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Participatory action research: Considerations for ethical review
Abstract
This paper addresses the distinctive nature of participatory action research (PAR) in relation to ethical review requirements. As a framework for conducting research and reducing health disparities, PAR is gaining increased attention in community and public health research. As a result, PAR researchers and members of Research Ethics Boards could benefit from an increased understanding of the array of ethical concerns that can arise. We discuss these concerns in light of commonly held ethical requirements for clinical research (social or scientific value, scientific validity, fair subject/participant selection, favourable risk-benefit ratio, independent review, informed consent, and respect for potential and enrolled participants) and refer to guidelines specifically developed for participatory research in health promotion. We draw from our community-based experiences in mental health promotion research with immigrant and culturally diverse youth to illustrate the ethical advantages and challenges of applying a PAR approach. We conclude with process suggestions for Research Ethics Boards.
... Mechanisms are however needed that go beyond standard consent requirements and enable the project staff to continuously reassess the young people's willingness to remain in the project and engage in activities for an extended period. 20,33 Engaging young people in obesity prevention research has the potential to bring benefits to the youth and their communities. 37 In CO-CREATE, although we did not systematically assess which benefits were brought to the youth through their participation in the project, we observed that the young people developed new awareness of systemic factors influencing obesity, acquired decision-making and observation skills, and learned to use new tools such as Photovoice. ...
... Our experience is that it may be useful in projects spanning several months or years 38 to adopt a reflexive approach in project design and development 10 by regularly evaluating progress, and making amendments to the project plan integrating the perspectives of the young people, 32 although this may mean that renewed ethics approval for each new research cycle is required. 18,20 Recent frameworks to support reflective practice may provide useful guidance on this matter. 39 Reflexivity and flexibility are particularly important under changing circumstances. ...
... 30 As the project developed, we however realized that the traditional way of thinking "ethics" had some shortcomings and did not fully support participatory approaches under which youth are encouraged to endorse a role of research collaborators (who develop policy ideas) rather than research participants (who fill in questionnaires and are being observed). 20 We also noted that communicating early in the project regarding the distinction between these roles would have been useful. Ethics tools may be needed that aim to ensure good and safe interaction between project staff and participants rather than solely focus on protecting participants from potential harm. ...
Engaging youth in obesity prevention research and policy action is essential to develop strategies that are relevant and sensitive to their needs. Research with young people requires critical reflection to safeguard their rights, dignity, and well‐being. The CO‐CREATE project used various methods to engage approximately 300 European youth aged 15–19 years in the development of policies to prevent adolescent obesity. This paper discusses ethical considerations made in the project pertaining to the youth's voluntary participation, their protection from obesity stigma, respect for their time, data privacy and confidentiality, power balance, and equality of opportunity to participate in the research. We describe measures implemented to prevent or limit the emergence of ethical challenges in our interaction with youth and discuss their relevance based on our experience with implementation. While some challenges seemingly were prevented, others arose related to the youth's voluntary participation, time burdens on them, and the sustainability of participation under the Covid‐19 pandemic. Concrete and ongoing ethical guidance may be useful in projects aiming to interact and build collaborative relationships with youth for long periods of time.
... There can be several barriers for people or communities to participate in a PAR process: PWUDs can be struggling to meet daily (survival) needs or encounter practical, financial, mental, physical, personal or social issues. Alongside such possible complexities, people can be(come) uninterested or additionally burdened about transforming representations, knowledges and social structures -especially on a voluntary basis (Khanlou & Peter, 2005;Salmon et al., 2010). Consequently, participation in itself is not automatically empowering (Cleaver, 1999;David, 2002). ...
... It has been noted by other PAR researchers that the structures of academia, research funding agencies and structures, ethical commissions, etcetera can be less accommodating towards comprehensive participatory research. Difficulties can arise specifically because such studies (and their outcomes) cannot be planned upfront in a detailed manner (Burgess, 2006;Blake, 2007;Dupont, 2008;Khanlou & Peter, 2005;Livingston & Perkins, 2018;Smith et al., 2010). ...
... Aside from general expectations of ethically sound research and avoiding harm to participants, PAR adds both expectations and ethical risks (Dupont, 2008;Khanlou & Peter, 2005;Kidd & Kral, 2005;Livingston, 2018). In addition to knowledge-creation, the explicit and inherent political goals of PAR for intensive and genuine participation, the direct improvement of well-being, self-emancipation and action can be regarded as additional ethical commitments (Kidd & Kral, 2005). ...
Stigma towards people who use(d) illegal drugs (PWUDs) has been articulated as an enduring societal problem by scholars, practitioners, advocacy organisations and PWUDs. Stigma can negatively affect the overall well-being and health of PWUDs, especially with regard to people who experience problems with drugs, who would like to receive support or are in recovery. Furthermore, an extensive body of literature documents the phenomenon of intra-group stigma and boundary work among PWUDs as a strategy for constructing positive (narrative) identities. In this sense, it has been argued that the rationale of drug stigma and stereotypes is maintained and reproduced across several levels, including academia and PWUDs. Meanwhile, the question of how (intra-group) drug stigma could be altered, remains pressing. Against this background, this doctoral study took on a Participatory Action Research (PAR) approach. The epistemology of PAR advocates a close and equal cooperation between academic researchers and participants – co-researchers in this case – in the articulation and enactment of scientific research. Moreover, a significant element of PAR is to engage in action, in order to address concerns expressed by the involved people. Based on the existing knowledge about intra-group stigma, this study explicitly gathered a diverse research team of nine people who use(d) different illegal drugs, in diverting ways and with varying backgrounds. As such, this research aimed to gain insight into 1) significant concerns within the research team regarding drug use and how team members can engage in action(s) on a personal and collective level; and 2) theoretical, ethical and methodological lessons learnt from conducting PAR with a diverse group of PWUDs, also with regard to boundary work. As a research team, we worked together for a period of two years and collaboratively decided on the focus, strategies and objectives of this work. Through team meetings (N=18) and one-on-one conversations (N=14), the PAR team decided to spotlight (public) drug stigma as a major issue. We critically analysed the architecture of historical and contemporary drug stigma, its structural (f)actors and its social, political, personal and experiential dimensions. Based on these reflections and analyses, our creative actions eventually encompassed the publication of an article in Sociaal.net and our participation as a team to the 2020-2021 conference of the Flemish centre of expertise on alcohol and other drugs (VAD). The analysis of the team shows that stigma provides a skewed and reductionist representation of drugs, their diverting meanings and the people who use them. The nexus between stigma and taboo, creates societal knowledge lacunas with a pervasive impact on people who are (in)directly targeted by drug stigma. Based on a historical reflection and a vast body of (experiential) knowledge within the team, co-researchers question political and structural rationales for upholding drug stigma. The PAR collaboration of a heterogenous team of PWUDs, moreover resulted in a gentler theoretical and empirical interpretation of symbolic boundary work among PWUDs. Therefore, the concept of intra-group stigma was expanded and offers pathways for further research and social change. Furthermore, our rather experimental practice of PAR enriches the understanding of diverting fields of (experiential) expertise, their relevancy for academic research and strategies to blend various ways of knowing in a democratic way. Therefore, this study adds to the epistemological, ethical and methodological understanding of collaborative research, especially regarding PAR in drug research and criminology.
... PAR also emphasizes the importance of including those who seldom have a voice in research and policymaking (Abma et al., 2019;Cornwall & Jewkes, 1995; International Collaboration for Participatory Health Research (ICPHR), 2013b; Khanlou & Peter, 2005). To empower these citizens, it is essential to share control between researchers and involved citizens. ...
... While this will depend on the focus of the study, stemming from an emancipatory movement the focus is on the poor and marginalized in society, who seldom have a voice in de ning the problem and solutions. e focus is on shared learning and action for social change (Abma et al., 2019;Cornwall & Jewkes, 1995;Khanlou & Peter, 2005), within the local context. It is not a 'quick x' and it does not follow a linear and predictable process. ...
... Participatory action research (PAR) is increasingly recognized as an appropriate approach to use to enhance the health and well-being of citizens living in disadvantaged circumstances. PAR has the potential to empower citizens regarding issues that a ect them by engaging them in shared learning and action in an attempt to co-produce better worlds (Bradbury et al., 2019;Cornwall & Jewkes, 1995;Khanlou & Peter, 2005). e research outcomes are often local and therefore generalization and scalability of outcomes are generally low (Greenhalgh et al., 2016). ...
In today's digitizing society, many citizens experience difficulties when they use online services because they don't have access to (fully workable) devices and/or have a low level of ICT skills. In this thesis I aim to deepen the understanding of the complex daily realities of citizens with a low socioeconomic position in the digitizing society and show that there is an urgent need to develop policies and practices that match the lifeworlds of these citizens.
... In other words, 'PAR involves all the relevant parties coming together to study a common problem, devise plans to deal with it and implement these plans' (Ngwenya 2018, 96). It is a local, participatory, contextual and situated approach set on reducing the researcher's role and increasing the role of the 'researched' (Khanlou and Peter 2005). Their voices and stories become significant and guide the social change process. ...
... The University of the Western Cape's ethics committee granted ethical approval (No. 15/2/ 15). As is common in PAR, informed consent was a bi-directional process; an ongoing negotiation process between researchers and participants (Khanlou and Peter 2005). In addition, participants signed informed consent letters which emphasized anonymity and confidentiality and their rights to remain silent or withdraw. ...
Participatory action research (PAR) is a form of community-driven qualitative research which aims to collaboratively take action to improve participants’ lives. This is generally achieved through cognitive, reflexive learning cycles, whereby people ultimately enhance their wellbeing. This approach builds on two assumptions: (1) participants are able to reflect on and prioritize difficulties they face; (2) collective impetus and action are progressively achieved, ultimately leading to increased wellbeing. This article complicates these assumptions by analyzing a two-year PAR project with mothers of disabled children from a South African urban settlement. Participant observation notes, interviews, and a group discussion served as primary data. We found that mothers’ severe psychological stress and the strong intersectionality of their daily challenges hampered participation. Consequently, mothers considered the project ‘inactionable’. Yet, many women quickly started expressing important individual and collective wellbeing transformations. To understand these ‘unlikely’ transformations, a feminist relational account, in particular, that of relational wellbeing, proves essential. We reflect on the consequences of these findings for the dominant PAR methodology and operationalization, and propose to sensitize future PAR with marginalized women by employing relational wellbeing as an overarching ontological awareness.
... Eddy also researched the process of the YPAR for his Masters thesis in Education. Thus, in keeping with many YPAR projects (see Khanlou and Peter, 2005;Wilson et al., 2018), Eddy had multiple roles as a youth worker, an animator of the YPAR and a student-researcher (see Davis-Rae, 2021). Eddy's youth work organisation had been on a 3 year, Te Tiriti o Waitangi inspired, journey to become more culturally responsive and as part of this Eddy and his colleagues had spent considerable time learning about relational Kaupapa M aori approaches with youth. ...
... Similar to other YPAR projects (see, e.g. Cahill, 2007;Cullen and Walsh, 2020;Khanlou and Peter, 2005), consent for this project needed to be dynamic and regularly negotiated throughout the project due to the length of time commitment and ongoing complexities of power related to the project. While youth participants did give initial signed one-off formal consent, Eddy recognised that this needed to be viewed as an active and ongoing process which involved a lot of listening on his behalf for 'youth cues' that indicated active consent (see Houghton, 2015). ...
The growth of relational, participatory, collaborative and emergent research approaches in recent years has brought new ethical challenges for research with children and youth. These approaches require greater consideration of the specific social and cultural contexts of the research, along with the greater emphasis on researcher–participant relationships that often occur over sustained periods of time. Very few tools are available to help researchers think through the everyday ethical dilemmas such research can raise. In this article, we review the theoretical underpinnings of feminist and indigenous research methodologies that have encouraged these emerging approaches. Through examining an 18-month Youth Participatory Action Research (YPAR) project case study, we critically review ethical moments relating to negotiating consent over a sustained period of time, enhancing co-design and navigating power issues between adult and youth researchers. We conclude with a number of questions to ‘think with’ when reflecting on ethical research with children and youth.
... The study used methods consistent with tenets advocated in Participatory Action Research. Participatory Action Research (PAR) is a methods and a philosophy that combines ideas from action research (developed by Kurt Lewin) and participatory research (developed in Tanzania in the 1970s) (Bargal, 2006; Khanlou & Peter, 2004). This, and other forms of participatory research, involve approaches that empower community members and increase their involvement and voice in the research process (Taylor, et al., 2004). ...
... PAR fosters agency through creation of goals on the part of the community because they make decisions about what is being researched and about what changes will occur as a result of that research (Phillips & Vavra, 2008). PAR incorporates planning, an intervention, and an evaluation but it also involves an educational component for all those involved (Bargal, 2006;Green et al., 1997;Khanlou & Peter, 2004). Constant cooperation between parties involved and a commitment to sustainability is also a key component of PAR (Bargal, 2006;Israel et al., 2005). ...
Tourism is often identified as a strategy to ameliorate the wellbeing of poor communities and their most vulnerable members – women and their children. Women’s ability to get involved in and benefit from tourism is, however, conditioned by traditional gender roles and consequent education handicaps. Development programs often target women to mitigate these disparities. This paper examines whether an intervention by the Peace Corps resulted in improved human agency and self-determination among indigenous Q’eqchi’ women in Alta Verapaz, Guatemala. The paper reports the accomplishments and shortcomings of the intervention and elaborates on the practical and theoretical implications of the findings.
... Participatory Action Research (PAR) is a research approach which has developed from action research and participatory research concepts and ideologies [1]. It is an approach which aims to effect context-specific change or development, through shared decision-making and promotion of equality of the voices of the participants. ...
... However, the extension of PAR methods into health service research poses challenges for ethical review and the ethics and clinical research governance oversight. Considerations for ethical review of PAR projects involving health promotion activities suggest items that may be incorporated into the Research Ethics Boards (REB) review [1]. These include ensuring an understanding of the PAR goals and methodological tools by REB members, inclusion of wider communities in the review and evaluating the ethical implications of the proposal in a way suitable to encompass the variety of approaches that may be taken, rather than in a list-oriented way. ...
Background
Participatory Action Research (PAR) is a methodology often used in social sciences, which involves groups of people in action, reflection and iterative change. In PAR, ‘traditional’ researchers become participants, and people who comprise ‘traditional’ participants become researchers, facilitating cohesiveness and communication within the team. However, PAR is less used in healthcare, despite the complexity of providing and receiving health and social care. Development and testing of the delivery of new models of care is an area with increasing service-user participation, but often with no structured or formalised framework to embed end-users. This may be due in part to the complex ethical and governance systems in healthcare research, and the lack of practical guidance on using PAR as a research method within this context.
Methods
We carried out a PAR project to develop and evaluate the implementation of a new model of care for the assessment and management of respiratory conditions in the community (MISSION ABC). The care model delivered a community-based multidisciplinary clinic involving healthcare staff from both primary and secondary care. Regular sessions were held for participants (including patients, healthcare staff, research staff) to discuss observations, reflections and suggestions for the development and delivery of the care model. At the end of the project, meetings were held with representatives from the different groups of participants to discuss overall views about the study and ethics and research governance challenges specifically.
Results
We present key perspectives from various stakeholders involved in the PAR process, highlighting benefits and challenges. Specific challenges relating to ethical and governance approvals encountered in the set-up and delivery of the project are described. These include the design of the study protocol, approaches to consent, presentation of study information within the current ethical and regulatory frameworks and maintaining the flexibility of study methods and roles of participants throughout the study period. Recommendations for improvement in the research pathway that PAR researchers could adopt to enable a meaningful and successful PAR approach are made, in addition to suggestions for overarching ethics and governance frameworks.
Conclusions
Developing new models of healthcare benefits significantly from collaboration with stakeholders so that the design and delivery are feasible and acceptable to all. However, the current UK research approvals and governance frameworks present challenges to design and successfully deliver PAR studies in healthcare; we present possible solutions.
... Le code d'éthique du CERRI comprend des thèmes semblables à ceux que l'on retrouve dans l'Énoncé de politique des trois Conseils : Éthique de la recherche avec des êtres humains (IRSC, CRSNG, et CRSH, 2018) (EPTC2) ou autres lignes directrices d'ordre éthique généralement utilisées par des conseils d'éthique dans les universités. Celles-ci comprennent la sécurité et le mieuxêtre des sujets interrogés, la confidentialité, la justice, le consentement éclairé, etc. (voir Khanlou et Peter, 2005). La visée de l'EPTC2 est de couvrir toute la recherche au Canada et comprend une section dédiée à la recherche avec les peuples autochtones, énonçant que son existence « [...] n'a pas l'intention de remplacer ou de prévaloir sur l'orientation offerte par le peuple autochtone lui-même » (2018 : 107, traduction libre). ...
... Nous croyons qu'avec une meilleure compréhension de la part des organismes de financement et de promoteurs de la recherche en ce qui a trait à la valeur ajoutée de la recherche communautaire et participative, les institutions dans le Sud et les communautés autochtones arriveront à travailler main dans la main pour effectuer de meilleures études et établir des stratégies en fonction de la pertinence des projets de recherche dans leur conception et leur mise en oeuvre. L'éthique de la recherche est fortement reliée au contexte culturel et c'est par la médiation et l'établissement de relations sincères entre deux visions du monde et tout ce qui s'ensuit que le travail scientifique peut être considéré d'abord, communautaire et enfin, éthique (Khanlou et Peter, 2005 ...
... Las técnicas gráficas se han popularizado, al igual que el uso de tecnologías que permiten la discusión a partir de la imagen (Madden y Breny, 2016). Tal es el caso de photovoice, herramienta para obtener datos cualitativos que son creados por los propios participantes y cuyo uso se ha aplicado a la investigación-acción participativa (iap) (Khanlou y Peter, 2005). El espacio universitario suele definirse como seguro y libre de violencia; sin embargo, ahí también se observan relaciones de poder verticales y estructuras normativas que permiten situaciones de acoso y abuso. ...
... La técnica de photovoice constituye una metodología cualitativa relevante para la discusión desde la investigación-acción participativa (Khanlou y Peter, 2005). En esta investigación, esto se evidenció en la discusión propiciada por las fotografías, cuya narrativa implicó la visualización de un cambio de conducta y la acción para la mejora de la comunidad. ...
... Las técnicas gráficas se han popularizado, al igual que el uso de tecnologías que permiten la discusión a partir de la imagen (Madden y Breny, 2016). Tal es el caso de photovoice, herramienta para obtener datos cualitativos que son creados por los propios participantes y cuyo uso se ha aplicado a la investigación-acción participativa (iap) (Khanlou y Peter, 2005). El espacio universitario suele definirse como seguro y libre de violencia; sin embargo, ahí también se observan relaciones de poder verticales y estructuras normativas que permiten situaciones de acoso y abuso. ...
... La técnica de photovoice constituye una metodología cualitativa relevante para la discusión desde la investigación-acción participativa (Khanlou y Peter, 2005). En esta investigación, esto se evidenció en la discusión propiciada por las fotografías, cuya narrativa implicó la visualización de un cambio de conducta y la acción para la mejora de la comunidad. ...
La principal aportación de esta investigación se encuentra en la preferencia por productos ecológicos versus los contaminantes después de presentar su precio para tomar una decisión al momento de comprar, que es el punto central de este estudio. La evidencia encontrada demuestra que, ante una elección que incluye beneficios al medio ambiente, las personas en su primera elección durante sus compras (que podrían ser las que efectúan cotidianamente cada que compran), no necesariamente se deciden por los beneficios ambientales; al contrario, optan por productos que tienen consecuencias al medio ambiente. Sin embargo, la sensibilidad al precio y el umbral de comparación de precios bajos frente a precios altos, incide directamente en el cambio en su preferencia por productos ecológicos, con un menor precio y por consiguiente un bajo costo en sus finanzas personales.
... In this way, collaborative ethnography is meant to provide a more ethical approach to research by conducting research for or with people rather than on them (Fluehr-Lobban, 2008). The motivations driving collaborative ethnography, as well as the solutions, are also found in other methodological paradigms, such as action research (Khanlou and Peter, 2005). Already used in computing fields such as Human-Computer Interaction, action research repositions researchers as facilitators whose role is to provide expertise while working with a community towards a social action (Hayes, 2014). ...
... Defining a community or population encourages researchers to resist universalizing data science findings, instead paying particular attention to who is and who is not included in the data under analysis (Costanza-Chock, 2018;Hargittai, 2015). Participatory action research (Khanlou and Peter, 2005) has grappled extensively with questions of participation, motivation, and accessibility, and can guide data scientists on challenging questions such as how to define a community, how to structure participation, and how to ensure representation of stakeholders across a community. ...
Frequent public uproar over forms of data science that rely on information about people demonstrates the challenges of defining and demonstrating trustworthy digital data research practices. This paper reviews problems of trustworthiness in what we term pervasive data research: scholarship that relies on the rich information generated about people through digital interaction. We highlight the entwined problems of participant unawareness of such research and the relationship of pervasive data research to corporate datafication and surveillance. We suggest a way forward by drawing from the history of a different methodological approach in which researchers have struggled with trustworthy practice: ethnography. To grapple with the colonial legacy of their methods, ethnographers have developed analytic lenses and researcher practices that foreground relations of awareness and power. These lenses are inspiring but also challenging for pervasive data research, given the flattening of contexts inherent in digital data collection. We propose ways that pervasive data researchers can incorporate reflection on awareness and power within their research to support the development of trustworthy data science.
... When artists did not agree or feel comfortable with parts of the consent process, they did not discuss them, despite the picture prompt. Although ethical review boards provide strict guidance on consent form content and procedures, a locally negotiated informed consent process which is relational and iterative is more appropriate in PAR (Khanlou & Peter, 2005). We suggest that the visual consent tool development process is used in PAR to discuss and establish a joint understanding about the research, its harms, and benefits, and to develop locally appropriate ethical guidance. ...
... Lewin brought forward the theory of Action Research in 1946, an approach to building a spiral research process that consists of cycles of planning (Susman & Evered, 1978). Then in the early 1970s, Participatory Research was developed to emphasize the participation of the researcher, as well as demonstrate a paradigm shift of "things" to "people" (Khanlou & Peter, 2005;Chambers, 1994). Based on the previous theories, Participatory action research emerged to present a process that researchers and the respondents have an equal dialogue platform, which also includes the process of social learning (Leeuwis, 2000). ...
The economic system of humanity is characterized by being unilateral,
that is, in one direction or sense, which in this case and obviously
is that of the sole and exclusive benefit of humans. Instead, we can
go towards a two-way economic system, taking into account the other
parties and also their benefit. In addition, this approach is based on
something as simple and original as exchange, the potlach that nature
has taught us but that we have forgotten because of the chrematistic
interests that dominate in this omnipresent and transcendental activity
of our existence.
Planning a new economic system may seem utopian, impossible, a chimera
or entelechy, even something crazy. But less is nothing, even if it is
only an idea, and especially if it is necessary, as the events and the
situation are developing towards where our current way of living and
producing is leading us. Although from its base or principle, the urgent
and peremptory cannot lead us to make the same mistakes or others that
may arise from wrong approaches, as often happens when we only think
of our own benefit. For all these reasons, this proposal for a new or
another economic model already starts from a different basis and can
be summarized in a single point, idea or approach for its development:
the multilateral nature of our activities and, specifically, of the
productive one. That is to say, having the planet from which we obtain
the resources, compared to the one-sidedness of the current system, in
which we only look for ourselves. By simply assuming this principle and
starting point, we would already be changing, improving and taking a
great step in the right existential direction
... Additional guardrails for this kind of research would be important, and could be sourced from the expertise of PAR researchers, together with former participants. Possible guardrails include ensuring continual engagement with ethical review boards and broader clinical research governance structures as the research evolves, establishing a charter that lists the agreedupon goals of the research as well as the responsibilities and commitments of researchers, and setting up an expert advisory board constituted of both researchers and local communities (see Fogg et al., 2022;Khanlou & Peter, 2005). Public Patient Involvement panels could be retooled for and/or integrated into these processes. ...
What happens when an emerging programme of medical research overlaps with a surging social movement? In this article we draw on the anthropological term 'chemosociality' to describe forms of sociality born of shared chemical exposure. Psychedelic administration in the context of recent clinical trials appears to have been particularly chemosocial in nature. We argue that one consequence is that psychedelic-assisted therapy (PAT) clinical research trials tend to breach key assumptions underlying the logic of causal inference used to establish efficacy. We propose the concept of dark loops to describe forms of sociality variously emerging from, and impacting participant experiences in, PAT trials. These dark loops are not recorded, let alone incorporated into the causal pathways in the interpretation of psychedelic trial data to date. We end with three positions which researchers might adopt in response to these issues: chemosocial minimisation where research is designed to attenuate or eliminate the effects of dark loops in trials; chemosocial description where dark loops (and their impacts) are openly and candidly documented and chemosocial valorisation where dark loops are hypothesised to contribute to trial outcomes and actively drawn upon for positive effect. Our goal is to fold in an appreciation of how the increasingly-discussed hype surrounding psychedelic research and therapeutics continues to shape the phenomena under study in complex ways, even as trials become larger and more rigorous in their design.
... The large number of students making contact during recruitment could have enabled arranging multiple workshop groups, potentially strengthening the knowledge base for this study. However, one group with ten students were perceived as sufficiently given the scope of the study and their breadth in characteristics as well as being able to safeguard the ethical aspects of a PAR design with the resources available (Khanlou and Peter 2005). ...
Students with disabilities encounter challenges through higher education and into employment. Despite holistic disability paradigms, higher education institutions continue to view disability as a human quality, providing support services through a medical lens. Through participatory action research, students with disabilities, in collaboration with university researchers co-create an intervention to promote the voices of students with disabilities in higher education. This study explores and describes the co-creation processes. Data were generated through group discussions, mapping, shared analysis, and shared writing through digital and in-person workshops, and shared documents. A reflexive thematic analysis resulted in the generation of five themes; enabling participation and including all voices; sharing and relating to each other; shifting from being a problem to being discriminated; and translating experiences into actions. The fifth and overall theme is the transformation of co-creators' understandings. The results indicate empowering processes of being awakened to discriminating structures and seeing own capabilities to make changes. ARTICLE HISTORY
... Participatory research is a general term used to describe research approaches that share a central philosophy of inclusivity and that acknowledge the value of engaging in research with those who stand to be affected by it (Bergold & Thomas, 2012). Recognizing that power differentials in conventional research approaches often mirror societal hierarchies, participatory research aims to create non-hierarchical relationships that value self-determination, in which researchers and participant community members share decisionmaking power to produce knowledge and engage in social action and meaningful solutions (Hall, 1992;Northway, 2010;Khanlou & Peter, 2005;Salsberg et al., 2017). It also maintains that the participant group ongoingly determines both how 'community' should be defined-that is, who will be included in research efforts, and how and to what degree they will participate (Northway, 2010). ...
Legacies of racism, discrimination, and oppression undergird health and social inequities for African Americans in the United States. In response, research practitioners across various sectors have increasingly employed participatory methods to collaborate with African Americans in addressing the causes and consequences
of structural racism. These approaches have been gradually gaining prominence in child welfare research and reform. This study explored the utility of Community Café—an evidence-based participatory model to engage community members who have had contact with the child welfare system (CWS) to inform a multilevel intervention aimed at reducing CWS contact and preventing placement into foster care. Eight Community Cafés were held over 4 days with 101 participants. Results indicated participants felt the café process provided a safe space for open communication, where their voices were heard and valued. Participants also viewed the cafés as an opportunity to meet, connect and share information and contribute to the common goal of building
and strengthening community. Implications for future research and practice for Community Cafés in collaborating with African American families in child welfare research are discussed.
... Therefore in addition to following national guidelines, we suggest future research to consult texts discussing the ethical issues involved (e.g. fair recruitment practices, assessment of the research risk-benefit ratio) in participatory research (Khanlou and Peter, 2005) to ensure that participants are aware of research practices and are not harmed. ...
In animal sheltering and protection, One Welfare initiatives include supporting people who have difficulty providing for their animals because of limitations in their physical or mental health, income or housing. However, little research has focused on the actual work that such initiatives involve for animal shelter staff and animal protection officers. We used institutional ethnography to explore how such work activities occur in frontline practices and to better understand how this work is coordinated. Methods included ethnographic observation of animal protection officers and animal shelter staff, document analysis, plus focus groups and interviews with staff, officers and managers. In cases where an animal’s care was deficient but did not meet the standard for legal intervention, officers provided people with supplies for their animals, referred them to low-cost or free veterinary care, and provided emergency animal boarding. This work was time-consuming and was sometimes done repeatedly without lasting effect. It was often constrained by animal owners’ limited housing, cognitive decline, mental health and other factors. Hence, improving the animal’s welfare in these ways was often difficult and uncertain. Although officers and animal shelter staff are increasingly expected to provide and record supports given to vulnerable owners, standard procedures and criteria for intervention have not yet evolved; hence the work is largely left to the judgement and ingenuity of personnel. In addition, the necessary collaboration between animal welfare workers and human social services staff (e.g. social workers, supportive-housing staff) is made difficult by the different expectations and different institutional processes governing such activities. Further work is needed to assess how meeting the needs of both animals and people could be strengthened in challenging situations. This might include sharing best practices among officers and further ethnographic analysis of animal protection services, how they interact with other services, and how One Welfare initiatives actually affect animal care. Institutional ethnography provides a way to study the organisational processes that shape and constrain care for animals, and its explicit focus on actual work processes provides insights that may be missed by other approaches.
... This is relevant because it involves bringing the people who faced the concerned problem together to produce knowledge that will emancipate them out of their predicaments. PR enables both the researchers and the participants to get equally involve in the research process by jointly identifying the problem and ways to resolve it (Khanlou & Peter, 2005). That is, PR values the involvement and participation of all the concerned stakeholders in the research process. ...
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We seize this opportunity to thank them for their great collaboration. The Editorial Board is composed of renowned people from across the world. Each paper is reviewed by at least two blind reviewers.
We will endeavour to ensure the reputation and quality of this journal with this issue.
... One process of conducting ethical research is ensuring that the participants have full knowledge of the purpose of the research and if there is any possible risk of participating in the research, all before participating in the project. The research participant is allowed to grant approval to participate in the research and retains the right to withdraw from the research project at any point during the procedure (Khanlou and Peter, 2005). ...
Purpose: The focus of this paper is to examine what is action research, how it is different from scientific research and how each can contribute to the body of knowledge, while emphasizing that one does not replace the other. Design/Methodology/Approach: The trajectories of action research are reviewed in this paper. Research Findings: Findings suggest action research brings about significant contributions to social change. Further, action research investigators are in a prime position to determine the best method for action research depending on the research issue(s). Research Limitations/Implications: This paper is limited to a general review of action research in the broad fields of education, science, and social science. Nonetheless, this paper argues that the continued growth of action research should strengthen the position and contribution of action research towards knowledge creation and extension. Originality/Value: This paper sheds light on the trajectories, current position, and future of action research. Further, some comparisons with general scientific research are offered.
... In addition, it has original figures that exemplify the measures described to make it easier to put into practice. The design of the toolkit was based on a participatory process with health professionals who work with children with CP in their work settings and caregivers [38,39]. Understanding their previous knowledge, beliefs and resources about the nutritional assessment and feeding care of children with CP was necessary. ...
Background:
Nutritional status assessment (NSA) can be challenging in children with cerebral palsy (CP). There are high omission rates in national surveillance reports of weight and height information. Alternative methods are used to assess nutritional status that may be unknown to the healthcare professionals (HCP) who report these children. Caregivers experience challenges when dealing with feeding problems (FP) common in CP. Our aim was to assess the difficulties in NSA which are causing this underreport and to create solutions for registers and caregivers.
Methods:
An online questionnaire was created for registers. Three meetings with HCP and caregivers were held to discuss problems and solutions regarding NSA and intervention.
Results:
HCP mentioned difficulty in NSA due to a lack of time, collaboration with others, equipment, and childrens' motor impairment. Caregivers experienced difficulty in preparing nutritious meals with adapted textures. The creation of educational tools and other strategies were suggested. A toolkit for HCP was created with the weight and height assessment methods described and other for caregivers to deal with common FP.
Conclusions:
There are several difficulties experienced by HCP that might be overcome with educational tools, such as a toolkit. This will facilitate nutritional assessment and intervention and hopefully reduce underreporting.
... Students will be presenting the focus group stories to the Hill District community shortly. Future projects include participatory action research in which both community and university members will engage with and organize Voices in the Hill studies and make sense of their findings (Khanlou & Peter, 2005;Minkler, 2000) as well as all parties sharing stories with policymakers. ...
Narrative interviews documenting individual and community trauma in the Hill District of Pittsburgh emerged from a capstone undergraduate community engagement psychology course that was a joint project between Duquesne University and FOCUS Pittsburgh. The interview project, which we gave the name Voices in the Hill, sought life stories and existential meaning-making of people involved with the Hill District of Pittsburgh, a formerly flourishing African-American community now mired in poverty due to a juncture of sociological, historical, and political forces. Themes that emerged from the interviews included abuse, mental health issues, and failures of the larger society. With the facilitation of FOCUS Pittsburgh, we discuss how these traumatized people created existential meaning and empowerment in their lives. We explore how their individual stories emerged from larger societal processes such as racism, discrimination, and loss of community, as well as other impacts of “root shock.” We also share the moving impact of the work on students.
... Participatory action research (PAR) is increasingly recognised as an appropriate approach to use to enhance the health and well-being of citizens living in disadvantaged circumstances. PAR has the potential to empower citizens regarding issues that affect them by engaging them in shared learning and action in an attempt to co-produce better worlds (Bradbury et al., 2019;Cornwall & Jewkes, 1995;Khanlou & Peter, 2005). The research outcomes are often local and therefore generalisation and scalability of outcomes are generally low (Greenhalgh et al., 2016). ...
The use of vlogs is promising in participatory action research (PAR) that aims to enhance the health and well-being of citizens. Vlogs have the potential to reach a wide audience, transcending the local scale of PAR. This article aims to explore the value of co-creating vlogs by investigating two exploratory studies involving adolescents and women from disadvantaged neighbourhoods. We reflected on the co-creation of vlogs by community members and professionals. The results show that co-creating vlogs enabled meaningful engagement of citizens living in vulnerable circumstances and promoted shared learning. Community members who were not involved in the vlog creation were critical of the vlogs. However, watching the vlogs stimulated discussion and reflection. Therefore, dissemination of vlogs in a setting guided by a professional seems to have the potential to facilitate shared learning. Despite the popularity of vlogs, this study highlights the need to carefully consider the use of vlogs in relation to a study’s aims and to respond to (ethical) concerns.
... The underpinnings of PAR can be referred to a variety of fields, such as action research, education, critical social sciences, and international development (Kagan, 2012;Khanlou & Peter, 2005). PAR is particularly suited to nursing concerns because of its roots in the social sciences and organizational transformation literature. ...
Purpose
Authentic client-centered practice is integral to positive health-care outcomes. This study examined facilitator perspectives of the See Me as a Person (SMAAP) relationship-based health-care curriculum.
Methods
Qualitative phenomenological interviews were conducted with five facilitators of the SMAAP curriculum. The principal question and sub questions explored the facilitation and teaching methods, perceived impact of the curriculum, and the impact on health-care practice.
Findings
The concepts in the SMAAP curriculum are translatable into practice and may improve health care; organizational culture, leadership, and time constraints influence impact.
Conclusion
Relationship-based practice training can positively affect health-care delivery. Practitioners must be dedicated to the learning process; implementation should go beyond short-term training.
... The underpinnings of PAR can be referred to a variety of elds, such as action research, education, critical social sciences, and international development (Kagan, 2012;Khanlou & Peter, 2005). PAR is particularly suited to nursing concerns because of its roots in the social sciences and organizational transformation literature. ...
Participatory action research (PAR) is a method of inquiry that promotes a collaborative approach to knowledge creation. This article examined areas of research interest that included PAR methods, highlighting the areas of improvement that such approaches might offer to researchers and scientists in the nursing field. Among the 20 included studies, participatory concepts are more likely used to direct research design than to select participants. About two-thirds of the studies reviewed used PAR principles in designing projects. Although only a few research collaborative efforts involved partners in selecting participants, 70% involved participants in data gathering. Participatory approaches to data processing and interpretation were found in over 60% of articles assessed across all content categories. Approximately half of the studies included suggestions for participatory implementation approaches; a quarter discussed participatory ways to disseminate results. The findings demonstrate how researchers are incorporating PAR principles into a variety of areas of nursing research. Promises to fully include participants and promises of reciprocal benefit are essential in order to pursue meaningful PAR.
... In Poland, the publications of educationalists successfully undertaking participatory action research have become available in the recent years as well (Červinková, 2012;Gołębniak, Červinková, 2010Gołębniak, Červinková, , 2013. There are more studies by foreign authors available, among others: Khanlou (2005), Oden, Hernandez, Hidalgo (2010), Levanon (2011). This subject matter is evidently connected both with my scientific background and with the above mentioned social activity. ...
... Participatory Action Research (PAR) can be viewed as a way of 'bringing participation into action research' (Elvin andLevin, cited in Khanlou andPeter 2005, p. 2234). In this project, PAR was the method used to explore the feasibility of the process of co-production discussed earlier, since the outcomes of a PAR methodology should be focused on action and developing new knowledge with emancipatory results for the community (Khanlou and Peter 2005). ...
The challenge of housing is increasingly recognised in international policy discussions in connection to the processes of migration, climate change, and economic globalisation. This book addresses the challenges of housing and emerging solutions along the lines of three major dynamics: migration, climate change, and neo-liberalism. It explores the outcomes of neo-liberal »enabling« ideas, responses to extreme climate events with different housing approaches, and how the dynamics of migration reshape the urban housing provision in a changing world. The aim is to contextualise the theoretical discourses by reflecting on the case study context of the eleven papers published in this book. With forewords by Raquel Rolnik (University Sao Paulo) and Mohammed El Sioufi (UN-Habitat).
... Lincoln and Guba (1985) suggest that a client's commitment to a project needs to be built on the notion that content is negotiated, and that this commitment is later either formalised explicitly in a written contract or informally communicated. Khanlou and Peter (2004), following basic principles of clinical research, contend that an action researcher should obtain informed consent from those participating in a project. ...
Action research (AR) involves one or more researchers and a client organisation. Many guidelines for and reports of the research method have been published. However, the ethical issues associated with AR have been largely neglected. Our review of the AR literature found that ethical dilemmas and their resolution are rarely and inconsistently reported. Stimulated by this neglect and our personal experiences, we aim to raise awareness and understanding about the ethics of planning, conducting and reporting AR. We identify and discuss four issues of concern that merit specific ethical attention when conducting AR: collaboration, competence, persistence and consent. We draw on these four issues in an analysis that augments the principles and criteria for canonical AR (CAR), recently reified as Integrated Action Research (IAR). Our guidance includes an additional principle of AR and 10 associated criteria to address the ethics of AR participation.
... While the ethical challenges associated with these collaborative approaches to research have yet to be seriously explored in translation and interpreting studies, scholars working in other areas have begun to do so (e.g. Khanlou and Peter 2005;Brydon-Miller 2008). ...
This chapter presents an overview of the current state of research ethics in translation and interpreting studies. The first section addresses theoretical considerations related to translation, language, and power, which inform contemporary discussions of ethics in the field. The issues raised include the prevalence of Western bias in dominant research paradigms, the positionality of the researcher and questions of power and privilege, and the representation of linguistic difference in acts of translation in research contexts. The chapter then discusses institutionalized practices designed to protect human subjects and to minimize researcher bias throughout the research process, from planning to analysis and dissemination of results. The chapter concludes with a discussion of future directions in translation- and interpreting-related research ethics, which include the roles that translation and interpreting play in conducting ethical research in neighboring disciplines as well as ethical questions that arise in relation to the dissemination of research results and the sharing of research data.
... This was mitigated through up-front discussion with the team about the level of comfort with a participatory approach to data collection and analysis, rather than using traditional qualitative research methods such as numeric identifiers to preserve confidentiality. Other common ethical principles that apply to PAR include informed consent, favourable risk-benefit ratio, and respect for participants, which were all met by this study [33]. Ethical clearance was obtained from both the University of Calgary and Mbarara University of Science and Technology. ...
Background:
Digital storytelling (DST) is a participatory, arts-based methodology that facilitates the creation of short films called digital stories. Both the DST process and resulting digital stories can be used for education, research, advocacy, and therapeutic purposes in public health. DST is widely used in Europe and North America, and becoming increasingly common in Africa. In East Africa, there is currently limited in-country DST facilitation capacity, which restricts the scope of use. Through a Ugandan-Canadian partnership, six Ugandan faculty and staff from Mbarara University of Science and Technology participated in a pilot DST facilitation training workshop to enhance Ugandan DST capacity.
Objective:
This Participatory Action Research (PAR) study assessed the modification of DST methodology, and identified the future potential of DST in Uganda and other East African settings.
Methods:
In the two-week DST Facilitator Training, trainees created their own stories, learned DST technique and theory, facilitated DST with community health workers, and led a community screening. All trainees were invited to contribute to this study. Data was collected through daily reflection and journaling which informed a final, post-workshop focus group where participants and researchers collaboratively analyzed observations and generated themes.
Results:
In total, twelve stories were created, six by trainees and six by community health workers. Three key themes emerged from PAR analysis: DST was a culturally appropriate way to modernize oral storytelling traditions and had potential for broad use in Uganda; DST could be modified to address ethical and logistical challenges of working with vulnerable groups in-country; training in-country facilitators was perceived as advantageous in addressing community priorities.
Conclusion:
This pilot study suggests DST is a promising methodology that can potentially be used for many purposes in an East African setting. Building in-country DST facilitation capacity will accelerate opportunities for addressing community health priorities through amplifying local voices.
... This is relevant because it involves bringing the people who faced the concerned problem together to produce knowledge that will emancipate them out of their predicaments. PR enables both the researchers and the participants to get equally involve in the research process by jointly identifying the problem and ways to resolve it (Khanlou & Peter, 2005). That is, PR values the involvement and participation of all the concerned stakeholders in the research process. ...
This study aims at reconstructing an online classroom community project as an alternative to physical collaborative teaching-learning process by identifying the challenges militating against the implementation of an online classroom community project and the possible solutions to mitigate the challenges posed by the COVID-19 pandemic. Ubuntu was used to theorise the study within the Transformative Paradigm (TP) and Participatory Research (PR) lens as a research design. Ten participants were selected among 810 first-year students who were twice given online community project assessments during the COVID-19 lockdown. The participants were selected using convenient sampling technique because, as at the time of the study, the they are under level 3 lockdown. Thematic analysis was adopted to serve the current research objectives. The study found out some challenges such as: students struggle to locate group members and unstable internet access and electricity shortage mitigate their learning. The study also revealed that tolerance among group members and consistent utilisation of online community project are the possible ways to implement online classroom community project in University classrooms more effectively.
La recherche-action participative (RAP) est une approche qui permet de combiner les réflexions et les efforts de différents acteurs, universitaires, acteurs locaux et experts externes, afin de chercher des solutions à des problèmes concrets tout en produisant des réflexions applicables dans un contexte plus large. Cet article émet l’hypothèse que la RAP est une méthode de recherche pertinente en milieu rural mexicain et applicable au tourisme alternatif en raison du potentiel de transformation sociale des processus participatifs. L’étude de cas réalisée à Yokdzonot (Yucatán, Mexique) avec la coopérative Zaaz Koolen Haa illustre ce point de vue tout en mettant en relief les défis d’une telle approche. Un travail de cinq ans, mobilisant une centaine d’acteurs, a été mené dans cette communauté et a permis d’expérimenter différents outils de la RAP, d’aboutir à des résultats à court et moyen terme comportant des diagnostics, des prises de décision et des changements organisationnels, ainsi que de produire des projections pour la gestion de l’initiative de tourisme alternatif. Ce projet de RAP a permis entre autres de valoriser les vertus des communautés d’apprentissage en contextes interculturels. Les difficultés rencontrées sont attribuées en partie au contexte particulier de la communauté dans sa relation au tourisme, mais elles permettent aussi d’évoquer des défis récurrents dans le cadre de la RAP.
The ethical guidelines for the American Evaluation Association and the principles of community-based participatory evaluation both state the importance of equitable stakeholder involvement. Regardless of the evaluation approach, however, evaluators are often confronted with gatekeepers, or those who control the access to stakeholders, information, or resources. Gatekeepers limit both the participation of key community members and, therefore, the exchange of relevant information related to the evaluation—a process called gatekeeping. Little research attention has been placed on studying gatekeeping, resulting in a dearth of knowledge about the influence of gatekeeping on stakeholder-engaged evaluations and social-structural dynamics that potentially perpetuate gatekeeping practices. In this article, we propose a gatekeeping influence theory grounded in the findings from 14 interviews. With a constructed theory of gatekeeping, we document the emergent social-structural and relational dynamics involved in stakeholder-engaged evaluation, with a focus on evaluations that include community partners and members.
Este trabajo forma parte de un proyecto financiado por el Ministerio español de Economía y Competitividad y el Fondo Europeo de Desarrollo Regional (FEDER) en el que investigadores de cuatro universidades españolas acompañan a cuatro escuelas de Primaria a problematizar, cambiar y mejorar sus prácticas curriculares. Se plantea si la propia participación en los procesos democráticos e inclusivos mejora la disposición del alumnado al aprendizaje a través de herramientas propias de IAP. Se trata de un estudio de caso múltiple articulado a través de 4 casos. El estudio ha sido realizado en centros escolares de las siguientes regiones españolas: Murcia (C1), Valencia (C2), Madrid (C3) y País Vasco (C4). Las escuelas seleccionadas estaban inmersas en un proceso de investigación acción participativa. Tras una breve presentación del proceso se presentan las herramientas participativas utilizadas en diferentes ocasiones por el profesorado, el alumnado, las familias y los agentes sociales, dentro del proceso de investigación acción participativa. A partir de esta triangulación de herramientas y participantes, se observa el impacto positivo del uso de estas herramientas cualitativas y participativas en los procesos de enseñanza-aprendizaje del alumnado. Los resultados se centran en la satisfacción con la metodología IAP y como esta fomenta el aprendizaje de contenidos curriculares.
In the migrant journey across the Mediterranean Sea, thousands have perished and many more have gone missing. Behind every missing migrant is a community awaiting closure and demanding answers. This paper draws from a US- and Tunisia-based Participatory Action Research project of visual-digital storytelling to suggest how visual and spatial questions may inform and contribute to action and social justice work, aiming to scale down the Mediterranean Sea to the personal. We highlight conceptual and procedural facets of our work, including an exhibition and an online platform, to illustrate the triple concerns of visuality, spatiality and social justice.
Purpose
Literature regarding recovery has focussed on diagnoses such as schizophrenia, with few papers focussing on borderline personality disorder (BPD). This is a significant area in need of change because a lack of research concentrating on recovery from BPD could be seen to perpetuate the view that recovery from this condition may not be possible. Recovery Colleges (RCs) in the UK began in 2009and aim to offer co-produced and co-facilitated psychoeducational courses to encourage recovery and enable people to develop skills and knowledge so they become experts in the self-management of their difficulties. Given the gaps within the recovery literature, it is unclear how Recovery Colleges can support recovery for people diagnosed with BPD. The purpose of this study was to explore the impact of a Recovery College course for people diagnosed with BPD.
Design/methodology/approach
Using participatory methods, this paper aims to explore the question of what personal recovery looks like for people with BPD and how this may prove useful in developing future practice in RCs. Qualitative feedback data was collected from 51 managing intense emotions courses delivered to 309 students using a patient reported experience measure between Autumn 2015 and Autumn 2021.
Findings
The results of this study indicate that people with BPD can experience recovery, whilst still experiencing symptoms, as long as they receive appropriate co-produced, recovery-orientated support and services.
Practical implications
Further research in this area could help shape future clinical practice by embedding a recovery-focussed programme into community services.
Originality/value
Literature regarding recovery has focussed on diagnoses such as schizophrenia withfew papers focussing on BPD. This is an area in need of change because a lack of research on recovery from BPD could be seen to perpetuate the view that recovery from this condition may not be possible. RCs offer co-produced and co-facilitated psychoeducational courses around recovery, enabling people to develop skills and knowledge to become experts in the self-management of their difficulties. Given the gaps within the recovery literature it is unclear how RCs can support recovery for this group of service users.
Robin Peirce makes several key observations and arguments in the paper Interrupting Pathways to Health Inequities in Citizen Science Research. Perhaps most importantly, he sheds light on how seemingly neutral citizen science (CS) interventions sometimes inadvertently end up reproducing structural inequities in society. To exemplify, he uses a case originally presented by Rachel Moran concerning students who switched to remote learning during the coronavirus disease 2019 pandemic. Moran’s study shows that disadvantaged students faced more obstacles to distance learning than other students and hence that the burdens of this shift did not fall equally on all students. Hereby, a neutral beneficial innovation inadvertently ended up perpetuating and compounding existing inequities.
Pierce should be commended for drawing our attention to this important fact.
However, unfortunately, he does not stop at this point, but goes further and, in my opinion, too far by arguing that CS itself imply moral obligations to reduce social inequities. He writes that CS should not: ‘be “equity neutral” in a society where structural or systemic inequities are present. It must be equity-promoting’ [(Peirce, 2022), p. 1].
Action research and grounded theory are popular methodologies in qualitative health research. The aim of this structured narrative review was to develop a contemporary understanding of combining action research and grounded theory. We searched Web of Science Core Collection and Google Scholar for empirical peer-reviewed articles that used both methodologies in a health- or healthcare-focused study. We identified 28 studies published from 2004 to 2022 that combined various types of action research and interpretations of grounded theory in innovative ways. Our results highlighted that combining the two methodologies is feasible and growing in use. Benefits identified by the study authors were opportunity to work with participants, methodological compatibility, enhancement of action, theoretical understanding, and perceived legitimacy of research processes and outputs. Key challenges were compromising on both methodologies, and conceptual and practical limitations. Our findings also highlighted that important synergies and tensions exist between the two methodologies, but tensions are not insurmountable. We suggest a combined action research and grounded theory approach underpinned by pragmatism as a methodologically congruent path forwards. In an academic environment which increasingly implores health researchers to translate new-found knowledge to timely real-world change, innovative approaches to research methodologies and design are required.
Design ManifesT.O. 2020 is a Participatory Action Research project currently underway in Toronto, Canada and is working with communities to uncover stories of grassroots placemaking and community building done through creative practice. An unexpected discovery during data collection highlighted how communities are still being left out of decision-making processes that directly affect their collective values and living conditions and are being disrespected by designers and researchers — exposing very large gaps in the education of designers in terms of values-based learning, design ethics, and informed methods for working with communities. This paper interrogates design pedagogy and practice in order to stimulate further discourse and investigation into how to successfully integrate ethical and responsible protocols into design curriculum to support co-design practices where social justice and equity becomes normalized in practice. In other words: giving students the tools to “work with, not for” communities. Demonstrating social conscience is ethically desirable in design education but if students are not given the tools required to work with communities through respectful and collaborative processes then we are training the next generation of designers to continue a form of hegemony in design practice that is undesirable.
The paper examines the concept of participation in co‐design practices with children and youth. Rooted in Participatory Design and Participatory Action Research frameworks, the paper draws from multi‐disciplinary literature to survey existing definitions of the relationships, roles, and types of human interactions in participatory co‐design. The paper advocates for the active role of children and youth in the co‐design process and presents models of youth participation. The paper highlights the importance of understanding and clearly communicating various degrees of participation, with the ultimate goal of empowering youth and involving them in brainstorming, planning, decision‐making, and interpretation stages of the design process. We introduce the concept of conscious co‐design and the need to reflect on the design process at a meta level in Participatory Design and Participatory Action Research.
Background
For education to be underpinned deeply by the principles of inclusion and interculturality, there is a need for school to be reconceptualised as an institution which is strongly linked to its territory and capable of being an agent of social change. As part of a wider project exploring processes of democratic participation for social transformation, this article reports on a research study that supported schools to review and reformulate their educational practices through a school-based Participatory Action Research (PAR) project.
Purpose
The study sought to support participating schools to examine, review and transform practices by using participatory social diagnosis (PSD) strategies. In particular, it aimed to explore the ways in which PSD practices enabled the review of practices linked to territory, encouraging a process of transformative participation towards inclusion.
Method
Through participatory projects across four infant (3- to 6-year-old pupils) and primary (6- to 12-year-old pupils) schools in different locations in Spain, case studies were developed to examine participation and community building in the context of each case. Data, including recordings of focus group sessions, were transcribed and analysed qualitatively, using content analysis techniques.
Findings
Across the four case studies, analysis suggested that, in a variety of ways, spaces and times were created for shared reflection, and participatory techniques generated creative forms available to the entire community to contribute to the analysis and transformation of practices. The findings indicated that PAR techniques had enabled a means of participation that led to a process of circulation and collective production of knowledge, allowing a rethinking of inclusion and territory.
Conclusions
: Our small scale, in-depth study highlights the implications of opening up participatory spaces with regard to the concept of community, social change and territory. This research may provide insights for future researchers and school communities with similar goals of changing educational practices to address participation from an inclusive and intercultural approach.
This thesis investigates how context serves as a source for teacher learning. The complexities of teaching are growing and so is the need for teacher life long learning. Recent studies suggest that professional learning can be understood as the result of an array of experiences, but only if existing ideas and practices are being challenged through these experiences. If indeed professional learning emerges out of challenge, then it is relevant to take a closer look at teachers’ contexts, the kinds of challenges these contexts accommodate, and the ways they are perceived and processed by teachers. Building on the principles of Participatory Action Research, this exploratory study addresses the question of how these processes can be understood: how teacher contexts can work as a source for teacher learning. The participants were teachers who followed a master’s programme. In the first study their reflective work was explored to identify which context factors had served as a source for their professional learning. In the second study, these identified factors were used to co-construct a reflective tool to prompt and capture teachers’ engagement with context factors. The master’s students then had their workplace colleagues engage with the tool and Study 3 explores the data that were generated through this deployment. The results suggest that teachers’ contexts can be divided into three domains: a personal practice domain, a social domain, and a theoretical domain, and that confrontations within these domains can be the result of both planned and unplanned events. Teachers appear to have a preference for unplanned learning that emerges from their own personal experiences. The thesis examines the mechanisms behind this, and it explores how teachers might be stimulated to expand the reference points they tap into. The implications of these findings are discussed at macro, meso and micro level.
Community engagement (patient and public involvement) is gaining prominence in health research worldwide. But there remains limited ethical guidance on how to share power with communities in health research priority setting, particularly that which has been informed by the perspectives of those being engaged. This article provides initial evidence about what they think are important ways to share power when setting health research projects' topics and questions. Twenty-two people with lived experience, engagement practitioners, and members of the public who have been engaged in health research in the United Kingdom and Australia were interviewed. Thematic analysis identified 15 key ways to share power, many of which are relational. This study further demonstrates that tensions exist between certain ways of sharing power in health research priority setting. More research is needed to determine how to navigate those tensions.
This thesis investigates how context serves as a source for teacher learning. The complexities of teaching are growing and so is the need for teacher life long learning. Recent studies suggest that professional learning can be understood as the result of an array of experiences, but only if existing ideas and practices are being challenged through these experiences. If indeed professional learning emerges out of challenge, then it is relevant to take a closer look at teachers' contexts, the kinds of challenges these contexts accommodate , and the ways they are perceived and processed by teachers. Building on the principles of Participatory Action Research, this exploratory study addresses the question of how these processes can be understood: how teacher contexts can work as a source for teacher learning. The participants were teachers who followed a master's programme. In the first study their reflective work was explored to identify which context factors had served as a source for their professional learning. In the second study, these identified factors were used to co-construct a reflective tool to prompt and capture teachers' engagement with context factors. The master's students then had their workplace colleagues engage with the tool and Study 3 explores the data that were generated through this deployment. The results suggest that teachers' contexts can be divided into three domains: a personal practice domain, a social domain, and a theoretical domain, and that confrontations within these domains can be the result of both planned and unplanned events. Teachers appear to have a preference for unplanned learning that emerges from their own personal experiences. The thesis examines the mechanisms behind this, and it explores how teachers might be stimulated to expand the reference points they tap into. The implications of these findings are discussed at macro, meso and micro level.
Black Americans are more likely than other racial/ethnic groups to rely on spiritual and religious resources for mental health support. As such, counselors must seek unique ways to reach and understand Black communities. This article provides an overview of Black Americans' help‐seeking behaviors, the significance and culture of the Black Church, and a framework for counselors and counseling researchers to form effective partnerships to conduct community‐based participatory research initiatives that will produce empirical outcomes and promote culturally responsive mental health and wellness programming in Black communities.
The research and publication of this study were funded by Status of Women Canada’s Policy Research Fund. This document expresses the views of the authors and does not
Diverse claims have been made for and about action research in a variety of contexts. In this article, we first trace the origins of this approach to Kurt Lewin and provide a synopsis of his views. We then compare Lewin's views on action research with those of contemporary exponents. In the third section, we review and systematize the claims of 11 action researchers to determine the extent to which their claims constitute a shared conception. While most authors characterize action research as a methodology, a few also attempt to link action research to a particular interpretation or theory of social science. We build on this distinction in the final section and distinguish a weak from a strong version of action research, concluding that, at this time, neither version enjoys the status of a paradigm.
Participatory action-research, developed primarily by peoples of the Third World, combines adult education with investigation and sociopolitical action. With the goal of personal and social transformation it builds on the capacity of people to think and work together for a better life and the equitable sharing of knowledge, skills and resources so as to support fair social structures, which, ultimately, are health determinants.
Participatory action research (PAR) is a collaborative approach to inquiry for education and social change that is gaining increasing prominence in health education. This case study explores the use of PAR by and with a community of people with disabilities in addressing a polarizing issue in that community: death with dignity or physician-assisted suicide legislation. Following a brief review of the debate within the community about this issue and the goals, methods, and findings of this project, the authors examine four key ethical challenges. These are dilemmas in issue selection when the community is deeply divided over a problem area, inclusion and exclusion in study team makeup and sample selection, insider/outsider issues, and how best to use findings in ways that can unite and strengthen the community. The implications of these issues for health educators and others engaged in community-based PAR efforts are presented.
For serious practitioners of participatory action research, it is helpful to identify its principles. This paper outlines some principles of participatory action research in Australia that have been derived from theory and practice in both Western and cross-cultural contexts. Participatory action research is identified with critical social theory and is exemplified with two perspectives from participatory action research in Northern Australian Aboriginal communities.
Action Research seeks a more effective method of organizational decision-making involving the whole organization in identifying needs, solving problems, laying out plans, and implementing decisions. Its principal components are an Action Research Group, composed of organizational members, and an Action Researcher-an outside consultant skilled in directing group decision-making and coordinating responsive action. This paper defines the theoretical characteristics of Action Research and the underlying processes by which it is applied.
This article describes the deficiencies of positivist science for generating knowledge for use in solving problems that members of organizations face. Action research is introduced as a method for correcting these deficiencies. When action research is tested against the criteria of positivist science, action research is found not to meet its critical tests. The appropriateness of positivist science is questioned as a basis for judging the scientific merits of action research. Action research can base its legitimacy as science in philosophical traditions that are different from those which legitimate positivist science. Criteria and methods of science appropriate to action research are offered.
This text offers a comprehensive resource on the theory and application of community based participatory research for health. The authors provide information on a variety of topics including planning and conducting research, working with communities, promoting social change, and core research methods. This book also contains an appendix of tools, guides, checklists, and sample protocols. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Research strategies which emphasize participation are increasingly used in health research. Breaking the linear mould of conventional research, participatory research focuses on a process of sequential reflection and action, carried out with and by local people rather than on them. Local knowledge and perspectives are not only acknowledged but form the basis for research and planning. Many of the methods used in participatory research are drawn from mainstream disciplines and conventional research itself involves varying degrees of participation. The key difference between participatory and conventional methodologies lies in the location of power in the research process. We review some of the participatory methodologies which are currently being popularized in health research, focusing on the issue of control over the research process. Participatory research raises personal, professional and political challenges which go beyond the bounds of the production of information. Problematizing 'participation', we explore the challenges and dilemmas of participatory practice.
A comparative analysis of community participation in urban and agricultural programs, and health programs in Latin America suggests that the promotion of community participation was based in all cases on two false assumptions: the belief that the traditional values of the poor were the main obstacle for development and for health improvement; and the idea that the poor were incapable of organizing themselves. A country by country examination indicates that health participation programs in Latin America, in spite of promotional efforts by international agencies, have not succeeded. Then, the article discusses the political objectives behind international support for these programs. It is argued that, through symbolic participation, international agencies had two purposes in mind: the legitimization of low quality care for the poor, also known as primary health; and the generation of much needed support from the masses for the liberal democracies and authoritarian regimes of the region.
These guidelines, from the Council of International Organizations of Medical Sciences, describe the proper application of the principles of the Declaration of Helsinki and focus particularly on research sponsored by or initiated in developed countries and carried out in developing countries.
Action research has enjoyed increasing popularity across a wide variety of disciplines including nursing. Action research was designed specifically to bridge the gap between theory, research and practice and incorporates both humanistic and naturalistic scientific methods. As such, action research is a highly compelling method for nursing. However, action research does not easily lend itself to definition. A variety of approaches, definitions and uses have emerged since it was created by Kurt Lewin and have given rise to much debate within social and behavioural sciences. This confusion has carried over into nursing literature without any systematic identification of or debate about the core characteristics of action research or the multitude of approaches or uses that have come to be associated with this method. Thus this paper addresses the central characteristics, three major approaches to action research that exist today and how action research has been used and can be used in nursing.
Many believe that informed consent makes clinical research ethical. However, informed consent is neither necessary nor sufficient for ethical clinical research. Drawing on the basic philosophies underlying major codes, declarations, and other documents relevant to research with human subjects, we propose 7 requirements that systematically elucidate a coherent framework for evaluating the ethics of clinical research studies: (1) value-enhancements of health or knowledge must be derived from the research; (2) scientific validity-the research must be methodologically rigorous; (3) fair subject selection-scientific objectives, not vulnerability or privilege, and the potential for and distribution of risks and benefits, should determine communities selected as study sites and the inclusion criteria for individual subjects; (4) favorable risk-benefit ratio-within the context of standard clinical practice and the research protocol, risks must be minimized, potential benefits enhanced, and the potential benefits to individuals and knowledge gained for society must outweigh the risks; (5) independent review-unaffiliated individuals must review the research and approve, amend, or terminate it; (6) informed consent-individuals should be informed about the research and provide their voluntary consent; and (7) respect for enrolled subjects-subjects should have their privacy protected, the opportunity to withdraw, and their well-being monitored. Fulfilling all 7 requirements is necessary and sufficient to make clinical research ethical. These requirements are universal, although they must be adapted to the health, economic, cultural, and technological conditions in which clinical research is conducted. JAMA. 2000;283:2701-2711.
Having an Institutional Review Board (IRB) review and monitor the use of human subjects is now fundamental to ethical research. Yet social scientists appear increasingly frustrated with the process. This article aims to assist evaluators struggling to understand and work with IRBs. The author theorizes why IRBs frustrate and insists there is only one remedy: We must accept the legitimacy of IRB review and (a) learn more about IRB regulations, imperatives, and the new pressures on them; and (b) educate IRBs about social scientific methodologies and empirically demonstrable risks. A research agenda and tips are offered.
This paper contributes to an understanding of the political and ethical aspects of action research (AR).
Action research is growing in popularity in nursing and health care as a means of changing practice and generating new knowledge. As a methodology, AR relies on a close collaborative working relationship between researcher and participants, but this close relationship is also the source of political and ethical problems faced by researchers and participants.
We argue that action researchers and participants working in their own organizations should be clear about the extent to which they are engaged in a political activity, and that AR does not offer the same ethical guarantees concerning confidentiality and anonymity, informed consent, and protection from harm as other research methodologies (both quantitative and qualitative). This argument is illustrated by our experiences of participation in an AR study.
We outline three areas where AR is implicitly political, and three areas where it is ethically problematic. We recommend that researchers and participants recognize, discuss and negotiate these problematic areas before starting their work.
This paper addresses the education of graduate nursing students in mental health promotion in multicultural settings. First an overview of the historical development of health promotion theory in Canada is presented. Emerging concepts in mental health promotion are then considered. Referring to a graduate course on youth and mental health promotion, course design, which draws from across disciplines and recognizes the complexities in mental health promotion practice in multicultural settings, is illustrated. Under a mental health promotion perspective healthy development is recognized to arise from the interaction between people and systems in society, providing a systems-based understanding of the interplay between culture and health. The course's underlying threads, consisting of youth development and mental health, culture, and integration of learning through an intersectional perspective, and its related substantive content and process are discussed. It is concluded that by fostering students' critical awareness of intersections (for example, gender, life stage, migrant and racialized status), the growth and development of youth from diverse cultural backgrounds can be contextualized within existing support, or access barriers to, systems in multicultural societies.
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