political context, should I keep on motivating the participants to be part of our project that was – one could say: against all odds – aimed at organizational or political empowerment and collective action of these women? To what degree was it my responsibility to protect these women for participating in a project which appeared to become a rather disempowering enterprise? Again, I felt as if I had to navigate between action (i.e. continue to work for collective action and political empowerment) and compassion (i.e. acknowledging the impossibility for political empowerment and thus the reality of exclusion). Could I express my compassion, with the danger of thereby contributing to the disempowering context? Could I give up hope? Or should I, as a strength-based researcher, hold on to ‘the belief in the strength that is often overlooked in communities?’ In summary, can we, and if so how, as participatory action researchers foster collective action in a disempowering research context?

Embodied knowledge (second-level reflection)

Exploring these moral dilemmas led to a new layer of reflection within the research team. We all felt some unease with the moral dilemmas as we felt as if we had created a dichotomy between fostering action and expressing compassion. This unease led us to probe further into our biographies and how these were embodied through our roles within the research process.

(Baur): I wonder what framed our roles and experiences? I realize that, at that time, I was strongly influenced by the skills and experiences I had gained from recently being trained as a professional Consciousness Coach™. Also, in prior research projects during my PhD research, I had experienced that the appreciative approach that I took led to beautiful results of relational empowerment and collective action of residents of elderly care organizations. I was thus very optimistic about the possibilities of participative research projects and, as a life coach, my focus lay on the potential of people to create new possibilities. This is also how I dealt with my own emotions: instead of compassionately “being with” my own feelings of unease, sadness, anger, disappointment, I would rather look for ways to transform them into something “positive.”

(Duijs): My father died when I was young. The grieve that I observed growing up made me realize that there is suffering that you cannot undo. Yet, that there is beauty and love in being able to share this grieve with one another. And, on the other hand: not being able to share this pain is an utterly lonely experience. The people in my life to whom I feel connected the most, are the ones that understand this sense of intimacy in the midst of pain and suffering. At the time of this research project I was, among others, inspired by care ethics that emphasises vulnerability and interconnectedness of human beings and Christian spirituality of vulnerability and presence. This strongly guided the way I looked at the dynamic and how I related to the women in our group.

As researchers we represented two seemingly contradictory movements within our research team in how we positioned ourselves in relation to powerlessness and suffering: almost like the two extremes of a scale.

Concluding remarks

Exploring the moral boundaries of striving for change

While fostering collective action and social change is key to PAR, our project showed that this is not always possible when a project is conducted in a disempowering social and political context. Solely focussing on action and change in this context can even be unethical, as it can lead to silencing acts in which powerlessness and suffering are denied and structural problems are individualized (i.e. blaming the victim). When participants in a PAR project experience powerlessness and a lack of hope, to focus solely on ‘hidden strengths’ (Mertens, 2009) and inviting participants to ‘imagine what could be’ (Ludema et al., 2001) does not always seem to be the right response. In this article we reflected on how we navigated between fostering action and change and expressing our compassion about the experiences of powerlessness and suffering that appeared to be beyond our control. Yet, acknowledging this powerlessness, suffering and disempowerment is not easily done in a research culture that focuses on the strengths, action and change. It is thus critical that we create spaces to reflect on the moral boundaries of fostering action and social change and acknowledge that change is not always makeable within transformative research and AI. With this plea we place ourselves in line with other PAR scholars who have described the complexity (Davis & Sumara, 2005) and messiness (Cook, 2009) of action research. We aim to contribute to a more (care) ethical research practice by making the dilemmas that derive from this complexity and messiness visible.

Compassion in PAR

When working toward an inclusive and sustainable world for all, action researchers should be very careful not to reproduce societal dynamics of inclusion and exclusion within their research practice. We argue that the notion of compassion could contribute to a more ethical and inclusive research practice by creating space to share stories of powerlessness and suffering (of all participants, including academic researchers). The notion of compassion has a central place within a (relational) care ethical perspective (Olsman, Willems, & Leget, 2016) that acknowledges the interrelatedness, vulnerability and precariousness of those in a marginalized position (Banks et al., 2013; Leget, van Nistelrooij, & Visse, 2019; van Heijst, 2005). Care ethics provides a critique on the neo-liberal discourse of self-sufficiency and self-determination that dominated in the political context of our PAR process (Leget et al., 2019; Vosman & Niemeijer, 2017). Nussbaum (2001) defined the ethical concept of compassion as ‘a painful emotion occasioned by the awareness of another person’s undeserved misfortune’ (p. 306). According to her, compassion is thus the acknowledgement of the suffering, vulnerability and dignity of people through the judgement of undeserved suffering: ‘this person did not bring the suffering on himself or herself’ (p. 321). Compassion helps to see the structural mechanisms that could lead to suffering. It also acknowledges that there are vulnerabilities, suffering and structural mechanisms that cannot be easily undone. PAR and related transformative research practices could also benefit from researchers fully acknowledging pain and suffering (their own and that of others involved) through Nussbaum’s understanding of compassion.

Carefully navigating compassion and action

Yet, in describing our moral dilemmas in this research, we felt as if we created a false dichotomy between fostering action and expressing compassion. Through our reflections we were able to move beyond this dichotomy, which actually aligns with debates within the field of AI. In recent years, AI scholars have argued against these polarities and urged other scholars to avoid simplistic notions of positive and negative (Bushe, 2011; Zandee & Cooperrider, 2008). The dichotomy we created and embodied as we described in the second-level reflection is thus exemplary for this debate. The importance of moving beyond this dichotomy is increasingly emphasized within the field of AI, as has always been the intent of Cooperrider and Srivastava (1987). Our reflections very much resonate with the following quote from Coopperrider, one of the founding fathers of AI: ‘The more I move towards AI, the more I personally feel a need to also face the ugly. And yes, then I do embrace the appreciative stance’ (Coopperrider, 1997 in Zandee, 2017). A central notion within AI is ‘generativity’ (Zandee, 2015). In this PAR process we came to understand that pain and suffering, when heard and acknowledged by others, can also be important sources of generative knowledge.

Actionable points

In retrospective we have formulated several learning point from this research. First, unconditional support for the outcomes of a PAR process from those in power is of utmost importance to avoid a PAR process to become set up to fail. Yet, it is important to note that this is fairly complicated in a bottom-up process in a context with many stakeholders. It is not always possible to identify strategic partners before setting out the PAR process as the important themes and dreams of those involved are still to be explored.

Secondly, as PAR processes are messy, complex and above all relational, PAR facilitators have a responsibility to take care of the participants within their research (Groot et al., 2018). Being able to attend to the emotions that arise within a PAR process, both negative and positive, might not always lead to action, but is crucial to attain ‘epistemic justice’ within the research process (Fricker, 2007). Epistemic injustice refers to a situation in which someone is wronged in their capability as a reliable knower. Acknowledging the value and truth of the full story of those involved in the research process (i.e. epistemic justice) is therefore the counterpart of a silencing act, in which parts of one’s experience are silenced, which is an unethical exhortation of power.

Thirdly, reflection of PAR facilitators concerning their position towards powerlessness and suffering before setting out and during their research is essential to create a more (care) ethical research process. We conclude that when hope for change is diminished and experiences of suffering and hopelessness are expressed by individuals, professionals, such as PAR facilitators, need to create space and sensitivity to carefully balance action and compassion. In order to do so, space is needed for PAR facilitators themselves as well, to share and reflect on their own emotions and moral intuitions concerning suffering and feelings of powerlessness.

Footnotes

Authors' note

Data from our study can be accessed on request to the authors.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Mosae Zorggroep in Maastricht.

Author biographies

Saskia E Duijs, MSc (1986) researches and teaches at the Department of Medical Humanities at the VU University Medical Centre and Amsterdam Public Health Institute. She has conducted several participatory health research projects with diverse client and professional groups (neighbourhood citizens, clients with a psychiatric vulnerability, elderly, informal carers and paid care workers). She is currently conducting her participatory PhD research into the experiences of paid care workers, volunteers and informal carers in elderly care from a critical gender and intersectional perspective.

Vivianne E Baur works as an Assistant Professor at the Department of Care Ethics at the University for Humanistic Studies in Utrecht, the Netherlands. Her research work in care institutions is based in a transformative research paradigm, using Participatory Action Research and Responsive Evaluation methodology to create dialogue, mutual understanding and improve caring practices. Until 2015 she worked as a senior researcher at the department of Medical Humanities. where she completed her PhD thesis on ‘Participation and Partnership: developing the influence of older people in residential care homes’.

Tineke A Abma, MSc, PhD (1964) is Full Professor ‘Participation & Diversity’ and Co-Head of the Department of Medical Humanities, at the VU University Medical Centre and Amsterdam Public Health institute. In 2010, she was appointed as an Endowed Chair in the field of ‘Client participation in Elderly care.’ She published 20 Action Research 0(0) extensively in the fields of evaluation and qualitative research, patient participation and ethics. Elderly care, chronic care, disability studies and psychiatry are her main practice fields. Her work has been awarded for its social value impact. She is an active member of the International Collaboration for Participatory Health Research (ICPHR). New books include ‘Evaluation for a Caring Society’ (JAI Press, Charlotte, US) and ‘Participatory Research for Health and Social WellBeing’ (Springer, The Netherlands).

References

Abma, T. A. (2005). Responsive evaluation: Its meaning and special contribution to health promotion. Evaluationand program planning, 28(3), 279–289.

Banks

Armstrong

Carter

Graham

Hayward

Henry

, … Moore

(2013). Everyday ethics in community-based participatory research. Contemporary Social Science, 8(3), 263–277.

Banks

Brydon-Miller

(2018). Ethics in participatory research for health and social wellbeing: Cases and commentaries. Abingdon, UK: Routledge

Baur, V. E. (2012). Participation & partnership: Developing the influence of older people in residential care homes (Doctoral Dissertation). HertogenboschVianen, The Netherlands: Uitgeverij BOXPress.

Baur, V., & Abma, T. (2012). ‘The Taste Buddies’: participation and empowerment ina residential home for older people. Ageing & Society, 32(6), 1055–1078.

Boyd

N. M.

Bright

D. S.

(2007). Appreciative inquiry as a mode of action research for community psychology. Journal of Community Psychology, 35(8), 1019–1036.

Bushe

G. R.

(2011). Appreciative inquiry: Theory and critique. In D. Boje, B. Burnes & J. Hassard (Eds.), The Routledge companion to organizational change (pp. 87–103). Oxford, UK: Routledge.

Cook

(2009). The purpose of mess in action research: Building rigour though a messy turn. Educational Action Research, 17(2), 277–291.

Cooperrider

D. L.

Srivastava

(1987). Appreciative inquiry in organizational life. Research in Organizational Change and Development, 1, 129–169.

10.

Davis

Sumara

D. J.

(2005). Complexity science and educational action research: Towards a pragmatics of transformation. Educational Action Research, 13(3), 453–464.

11.

Duijs, S.E., Baur, V.E., Abma, T.A. (2014). Eindrapportage Responsieve Evaluatie Wijkkracht. Mosae Zorggroep: Maastricht, VU Medisch Centrum: Amsterdam.

12.

Duijs, S.E., Baur, V.E., Abma, T.A.(2016). Eindrapportage PARTNER in de wijk. Mosae Zorggroep: Maastricht, VU Medisch Centrum: Amsterdam.

13.

Fricker

(2007). Epistemic injustice: Power and the ethics of knowing. Oxford: Oxford University Press.

14.

Groot

B. C.

Vink

Haveman

Huberts

Schout

Abma

T. A.

(2018). Ethics of care in participatory health research: Mutual responsibility in collaboration with co-researchers. Educational Action Research, 27(2), 1–17.

15.

Grootegoed

Van Barneveld

Duyvendak

J. W.

(2015). What is customary about customary care? How Dutch welfare policy defines what citizens have to consider ‘normal’ care at home. Critical Social Policy, 35(1), 110–131.

16.

International Collaboration for Participatory Health Research (ICPHR). (2013). Position paper 1: What is participatory health research? Version: May 2013. Berlin, Germany: International Collaboration for Participatory Health Research.

17.

Jacobs

(2006). Imagining the flowers, but working the rich and heavy clay: Participation and empowerment in action research for health. Educational Action Research, 14(4), 569–581.

18.

Leget

van Nistelrooij

Visse

(2019). Beyond demarcation: Care ethics as an interdisciplinary field of inquiry. Nursing Ethics, 26(1), 17–25. DOI: 10.1177/0969733017707008

19.

Ludema

J. D.

Cooperrider

D. L.

Barrett

F. J.

(2001). Appreciative inquiry: The power of the unconditional positive question. In P. Reason & H. Bradbury (Eds.), Handbook of action research (pp. 189–199). London, UK: Sage.

20.

Mertens

D. M.

(2009). Transformative research and evaluation. New York, NY: Guilford Press.

21.

Melucci

(1996). Challenging codes: Collective action in the information age. Cambridge, UK: Cambridge University Press.

22.

Montesano Montessori

Ponte

(2012). Researching classroom communications and relations in the light of social justice. Educational Action Research, 20(2), 251–266.

23.

Reason

Bradbury

(2008). The Sage handbook of action research participative inquiry and practice. London, UK: Sage.

24.

Nussbaum

M. C.

(2001). Upheavals of thought: The intelligence of emotions. Cambridge, UK: Cambridge University Press.

25.

Olsman

Willems

Leget

(2016). Solicitude: Balancing compassion and empowerment in a relational ethics of hope – An empirical-ethical study in palliative care. Medicine, Health Care and Philosophy, 19(1), 11–20.

26.

Tonkens

E. H.

(2016). Het democratisch tekort van de decentralisaties. In De decentralisaties in het sociaal domein: wie houdt er niet van kakelbont? Essays over relatie tussen burger en bestuur (Essaybundel) (pp. 61–77). Den Haag, the Netherlands: Transitiecommissie Sociaal Domein.

27.

Todres

(2008). Being with that: The relevance of embodied understanding for practice. Qualitative Health Research, 18(11), 1566–1573.

28.

Van Heijst

J. E. J. M.

(2005). Menslievende Zorg: een ethische kijk op professionaliteit. Kampen, the Netherlands: Uitgeverij Klement.

29.

Van Lieshout

Cardiff

(2011). Innovative ways of analysing data with practitioners as co-researchers. In J. Higgs, A. Titchen, D. Horsfall & D. Bridges (Eds.), Creative spaces for qualitative researching (pp. 223–234). Rotterdam, the Netherlands: Sense Publishers.

30.

Van Regenmortel

(2009). Empowerment als uitdagend kader voor sociale inclusie en moderne zorg. Journal of Social Intervention: Theory and Practice, 18(4), 22–42.

31.

Verhoeven

Tonkens

(2013). Talking active citizenship: Framing welfare state reform in England and the Netherlands. Social Policy and Society, 12(3), 415–426.

32.

Vosman

Niemeijer

(2017). Rethinking critical reflection on care: Late modern uncertainty and the implications for care ethics. Medicine, Health Care and Philosophy, 20(4), 465–476.

33.

Wallerstein

(1992). Powerlessness, empowerment, and health: Implications for health promotion programs. American Journal of Health Promotion, 6(3), 197–205.

34.

Wicks

P. G.

Reason

(2009).Initiating action research: Challenges and paradoxes of opening communicative space. Action Research, 7(3), 243-262.

35.

Zandee

D. P.

(2015). Appreciative inquiry research review & notes. AI Practitioner, 17(1).

36.

Zandee

D. P.

Cooperrider

D. L.

(2008). Appreciable worlds, inspired inquiry. In P. Reason & H. Bradbury (Eds.), The Sage handbook of action research: Participative inquiry and practice (2nd ed., pp. 190–197). London, UK: Sage Publications.

37.

Zandee

D. P.

(2017). Critical appreciation in action research. Key note lecture. In 7th international annual AR colloquium. Action Research Group Ireland, Dublin, Ireland, 29 June 2017.