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Working together as scientific and experiential experts: how do current ethical PAR-principles work in a research team with young adults with Developmental Language Disorder?



Participatory Action Research (PAR) brings unique ethical challenges. Scholars have developed seven ethical principles to address these challenges. So far, little has been published on how these ethical principles (are put to) work in different fields. We used the principles to evaluate our collaboration with co-researchers with developmental language disorder (DLD). This article aims to explore how the principles helped to reflect on the ongoing research practice. First, we needed to simplify the language of the principles so that the co-researchers could understand how they relate to concrete practices. Second, the co-researchers needed to be reminded of specific events before they could relate the principles to their own experiences. Lastly, for an evaluation of (co-) researchers dealing with multiple roles, from friend to colleague and client, this theme has been specifically included to the principle of personal integrity, so that it cannot be overlooked. Looking through a care ethical lens, we suggest speaking of practical insights rather than (ethical) principles, as it more clearly communicates that these insights are based on learning by doing and are not fixed, but build on (good) practices, whilst still allowing enough room for adjustments to the particularities inherent to each research process.
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Educational Action Research
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Working together as scientific and experiential
experts: how do current ethical PAR-principles
work in a research team with young adults with
Developmental Language Disorder?
Karijn Aussems, Jet Isarin, Alistair Niemeijer & Christine Dedding
To cite this article: Karijn Aussems, Jet Isarin, Alistair Niemeijer & Christine Dedding (2022):
Working together as scientific and experiential experts: how do current ethical PAR-principles work
in a research team with young adults with Developmental Language Disorder?, Educational Action
Research, DOI: 10.1080/09650792.2022.2130386
To link to this article:
© 2022 The Author(s). Published by Informa
UK Limited, trading as Taylor & Francis
Published online: 06 Oct 2022.
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Working together as scientic and experiential experts: how
do current ethical PAR-principles work in a research team
with young adults with Developmental Language Disorder?
Karijn Aussems
, Jet Isarin
, Alistair Niemeijer
and Christine Dedding
Academy, Royal Dutch Kentalis, Utrecht, the Netherlands;
Department of Ethics, Law and Humanities,
Amsterdam UMC (Location VUmc), Amsterdam, the Netherlands;
Care Ethics, University of Humanistic
Studies, Utrecht, The Netherlands
Participatory Action Research (PAR) brings unique ethical chal-
lenges. Scholars have developed seven ethical principles to address
these challenges. So far, little has been published on how these
ethical principles (are put to) work in dierent elds. We used the
principles to evaluate our collaboration with co-researchers with
developmental language disorder (DLD). This article aims to explore
how the principles helped to reect on the ongoing research
practice. First, we needed to simplify the language of the principles
so that the co-researchers could understand how they relate to
concrete practices. Second, the co-researchers needed to be
reminded of specic events before they could relate the principles
to their own experiences. Lastly, for an evaluation of (co-) research-
ers dealing with multiple roles, from friend to colleague and client,
this theme has been specically included to the principle of perso-
nal integrity, so that it cannot be overlooked. Looking through
a care ethical lens, we suggest speaking of practical insights rather
than (ethical) principles, as it more clearly communicates that these
insights are based on learning by doing and are not xed, but build
on (good) practices, whilst still allowing enough room for adjust-
ments to the particularities inherent to each research process.
Received 6 April 2022
Accepted 13 June 2022
PAR; process evaluation;
ethical principles; practical
insights; developmental
language disorder (DLD)
Participatory action research (PAR) is rapidly growing in popularity worldwide. This
popularity is both bottom-up (nothing about us without us) and top-down: funders, policy-
makers and research organizations increasingly expect a participatory approach for more
eectiveness, credibility, and eciency (Boylan, 2019). Action researchers aim to under-
stand as well as improve practices with the people it concerns (Greenwood and Levin
1998; Reason and Bradbury 2008; Bradbury 2015). Instead of studying people as subjects
to establish ‘the truth’, the participatory researcher respectfully steps into their lives and
perceives reality as ‘the way in which the people involved with facts perceive them’ (Freire
1982; ICPHR, 2013). The researcher facilitates a mutual learning process through
CONTACT Karijn Aussems
This article has been corrected with minor changes. These changes do not impact the academic content of the article.
© 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License
(, which permits non-commercial re-use, distribution, and reproduction in any med-
ium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.
exchanging and changing perspectives with the participants, and together with partici-
pants bring about change by acting upon perceived needs and individual competencies
(Orne and Bell 2015; Gibbs et al. 2018; Dedding et al. 2022).
This PAR-process – often messy, unpredictable and emergent raises various unique
ethical issues (Banks and Brydon-Miller 2019, xx). For example, conicts on who represents
a group or community and who takes credits for ndings (see Table 1 for an elaboration).
Common ethical guidelines, such as the Declaration of Helsinki (World Medical
Association, 1964, 2013) and the Belmond Report (National Commission for the
Protection of Human Subjects of Biomedical and Behavioral Research, 1979), do not
cover these specic ethical issues. Moreover, they have been criticized by PAR researchers
for creating a top-down approach of power and expertise, including a clearly dened
distinction between the researcher and researched. This does not t well in the idea of
mutual learning and exchanging and changing perspectives in PAR, where the bound-
aries between researchers and researched can be blurred (Abma et al. 2019; Banks and
Brydon-Miller 2019).
Since the common ethical guidelines were dicult to use in PAR-practices, Banks et al.
(2013) decided to develop an alternative bottom-up ethical framework for more profound
critical reection of the realities and values of participatory research. Their framework is
intended to enhance the awareness and understanding of the complexity of participatory
research, the ability to tackle ethical challenges, and to encourage funders, academic and
other institutions to modify some of their existing values, requirements and ways of
Table 1. The six main ethical issues in participatory research, followed by the seven ethical principles
as defined by Banks et al. (2013) and summarized by Banks et al. (2019).
The six ethical issues
1 Partnership, collaboration, and power Tackling mismatches between timelines and expectations
2 Blurring the boundaries between researcher
and researched, academic and activist
Tensions may arise for people who find themselves in roles of both
researcher and community advocate, or academic and activist
3 Community Rights, conflict, and democratic
Conflict within and between communities and groups, deciding
who represents group or community interest
4 Ownership and dissemination of data, findings
and publications
Conflicts of interest regarding who takes credit for findings and
what channels are used for dissemination
5 Anonymity, privacy, and confidentiality Some participants may wish to be named and credited, others may
6 Institutional ethical review processes The difficulty of fitting PR into the process and procedures for
institutional ethical review
The seven ethical principles
1 Mutual respect Developing research relationships based on mutual respect
2 Equality and inclusion Encouraging and enabling people from a range of backgrounds
and identities (e.g. ethnicity, faith, class, education, gender,
sexual orientation, (dis)ability, age) to lead, design and take part
in the research
3 Democratic participation Encouraging and enabling all participants to contribute
meaningfully to decision-making and other aspects of the
research process according to skill, interest and collective need
4 Active learning Viewing research collaboration and the process of research as an
opportunity to learn from each other
5 Making a difference Promoting research that creates positive changes for communities
of place, interest or identity
6 Collective action Individuals and groups working together to achieve change
7 Personal integrity Participants behaving reliably, honestly and in a trustworthy
working (Banks et al. 2013; International Collaboration for Participatory Health Research
(ICPHR) 2013). This framework includes a list of six ethical issues and a list of seven ethical
principles. The latter has been adopted by the International Collaboration for Participatory
Health Research (ICPHR): (1) mutual respect, (2) equality and inclusion, (3) democratic
participation, (4) active learning, (5) making a dierence, (6) collective action and (7)
personal integrity (see Table 1).
Ethical practices, Banks & Brydon-Miller suggested, require researchers with ‘cultivated
skills’ based on ‘the nuances of the particular situations and people’ in their research
project (2019, 8). They recommend research partners to choose for ‘an agreed set of
ethical principles’ (International Collaboration for Participatory Health Research (ICPHR)
2013, 12) and to pay particular attention to the form, content and communication of the
agreement when the research partners include children or people with learning disabil-
ities or cognitive impairments (Banks et al. 2013; International Collaboration for
Participatory Health Research (ICPHR) 2013; Banks and Brydon-Miller 2019). So far, the
principles have been used in practice, but reections on its use and possible needed
adaptations for certain groups and practices are rare.
To date, there are three known studies. The rst, by Dedding et al. (2020), concerns an
evaluation-based study on the seven principles to reect on the process and its outcomes
in the eld of digital inclusion. They did not fully achieve the principles of democratic
participation and collective action with citizens. Instead, they choose to mainly work with
policymakers in order to accomplish quick results and short-term policy impact. They
encountered the need for situated choices. The second study, by Groot et al. (2018),
concerned an analysis with co-researchers of their participatory research in the eld of
acute psychiatric care. They noted that the seven principles did not tackle the mutual
responsibility of creating a safe setting, in their case the responsibility of both scientic
researchers and co-researchers with lived experiences in acute psychiatric care. They
therefore suggested that in addition to these principles, Tronto’s (1993) care ethical
insights might be useful in gaining a better understanding of the ethical challenges
when working with co-researchers. In the third study, Stapleton and Mayock (2022)
mention the use of the seven principles in combination with the Structural Ethical
Reection model, but they do not reect on the use of these principles. They mainly
focused on the power dynamics in their reection.
In this article we reect on the use of the ICPHR principles with co-researchers with
developmental language disorder (DLD). DLD is a disorder aecting approximately 5–10%
of young children (Tomblin et al. 1997; Law et al., 2000). The disorder occurs in childhood
and is characterized by diculties in learning and using language, both in communication
with others and with oneself (inner language). DLD does not dene one’s non-verbal
intelligence, both people with low non-verbal intelligence and people with normal non-
verbal intelligence can have DLD (Vissers et al. 2021). A person with DLD needs to work
harder to listen to a simple sentence, process it, come up with a good answer and to put
the answer into words. This also challenges their socio-emotional development, as they
need extra time, attention, and energy to understand themselves, others, and the world
around them. This can lead to problems such as a lack of condence, extreme shyness,
depression, anxiety, and strong emotional outbursts as well as long-term diculties in
people’s lives such as challenges regarding independent living and building and keeping
social relations (Conti-Ramsden et al., 2017; Isarin 2012, Isarin 2021; Vissers et al. 2021).
The outcomes of the project, entitled TOSKoploper (DLD Frontrunner), will be described
elsewhere (Aussems et al., forthcoming). The main aim of this article is to explore how the
principles as described above actually help researchers and co-researchers to reect on
their ongoing research practice, and in particular co-researchers with DLD.
Case description
The Dutch project TOSKoploper aims to create space for young adults with DLD to reect
on their ways to independency, to share their experiences, to call attention to the issues
most important to them and to get their voices heard by the people in their day-to-day
lives, including professionals such as policymakers of city councils. A team of three co-
researchers with DLD (Jérôme, Maartje and Meike) and three scientic researchers (Iris, Jet
and Karijn) used an iterative learning process of data collection, analysis and reection. As
the research project started in the context of covid-restrictions (January 2020), this
process was mainly done online.
The research team rstly invited respondents with the help of experiential experts and
professionals in care and education. The inclusion criteria were for the respondent to have
DLD, and to be a young adult (without xed age bracket) and willing to take part in the
research. Soon thereafter, the team created a group on Facebook and WhatsApp for the
respondents and asked them to invite friends and relations with DLD. The researchers
asked the respondents (n = 26) to share experiences of being home during lockdown, and
to post drawings, pictures, poems, or any other forms of expression. At the same time, the
researchers began inviting young people with DLD for online interviews, using Zoom as
a medium. They interviewed the respondents (n = 15) in pairs of one co-researcher and
one scientic researcher. The co-researchers preferred to interview respondents they were
least familiar with, so that they would get to know new insights.
To encourage the respondents to speak freely, the researchers informed them all that
matters is their personal experience and how they think that others can be responsive to
their needs. The aim of this was to instill condence and motivation amongst respondents
to freely share what came to their minds. The research team developed a ‘safety web’,
a model depicting the ways to ensure an ethical approach, to use for the interviews (this
will be published in a separate forthcoming paper).
The researchers collectively analyzed the data during weekly Zoom-sessions
(October 2020 April 2021) using Microsoft Word comments as well as marking the
text with colors. Transcripts were anonymized to avoid easy recognition. After each Zoom
session, the co-researchers took the lead in writing a reection of the sessions and
personally shared this on WhatsApp, Facebook, and LinkedIn. Each main theme has its
own written report, and six themes also have a short animation, e.g. one about abuse and
how to set boundaries. Along the way these were posted on the website of TOSKoploper
( During the analysis, the research team took rst steps
to approach policy makers and professionals in the social domain of three cities, to invite
them to work together to improve (1) access to information, (2) access to social support,
and (3) responsiveness of professionals to the needs of people with DLD.
To explore how the seven ethical principles for PHR (Banks et al. 2013; Banks and Brydon-
Miller 2019; International Collaboration for Participatory Health Research (ICPHR) 2013)
help the researchers and co-researchers of TOSKoploper to reect on their ongoing
research practice, we held regular evaluation sessions with the research team throughout
the research project. Halfway through the project (June 2021) the ethical PAR-principles
were introduced, translated into Dutch (by Karijn), and converted to more understandable
text (by Karijn and Meike) for the co-researchers. For example, one of the co-researchers
did not understand ‘social justice’ (sociale rechtvaardigheid), and therefore it was changed
into ‘a just world’ (een eerlijke wereld). Shorter sentences were preferred, such as ‘everyone
being prepared to listen to the voices of others’ was shortened to ‘everyone listens to the
voice of others.’
Each team member was asked to individually take a look at the principles and to
evaluate how the research team fulls these principles, and to dene whether these
principles are important, or whether they thought something else is also or even more
important (July 2021). Thereafter, the research team held an evaluation session of three
hours on Zoom (Sept 2021). Three couples of one co-researcher and one scientic
researcher took time to reect on the seven ethical principles by using Jamboard, in
which each couple noted their reections. Thereafter, the team discussed this collectively.
Each team member gave approval for the recording and wished to be named by their
actual names.
After the research team had evaluated their ongoing research process, scientic
researcher Karijn analyzed this evaluation with the support of team member Jet and
critical friends (cf. Kember et al. 1997) Christine (PAR expert) and Alistair (care ethicist) and
jointly formulated the lessons learned. This was done during four Zoom sessions of
one hour and one-on-one dialogues between Karijn and Jet, Alistair and Christine
(September February 2021). The co-researchers remained involved by being updated
and invited to give their responses, while they also wrote their own reections that they
shared on social media. See Figure 1 for an overview of the teams, the roles of its members
and each step that was taken during the iterative process.
The rst reaction of the co-researchers when looking at the simplied language of
the ethical principles mainly led to somewhat generic answers. The co-researchers
talked in terms of the overall group process in general. The co-researchers mainly
noted that they enjoyed being in the team, and that they appreciated their role
and inuence, as they hadn’t experienced it like this before. Co-researcher Meike
With many projects you mainly talk about the target group, but you still missed talking with
the target group. Let alone working together. Fortunately, that is now being done more. And
then there is also a dierence in whether you ask someone with DLD a few times or if you
really continue to work with them. We do the latter with our project. . . . And I think that’s the
most beautiful perspective.
When receiving these positive and general evaluations, scientic researcher Karijn won-
dered if the co-researchers felt free to refer to specic challenging situations. She recalled
moments when the co-researchers expressed disagreement and frustration, as when the
analysis of the interviews took longer than they had wished for and preferred quicker
action. When Karijn brought in both positive and negative issues that she remembered,
the co-researchers fully agreed with her analysis with the help of their own remarks, which
ultimately led to a more nuanced evaluation. Table 2 provides an overview of how the
principles were interpreted by the team, here formulated as practical insights (with
concrete aims and actions), with an awareness that the covered practical insights are
not mutually exclusive, thus one situation can tackle various practical insights at once. In
the following paragraphs, we describe the evaluation of the team with the help of the
seven ethical principles as originally formulated by Banks et al. (2012, Banks et al. 2013).
Evaluation of teamwork
Evaluation of ethical
A participatory study with
young adults with DLD on
their way to independency
An evaluation of how we
worked together as research
An evaluation of how the
ethical principles helped to
reflect on the ongoing
research practice
3 scientific researchers
(Iris, Jet & Karijn)
3 co-researchers with DLD
(Meike, Maartje & Jérôme)
26 respondents
with DLD
(incl. co-researchers)
3 scientific researchers
(Iris, Jet & Karijn)
3 co-researchers with DLD
(Meike, Maartje & Jérôme)
2 scientific researchers
(Jet & Karijn)
3 co-researchers with DLD
(Meike, Maartje & Jérôme)
to validate the findings
2 critical friends
(Christine & Alistair)
Figure 1. An overview of the teams, the roles of its members and each step that was taken during the
iterative process.
Table 2. Practical insights for Participatory Action Research, based on the joint operationalization of
the seven ethical principles of ICPHR by a research team with (young) adults with Developmental
Language Disorder.
Aims Actions
Mutual respect Participants listen to each other with respect; every opinion and feeling is welcome, even if you don’t
always agree
Being a strong team because of the differences in experience, knowledge and views, and because of
the ability to adjust to each other’s abilities
Most decisions are made as a team and all participants contribute according to skill, interest and
collective need
Active learning Participants actively learn from each other by both sharing and looking at each other’s perspectives
a difference
Participants take action with different groups, including local councils, professionals and fellow
researchers, to achieve their goals
Participants agree on how and when they act together to make a positive change
Behaving reliably while acknowledging and taking up multiple roles and relationships (friends,
peers, colleagues, counselor)
Equality has been replaced with diversity (see 1.2 for an elaboration).
The text in bold is added to include the different roles of the (co-)researchers (see 1.7 for an elaboration).
Mutual respect
The principle mutual respect is originally dened as ‘developing research relationships
based on mutual respect.’ During the evaluation session, the co-researchers spoke of
actions and attitudes that they found respectful. Meike reassured: ‘We listen to each other;
every opinion is welcome. With respect. Even if you don’t always agree. Every now and
then emotions are present, but that’s okay.’ Maartje expressed that mutual respect also
includes the attitude of being sensitive for these feelings: ‘We respect each other’s
feelings; we ask how the other is doing. We take the other into account when he or she
feels less.’
Jérôme started by giving a more abstract denition of mutual respect: ‘when research-
ers, co-researchers and the participants and all people involved treat each other with the
right principles so that no ethical problems occur.’ When he was asked to clarify, he spoke
of attitudes: ‘if everyone is treated with the best intentions, with friendliness, and that you
accept one another as you are, . . . that everyone is dierent.’ He then positively judged
the team and referred to their actions:
On a scale of one to ten, yes, I think actually just ten! I think we really do, and I also see that
among the participants. We let everyone nish. We give everyone the oor. No nasty remarks
to each other. So it’s really the respect that you see in the group and that’s really very nice. We
just give each other space to tell your story.
The scientic researchers agreed with this evaluation of respect. Nevertheless, Karijn felt
she sometimes failed, especially if she couldn’t pay enough attention to the questions of
co-researchers: ‘If the co-researcher asks help and I’m too busy, then it doesn’t always feel
respectful.’ Maartje comforted Karijn, ‘it doesn’t mean you don’t respect me [when this
happens]. I think, sometimes it’s just like that, that’s not disrespect.’
Equality and inclusion
The principle of equality and inclusion is originally dened as ‘encouraging and enabling
people from a range of backgrounds and identities . . . to lead, design and take part in
the research.’ When co-researcher Maartje looked at this principle, she dug into her
memory, ‘I can’t remember a moment that we did not do that, it doesn’t come to mind.’
Meike positively judged the team: ‘The co-researchers have a big role in the project. We
feel equal in the team.’ However, when Covid hit, researchers and co-researchers alike,
worried about the ability of the co-researchers to work online. Jet recalls: ‘We all
thought, this would be the end of the project, that it would never work. Our prejudices
were pretty strong.’ It took eorts for some co-researchers to adjust to unwritten
etiquette for working online. For example, Maartje struggled to be consistently present
during the online sessions. During one of the rst sessions, she said she still had to take
a shower, switched o her screen, and a while later she came back online while
preparing her breakfast.
The question for the team was, considering the principle of inclusion, whether people
should be allowed to participate their own way, by switching o their camera whilst still
being audible and taking spontaneous breaks. Another question, for the scientic
researchers, was whether they would address these issues in a joint evaluation or in a one-
on-one conversation, and whether they would address the person as an ‘equal colleague’
by giving space for this behavior, or as a ‘student’ by giving instructions on how to be
present. By jointly discussing these frictions, the team gradually got more used to the
setting, and adjusted to each other, whereas some weeks were better than others. Later in
the process, the developed patience for attentively listening to one another was noted by
a colleague from another department who joined one of the sessions to exchange ideas.
She spontaneously remarked, ‘I have never experienced such a pleasant and peaceful
online meeting where people let each other talk.’
When the team started having a full agenda, there was concern that it could become
too much for the co-researchers. Jérôme, Maartje and Meike were taking part both as co-
researchers and respondents, therefore all the time they were working on all these topics
which related to their private lives as well. Meike admitted that the project sometimes
took a toll:
[Our work] is very intense, a lot [of experiences living with DLD] comes very close to me. We
Zoom a lot, and speak with so many colleagues. And I don’t have a clear division between my
work and private life. . . . [Sometimes] I feel I’m getting tired of it. It’s hard for me. It’s about
yourself, anyway.
The team learned that, to full the principle of equality and inclusion, they had to nd
ways to deal with confronting themes. During the sessions of analysis, there was room for
the (co-) researchers to reect on how data resonated with their own experiences, while
ensuring that the experiences of the respondents remained the center of attention.
Further, the team agreed to take enough breaks during and in between their sessions
so that the co-researchers were better able to contribute without getting exhausted. The
team members emphasized that it should not be considered a problem if each member
has dierent abilities. We should value these dierences, as one of the scientic research-
ers pointed out: ‘We’re not equal and we don’t have to be; it is the dierences in
experience, knowledge and views that make us a strong team. I think we do strive for
diversity and inclusion.’ This is also depicted in the next principle of democratic
Democratic participation
The principle democratic participation is originally dened as ‘Encouraging and enabling
all participants to contribute meaningfully to decision-making and other aspects of the
research process according to skill, interest and collective need.’ This includes a) commu-
nicating in language everyone can understand, including arranging translation or interpreta-
tion if required, and b) using participatory research methods that build on, share and develop
dierent skills and expertise. First of all, the team discussed how to interpret this principle,
e.g. does democratic participation mean that only the majority dictates what will be done?
Or should a minority have a say here as well? The team jointly reected on situations on
how decisions are being made and how they view this.
For example, when the team took time to discuss each person’s contribution to each
phase, and looked at the duty nancial administration, co-researcher Meike answered
‘Jet can do that,’ expressing that she found it self-evident for the program manager to
make nancial decisions. The same counted for various other steps, like fundraising and
chairing the weekly meeting and writing the minutes. Co-researcher Jérôme explained:
‘We discuss well together and try to make most decisions as a team. It’s not that
everyone has to be involved in every choice what’s going to happen. The project leader
needs to make the nal decision.’ Jet agreed: ‘everyone has a say in our team. I do think
that on some topics, one person’s voice counts more than another’s. Is that a bad
thing?’ The co-researchers’ voice was often valued most helpful. For example, they
could judge best whether an invitation was written in understandable language for
young adults with DLD.
On the other hand, several times there was tension regarding whether the co-
researchers could decide for all respondents. For example, when the team decided to
work with an illustrator to draw cartoons about the participant’s traumatic experiences,
co-researcher Meike preferred that rstly only the co-researchers would make cartoons.
She rmly noted: ‘The respondents shouldn’t do that yet. Not yet. Maybe later, after we’ve
done our rst presentation.’ At the same time, a respondent was impatiently waiting for
her story of sexual abuse to be drawn. The research team discussed whether new
initiatives such as drawing cartoons should only be done with co-researchers, or also
with respondents. The team did not come up with a xed rule, but decisions were made
per situation, based on the available means and requests from the respondents
Active learning
The principle active learning is originally dened as ‘seeing research collaboration and the
process of research as providing opportunities to learn from each other.’ This includes
a commitment to ‘sharing responsibility for interpreting the research ndings and their
implications for practice.’ When analyzing this principle, co-researcher Meike brought up
that they need one another in their learning: ‘We are very dependent on each other in this
In rst instance, active learning meant to the co-researchers that they could ask for
help if they took up a task they were not familiar with. For example, they also wanted
to transcribe interviews. When they noticed it was too tough for them, they requested
the scientic researchers to take it over. Co-researcher Meike sometimes found it
dicult to wait for help: ‘I nished a report and then I wanted feedback from others
but had to wait for two days.’ Scientic researcher Iris responded that her silence
sometimes hides her own active learning from Meike: ‘by not being present I can
also learn [from your report], we also have to take into account how many work hours
we have available.’
Second, the co-researchers encountered a tension of wanting to be busy while also
needing enough time to process information and to give their contribution. ‘Sometimes
we want to discuss too much. Then I can get a full head, or I feel frustrated. But being very
busy also makes the project big fun, we don’t have to be bored!’ (Meike). In these
situations, Maartje asks others to support her to keep up with the others:
We learn something new every time, the whole team does. That’s what I like best about this
project. . . . Like today, if I really can’t do it anymore, then I can really say so. Then someone can
help me out, so that I don’t miss out in any way.
Lastly, the team members actively learned from each other’s perspective. For example, the
research team reected on advice from respondents not to look too decent when
applying for social support: ‘Don’t do your hair up and wear sweatpants.’ Co-researcher
Jérôme reported afterwards: ‘[Applying] for social support . . . was a pain in the neck for
many participants. One even mentioned that you need to pretend to be dierent to who
you are. Then you get more chance of support.’ One of the scientic researchers noted it
could be considered as lying. In her defense, co-researcher Meike responded, ‘it’s not
about lying, it is about choosing what you tell and what you keep to yourself.’ By
evaluating this principle of active learning, the team became more aware that by jointly
analyzing the data, they gained not only more awareness of the perspectives of the
respondents, but also of how they enact their own lives.
Making a dierence
The principle making a dierence is originally dened as ‘promoting research that creates
positive change for communities of place, interest or identity.’ The research team per-
ceived this as ‘taking action’; ‘because we do research and take action, we do feel we can
make a dierence.’ Co-researcher Maartje was convinced that they had already made this
dierence: ‘We’ve already achieved having [young] adults with DLD talk with other
[young] adults with DLD. That’s so much more than being alone or talking only to parents
or family.’ Meike wrote that the use of Jamboard may have contributed to respondents
opening up about bullying and abuse, an important but till then private kept topic:
The participants . . . used Jamboard more than other times. Maybe that felt safer, more
comfortable to them. . . . A lot of emotions were released, including tears, that we even
took a break. This way they could let it sink in, and then switch to the tips and solutions.
The tips they gave one another were based on their personal experiences, such as asking
help from colleagues when they cannot keep up with the speed, and pretending to be
dierent to the local ocer when applying for social support. The team also spoke of the
dierence they make by working together with the local councils to bring about positive
changes based on the challenges in the social domain:
Our aim is precisely to make a dierence and we feel that we are succeeding. We as
researchers feel very involved with the project. We also work together with dierent groups
to achieve as much as possible. This includes local councils, participants, professionals, and
fellow researchers. Working together helps to achieve our goal (Jérôme).
Collective action
The principle collective action is originally dened as ‘Individuals and groups working
together to achieve change.’ This includes ‘working for agreed visions of how to share
knowledge and power more equitably and promote social change and social justice.’ Here
the question was whether we found agreement on how and when we would collectively
act. During our project the co-researchers and scientic researchers expressed a desire to
start acting already during the process of analyzing, but this still left room for debate.
Should all data be well analyzed so that actions represent all involved young people with
DLD, or should we leave room for individuals to take action in advance?
Co-researcher Meike preferred to quickly make an appointment with the social coun-
cils, to speak about her personal experiences and what she thinks needs to be done. As an
experiential expert, she found it hard to work as a co-researcher who acts with and on
behalf of the respondents in the process rather than only speaking for herself. After the
rst ndings were written up and published in several media channels, the co-researchers
began to speak more about the experiences of both themselves and the other
Briey after the ndings were launched, a respondent whose story about sexual
abuse was published as well expressed her gratitude (using words and emoticons):
‘Wanted to let you know that I really nd it great what you do! It feels good that you mean
so much to us in DLD etc . . . really great respect’. While the respondent gave credit to the
research team, it clearly concerned an outcome of a genuine process in which she greatly
contributed to the collective action with the research team, and fully deserved the credit
in person.
Personal integrity
The principle personal integrity is originally dened as ‘Participants behaving reliably,
honestly and in a trustworthy fashion.’ This includes ‘being open to challenge and
change, being exible and prepared to work with conict.’ Here the question was
how to deal with the regularly encountered tension regarding the various positions
of the researchers. For example, the co-researchers struggled with their multiple roles
of being a researcher, respondent as well as being friends with the respondents.
Even after the transcripts were anonymized, the co-researchers could sometimes
guess whose intimate experiences they were analyzing. This made them sometimes
feel uncomfortable, but the discomfort became less when they realized that also
their own intimate experiences were jointly analyzed. They often did not hide it if
theirs was analyzed: ‘Is this me? It could be me.’
Scientic researchers sometimes also shared personal experiences in their interaction
with co-researchers and respondents. For example, if Karijn felt that a respondent wanted
to open up about a trauma but hesitated, she briey mentioned understanding the
struggle to speak about traumatic issues, adding something relatable about herself. For
example, that she needed a long time to nd courage to speak up after her boyfriend had
crossed her boundaries. She noticed that respondents would then feel more at ease to
also conde their trauma. Two respondents who had opened up about sexual abuse to
her, approached her afterwards to ask for mental support. One of them was co-researcher
Meike. She wrote about her reason to open up to Karijn and how she decided to utilize her
experience in the research project:
In private, something moved me that made me want to talk about [sexuality and abuse]. . . .
I felt I could approach Karijn because of her own experiences . . . and because she is also
involved in this at work. After talking to her about it, I put it down on paper. . . . You especially
want to share it with the target group DLD and they are visual thinkers. I thought if you make
illustrations of it, it would also come across as more light-hearted. . . . It felt good for me to do
this, because I had a goal in mind.
A few months later the research team attended a congress to present their ndings on
bullying and abuse. As Karijn presented the ndings, the co-researchers spoke about their
personal experiences relating to the themes. To Meike’s surprise, a colleague, who is
a psychologist, afterwards showed concern for the contribution of the co-researchers.
Meike wrote how this protective care aected her:
There were very nice responses from the audience, such as ‘We can’t clap on this, it’s so
touching.’ [Later,] we heard that a colleague . . . was worried. Were the co-researchers
protected enough? I replied that [her concern] hit me with frustration. . . . We are no longer
clients, but colleagues. . . . For us, the conference felt like a great opportunity with good
timing, which we certainly did not regret.
Jérôme, like Meike, appreciated the psychologist’s concern and soon thereafter had a chat
with her. He reassured his colleague, ‘the situation will never disappear from my memory,
but by sharing [my experience with bullying], rst with the illustrator, and thereafter with
the audience, has made this memory lighter.’
Despite this appreciation to be able to open up about their traumatic experiences, one
question lingers: how can the researchers ensure that their questions are not too con-
fronting, painful and/or harmful? And should the research team rstly ensure that there is
professional support available in case it is required afterwards? Or is it enough to refer
them to their physician? Whereas the diculty of dealing with multiple roles was often
discussed in the team, it was not covered by evaluating the research process with the help
of the seven principles. When discussing the article with critical friends the insight
emerged that it could be categorized under personal integrity, as it is about how to be
exible while taking up dierent, sometimes conicting roles.
Discussion Lessons learned from using the principles
The purpose of this article was to explore how the seven ethical principles for PHR help
researchers and co-researchers to reect on their ongoing research practice, and in
particular co-researchers with DLD. The principles were dened with an awareness of
the precariousness of the context in which PAR is practiced, aiming for an understanding
of the complexity of participatory research, the ability to tackle ethical challenges, and to
encourage institutions to modify their existing values, requirements and ways of working,
also with respect to people with cognitive impairments (Banks et al., 2012, Banks et al.
2013; Banks and Brydon-Miller 2019).
The research team of three scientic researchers and three co-researchers decided to
jointly develop and publish a Dutch research report in order to do justice to the mean-
ingful participation of all. Further, they regularly took time to reect on their approach.
They learnt that the ethical principles were not only relevant but also an encouragement
to critically evaluate the collaboration and its intended and unintended outcomes.
Adjustments were made to overcome three diculties with regard to applying this
framework in practice with co-researchers with DLD. Together with critical friends (cf.
Kember et al. 1997), these diculties have been analyzed and discussed.
First, the team encountered the diculty for co-researchers with DLD to grasp the
meaning of the seven ethical principles due to the abstract language that is being used to
formulate these principles. As a solution, the team jointly unraveled and redened the
meaning of the principles and how to put them into practice. The principles were
consequently rewritten in easier to understand practical insights with concrete aims and
actions. These newly dened practical insights may have lost some of the nuance of the
principles, but also added nuance as it included the perspective of the co-researchers with
DLD. The concept thus became more of use for them to actually participate in the ethical
The second diculty for the co-researchers was to critically reect on the actual
research process during the planned evaluation sessions. Their rst, perhaps overly
positive, evaluation conveyed that the co-researchers seemed easily satised. They
noticed that they had not experienced a similar kind of inuence or voice in a group
before, such as having the power to jointly decide how the research project was to be
carried out. It was as if they had stepped into a warm bath. For a more nuanced and critical
evaluation of the co-researchers, time and eort was needed, e.g. by reminding co-
researchers of specic moments of discomfort and excitement in the collaboration, like
when they wanted to contribute to transcribing interviews, but felt discouraged when
they noticed it was too dicult to do so. Even if space is created for inclusion in all
research phases, sometimes it remains dicult to fully include persons with cognitive
impairments (Balcazar et al. 1998).
The third diculty is that the ethical issue of ‘Blurring the boundaries between
researcher and researched, academic and activist’ (Banks et al. 2013, 267) can easily be
overlooked. While the ethical issue of the multiple roles is elaborately discussed by various
researchers (e.g. Banks et al., 2019; Orne and Bell 2015; Keenan et al. 2017; MacFarlane and
Roche 2019; Hersh, Israel, and Shiggins 2021), the seven ethical principles do not clearly
dene how to act as a research team encountering this ethical issue. Therefore, it was
afterwards included in the formulation of the practical insight personal integrity: ‘behaving
reliably while acknowledging and taking up multiple roles and relationships (friends,
peers, colleagues, counselor).’
One of the lessons learned is that these blurred boundaries between the multiple roles
need to be handled with sensitivity. These multiple roles can take a toll, not only on the
respondent and the co-researcher, but also on the scientic researcher, as they put in a lot
of emotional work. All researchers are deeply involved, not only in interaction with the
respondent, but also during individual moments of analysis and writing. Recounted
traumatic experiences of the respondents be an occurring aspect of that interaction.
Responsiveness to these sensitive situations thus needs to be seen as an integral part of
the ethical insight of mutual respect: ‘participants listen to each other with respect; every
opinion and feeling is welcome, even if you don’t always agree.’
To overcome these three diculties of evaluating the research process, research teams
need to take enough time, space and patience to critically reect on the ethical issues
which are inherent to any PAR project. It needs to be felt by all stakeholders that joint
evaluations benet the whole research project. In case the co-researchers feel challenged
to connect ethical principles to concrete situations, the project leader can support or
facilitate them by bringing in complex situations they encountered and ask them whether
the team acted ‘right’ according to their own perspective, or if they prefer to do it
dierently next time. This way, team members are encouraged to share more concrete
practical points based on their own experiential expertise, rather than having to respond
to abstract principles that are dicult to grasp.
As a follow up to the evaluation, the research team can utilize their own developed
practical insights during subsequent meetings. This way they can reect what works best
and, where necessary, they can adjust their insights. Ideally this is an iterative process. The
practical insights will then gradually come to life, because they will be related to concrete
situations that the team has experienced together. Rather than depart from a specic
notion of the good, this bottom-up approach is better suited in formulating how an
ethically sound PAR project might consequently be envisioned by all stakeholders,
whereby any concomitant practical insight is not xed, but continues to develop through
the lessons learned. Finally, this study did not depart from a specic norm or notion of
what is (or ought to be) ethical, because it does not conceive of good ethical practice as
something static or a-historical (cf. Pols 2010; Niemeijer 2015), as the ethical content of
practices might itself be comprehended as ‘a way to be normative’ (Willems and Pols
2010, 163). In fact, even (the supposedly neutral practice of) ethics and moral reasoning as
such might not be conceived of as value free, but instead as context sensitive, serving
multiple interests (Walker 2007; Leget 2013; Niemeijer 2015). Ethical principles are thus
perceived as abstract and prescriptive in all of its detail (Tronto 1993, 11–12).
We therefore conclude that we need to use terminology that leaves enough room for
research teams to formulate for themselves how they can work best. Several terms, such as
critical insights (Leget, Van Nistelrooij, and Visse 2017), ethical considerations (Hersh, Israel,
and Shiggins 2021) and ethical qualities and parameters (Tronto 1993) relating to how to
work together with the people involved concretely and democratically might be more
appropriate. However, considering our practical approach, we have chosen the term
practical insights, as it illuminates that these insights are based on learning by doing and
are not xed, but build on (good) practices, whilst still allowing enough room for adjust-
ments to the particularities inherent to each research process.
This research has been made possible by the nancial support of ZonMw (637003001). We owe
many thanks to all the team members who worked with us in this project, and who were willing to
share their time, energy, and experiences with us. Further, we are thankful for the contributions of
all the professionals who have contributed to the implementation of this research project. We
recognize the value of your collegiality and critical attitudes.
Geolocation information
This concerns a research project in the Netherlands, due to the covid restrictions mainly done
online, with scientic and experiential experts from various parts of the country.
Data availability statement
The raw data of this research project cannot be shared due to ethical reasons.
Disclosure statement
No potential conict of interest was reported by the author(s).
This work was supported by the Netherlands Organisation for Health Research and Development
Karijn Aussems
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... The principles involve (a) mutual respect, (b) equality and inclusion, (c) democratic participation, (d) active learning, (e) making a difference, (f) collective action, and (g) personal integrity. Reflection on these principles has been published in a separate article (see Aussems et al., 2022). ...
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In our increasingly paced society, a lot is expected from care-dependent people. In the Netherlands, everyone is expected to live independently with the help of their social network, but this has proven challenging. In the participatory action research project TOSKoploper, young adults with developmental language disorder (DLD) opened up about their struggles on their way to independent living, including keeping up with the pace at school and work as well as addressing traumatic experiences without family support. They prefer professional assistance in overcoming their problems, but their support needs are hardly acknowledged by professionals in the social domain. They call for people’s patience, appreciation, and support for their capabilities so that they can live an active social life.
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The popularity of Participatory Action Research (PAR) increases the risk of tokenism and blurring the boundaries of what might be considered ‘good’ PAR. This became a pressing issue when we were invited by the City of Amsterdam to conduct PAR on digital inequality with vulnerable citizens in Amsterdam, within serious constraints of time and budget. We decided to take up the challenge to offer citizens an opportunity to share their needs. This paper aims to increase the transparency of the complex reality of a PAR process in order to help new researchers learn about the challenges of PAR in real-life situations, and to open up the discussion on the quality and boundaries of PAR. Though we managed to implement some core ethical principles of PAR in this project, two were particularly under pressure: democratic participation and collective action. These jeopardized collective learning and might unintentionally feed stereotypes regarding people’s capabilities. Nevertheless, this small and local study did manage to create ripples for change.
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Involving children in participatory health research (PHR) provides exciting opportunities to gain insights into their perspectives and capacities and encourages them to make a meaningful contribution to issues affecting their lives. It is underpinned by a rights-based approach, where children’s evolving expertise is valued. In PHR, children are not just research participants – they are co-researchers. This raises challenges and ethical issues on several levels, including the nature of child engagement, the role of adults, and methods to promote child agency, while also ensuring their safety is not compromised. This chapter uses real international exemplars to illuminate the complexity and debate on theory and practice in relation to PHR with children. These examples reflect the flexibility inherent in the approach to accommodate culture and context. They also highlight the need to avoid tokenism, which might undermine children’s agency, and encourage first attempts, reflexive practice, and progressive improvements in PHR competence. Children’s right to subvert or deny the participatory process is recognized as a challenge to the adults involved but is also a way to realize impacts and outcomes that are more relevant for those children. Finally, Kids in Action is presented as an international network of PHR projects involving children to promote best practice, develop and share resources, link similar projects to maximize impacts, and provide a platform for children’s voices in relation to global issues.
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Participatory research is well-established as an approach involving people with a direct interest in, or experience of, the issue being studied in carrying out research. However, it raises unique and challenging ethical issues. Traditional concerns with respect for the rights to confidentiality, consent, privacy and protection of 'research informants' do not translate easily into participatory research. Boundaries between researchers and those researched are often blurred; research trajectories may be emergent and unpredictable; and major ethical issues revolve around partnership, power, equality and respect for diverse knowledges. The book introduces the key ethical issues in participatory research, drawing on ethical theory and relevant literature before presenting seven substantive chapters, each on a different theme, such as power, ownership, confidentiality and boundaries. The chapters feature an introductory overview of the topic with reference to the literature, followed by four real-life case examples written by participatory researchers and short commentaries on each case. Drawn from around the world (from Denmark to Tanzania), the cases illustrate a range of ethical issues, outlining how they were handled and the reflections and feelings of the contributors. Focusing on developing ethical awareness, confidence and courage to act in ethically challenging situations in everyday research practice, this book is an invaluable resource for all participatory researchers. © 2019 selection and editorial matter, Sarah Banks and Mary Brydon-Miller; individual chapters, the contributors. All rights reserved.
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In the field of participatory health research (PHR) and related action research paradigms, limitations of standard ethical codes and institutional review processes have been identified. PHR is highly situational and relational, part of a hierarchical health care context and therefore ethics of care has been suggested as a helpful theoretical approach that emphasises responsibilities and relationships. The purpose of this article is to explore the value of Tronto’s second-generation ethics of care for reflection on ethical challenges experienced by academic researchers. Using the design of a collaborative auto-ethnography, this article starts from a story of a researcher who deals with dilemmas in responsibility to care for co-researchers with lived experiences during a PHR study in the field of acute psychiatric care. By analysing the challenges together with all co-researchers, using a framework of ethics of care, we discovered the importance of self-care and existential safety for an ethical PHR practice. The reflexive meta-narrative shows that the ethics of care lens is useful to untangle moral dilemmas in all participatory research-related paradigms for all engaged.
Background: Conducting Patient and Public Involvement (PPI) in health research is a way of building knowledge that incorporates the experience of service users, adds research impact, and helps avoid wasting resources on findings that have little relevance to people or cannot be implemented. We argue that there is a need to extend ethical considerations currently focused on research participants with aphasia to encompass and guide expectations of involvement in partnerships with people with aphasia across the research lifecycle. Method: We use the 2018 revision of the Australian National Statement on Ethical Conduct in Human Research as the framework for this article. The National Statement is underpinned by values based on respect for human beings, research merit and integrity, justice, and beneficence. While the National Statement outlines the ethical standards for conducting human research with research participants in Australia, the ideas and principles within it draw on international norms. Building on the seven elements of the research process introduced in Chapter 3 of the National Statement, we develop a model for examining ethics and PPI across the research lifecycle. This model revolves around an extra phase, Element Zero, required for the preparation of PPI for both researchers and research partners with aphasia. Results: There are many ethical considerations when involving patients and members of the public across the research lifecycle. Ethical questions that arise in relation to patients and the public as partners (whether in a role of consultant, advisor, collaborator or within user-controlled projects) may differ from those associated with participants. The nature of the relationships built through the PPI process requires a clear extension of the remit for research ethics to encompass ethical reflection both before the design of a project and after a project has ended as represented by the Ethics and PPI Research Lifecycle Model. Conclusion: The role of people with aphasia as partners in research recognises their expertise and potential to improve the relevance and impact of research endeavours. Reflecting on the ethical implications of this is crucial, protecting, empowering and enabling both researchers and partners with aphasia to engage with each other through respectful and positive research relationships.
This textbook is a comprehensive guide for students interested in using participatory research to improve people’s health and well-being. It is especially designed for those working in the fields of health and social welfare who are embarking on participatory research for the first time. It covers all phases in participatory research from “getting started,” to “acting for change,” “continuing the journey” and “articulating impact.” Its unique format helps readers understand the essence of participatory research as a comprehensive approach for doing research which is underpinned by a set of fundamental values. The many real life examples of participatory research projects from around the world inspire readers to find creative ways to manage their own research while opening up new horizons in their work.