Participatory Action Research Framework Research Articles

An interdisciplinary framework of youth participatory action research informed by curricula, youth, adults, and researchers.

Rarely are youth voices incorporated into program and policy development. Youth participatory action research (YPAR) is an opportunity for adolescents to develop research skills by completing projects relevant to their lives and allows participation and decision-making at systems and organizational levels. Attention to YPAR implementation detail, especially a curricular focus, is lacking in the literature. Specifically absent is an all-encompassing YPAR framework, a gap the current study addresses. The current study includes a review of existing YPAR curricula to develop the Youth Researcher Empowerment Framework, including research components, social emotional competencies, and assumptions necessary for completing a YPAR project that centers youth voice and shared power. The study includes a quantitative assessment of the YPAR curricula and qualitative reviews by adult practitioners. In addition, focus group data from youth and teacher audiences across multiple settings confirmed and clarified terms and concepts related to the framework. The study provides empirical evidence to support a revised framework for YPAR curricular implementation. Implications are discussed in terms of aspects of the research process needed for YPAR projects, attention to specific youth developmental skills as outcomes, and underlying principles needed to create a welcoming, contextual space allowing for empowerment, youth voice, and choice.

Integrating Extended Reality in Architectural Design Studio Teaching and Reviews: Implementing a Participatory Action Research Framework

Integrating Extended Reality in Architectural Design Studio Teaching and Reviews: Implementing a Participatory Action Research Framework

Teaching Moral Values Through Real-life Dilemmas

The purpose of this study is to contribute to contemporary debates about alternative ways of teaching Moral Education (ME) in Malaysia by including the voice of students. ME in the Malaysian setting is both complex and compulsory. The research is founded on a modified version of Vygotsky’s Zone of Proximal Development (ZPD), extended to suit the multicultural, multi-ethnic Malaysian setting, and here called the Zone of Collaborative Development (ZCD). This study uses qualitative research methodology consisting of a modified framework of participatory action research (PAR) as the methodological framework. Data was gathered for textual analysis through a modified form of participant observation, focus group transcripts, interviews, and student journals. Findings show that students were concerned about moral issues and values not covered in the current ME curriculum. The moral dilemmas that they identified were relational and context dependent. Multiple factors contributed to the problems they described.

"If only balls could talk…": barriers and opportunities to participation for students with blindness and visual impairment in specialized PE.

For children with blindness and visual impairment (BVI) of all ages, disability sport and/or regular Physical Activity (PA) are deemed beneficial, promoting physical and mental health as well as increasing wellbeing and life satisfaction. In this regard, Physical Education (PE) serves as a foundation to regular and lifelong participation in PA, mainstream and/or disability sport. Research points towards manifold participation barriers for children with BVI in PE, which so far have mainly been investigated in inclusive settings and from the perspectives of sighted parents, teachers and peers. Consequently, people with BVI frequently consider PE a missed opportunity for lifelong PA. As transitioning from general to special schooling deems the only alternative to continue their education, questions arise in how far and in which ways specialized schools manage to accommodate their needs in PE. To address these gaps in literature, we investigated BVI students' perceived opportunities and barriers to participation in PE within a specialized school setting and their imaginations for possible (digital) improvements and solutions. Within the framework of Inclusive and Youth Participatory Action Research, we adopted the Mosaic Approach to investigate a sample of 19 students aged 14-20 at lower and upper secondary level in a specialized school in Austria. Data material included audio-recordings of interviews, student-guided school tours, photographs of significant places and objects and field protocols. The analysis was conducted with Interpretative Phenomenological Analysis. Through the analysis, we identified three themes. The data material firstly revealed the complex intricacies of how PE teachers can act as facilitators and gatekeepers to autonomous PA. Secondly, material norms function not only as barriers to participation even in a specialized school setting, but also constitute the basis for social hierarchies between students with various degrees of visual impairment. Thirdly, students imagined manifold digital solutions to enhance participation derived from their perceived barriers. The findings contribute to amplifying BVI individuals' voices and provide revealing insights in how participation in PA is enabled and prohibited for students with BVI which can not only help to improve specialized but also inclusive settings.

More than words: Photovoice as an innovative participatory approach to explore perceptions of rare dementia, a pilot study

AbstractBackgroundThere is limited evidence internationally exploring the everyday experiences of people living with rare dementia (PLWRD)– by which we mean atypical, inherited, and young onset forms of dementia– from their own subjective perspectives. Photovoice (Wang and Burris, 1997) is an inclusive, empowering visual research methodology that facilitates collaboration and supports shared understandings. This pilot study presents findings from the first known study where an inclusive research team, including individuals with different rare dementia diagnoses (e.g. Primary Progressive Aphasia, Posterior Cortical Atrophy, Dementia with Lewy bodies) used Photovoice methodology to visually represent experiences and perspectives of living with these conditions.MethodDrawing on Freire’s empowerment pedagogy, the study aims were consistent with global Photovoice aims: enabling people to visually record critical dialogue about their experiences of dementia through photography. We investigated the benefits and challenges of Photovoice methodology with this population and sought to identify perspectives of rare dementia from eight PLWRD. Data analysis utilised an iterative, participatory approach in which researchers and co‐researchers selected, contextualised, and codified the data. Thematic analyses involved both inductive and realist approaches.ResultThis paper discusses some of the practical challenges associated with using this methodology with PLWRD, as well as issues concerning co‐researcher’s perspectives on the acceptability and utility of Photovoice. We examine the benefits and challenges of using Photovoice and discuss lessons learned relating to the co‐production of topics and outputs, including barriers and facilitators to co‐researcher engagement with the study processes (e.g. use of cameras, photo upload).ConclusionThis pilot study will help inform a larger scale project where Photovoice and other creative participatory approaches (e.g. graphic elicitation) will be applied within a participatory action research framework that will promote group and individual reflection on dementia perspectives. In turn we hope this will lead to social action on a local and national level by co‐researchers with rare forms of dementia. This study contributes to the existing, if limited, international literature on creative participatory approaches with PLWRD.

Towards pluriversal views of digital technologies: the experiences of community and indigenous radios in Chiapas, Mexico

ABSTRACT This article aims to present an emerging perspective for analyzing digital technologies, centering around the concepts of pluriversality and communality, and drawing on the experiences of the Network of Communicators Boca de Polen, a civil organization that has been supporting community and indigenous radios in Chiapas, Mexico for over two decades. Using a Participatory Action Research framework, the study delves into the network's experiences and those of the radios it has accompanied, revealing a profound interplay of sociotechnical practices deeply rooted in communal experiences. It sheds light on a particular pathway of technology appropriation and resistance and, by shifting the place of enunciation, explores new dimensions of concerns and possibilities enabled by digital technologies. The experiential knowledge gained from Boca de Polen is presented as a tangible manifestation of a pluriversal vision of technology, vital for fostering inclusive critical reflections on the multifaceted implications of digital technologies.

Clinical utility and validity testing of a co-designed outcome measure for hand burn injuries

IntroductionA new outcome measure for hand burn injuries was co-designed within a Participatory Action Research framework with expert clinicians and individuals with hand burn injuries. The outcome measure reviews activities which are commonly interrupted post hand burn injuries and includes 18 activities. ObjectiveThe aim of this study was to establish the clinical utility, face, and content validity of the newly developed outcome measure. MethodsThree constructs of interest were examined using study specific questionnaires from the perspectives of clinicians and individuals with hand burn injuries. Clinicians working in burns centres around Australia and New Zealand and individuals attending a burn centre within one tertiary hospital trialled the outcome measure. Upon testing the outcome measure each participant completed the questionnaire. ResultsTwenty individuals with hand burn injuries and eight clinicians trialled the outcome measure. There was 85% agreement from individuals and 100% agreement from clinicians for face validity. Content validity was tested across the domains of relevance and clarity. Individuals rated all activities and clinicians rated 16 activities as relevant. Clarity of activities was high for both participant groups (>75% agreement). Clinical utility (measured in the domains of appropriateness, accessibility, practicability, and acceptability) was high, 95% of individuals reported agreement for practicability and 100% agreement for acceptability. Clinicians reported agreement of > 87.5% for appropriateness, accessibility, practicability, and acceptability. ConclusionThe results demonstrated agreement for clinical utility, face, and content validity of the co-design outcome measure for hand burn injuries. Further validity and reliability testing is planned, including Rasch analysis.

The effects of peer inclusion in the design and implementation of university prison programming: A participatory action research, randomized vignette study.

Objective: Including people most impacted by a challenge in designing and implementing solutions to that challenge has reemerged in social science research. In prison settings, academics' outside knowledge of "what works" combined with incarcerated people's inside knowledge of lived experience could lead to more comprehensive rehabilitative programs. This combined approach may make less sense as an intervention in prison, however, due to sensitive and complicated interpersonal dynamics. We determine if incarcerated women perceive prison programs as more efficacious when other incarcerated women are collaboratively involved in the design and implementation of those programs, as compared to other program delivery methods. Methods: We employ a participatory action research framework in administering a randomized vignette to 200 incarcerated women. We randomize who designs and teaches a prison program in a hypothetical scenario, with incarcerated women alongside university researchers the key combined condition of interest. We then ask a series of questions regarding incarcerated women's perception of the program's efficacy. Results: Women who received the combined condition were four times more likely to view the program as legitimate when compared to programs taught by correctional staff. The combined condition was not significantly different on legitimacy when compared to either researchers alone or incarcerated women alone. We did not observe other expected relationships between the combined condition and perceived program efficacy. Conclusions and Implications for Practice: Researcher and incarcerated person-led programming should be implemented carefully in institutional settings to leverage the value of lived experience while avoiding creating further harm for confined people. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Partnering for Change: collaborating to transform occupational therapy services that support inclusive education.

The United Nations champions inclusive education as a moral obligation, requiring equitable learning environments that meet all individuals' diverse learning needs and abilities, including children and youth. Yet the practice of inclusive education is variable and implementation challenges persist. A participatory action research framework was used to develop a solution, Partnering for Change (P4C), which is a tiered service delivery model that bridges health and education by re-envisioning occupational therapy services and transforming the role of the occupational therapist from a service provider for individual children to a collaborative partner supporting the whole school community. This perspective article will describe the P4C model and its evolution, and will outline how it has been implemented in Canadian and international contexts to facilitate children's inclusion and participation in educational settings.

The burden of global outbreaks: Photos of the daily lives of children with congenital Zika syndrome during the COVID-19 pandemic.

In Brazil, more than 3500 children with congenital Zika syndrome (CZS) face difficulties participating in activities of daily living, which may be aggravated by health emergencies, such as the COVID-19 pandemic. Participation could be defined as the individual's involvement in daily life situations, and participation restrictions are problems that may arise in involvement in everyday situations. To explore the daily lives of children with CZS during the COVID-19 pandemic using photographic narratives captured by mothers and discuss possible strategies to improve participation results. In this participatory action research, seven young Brazilian mothers acted as co-researchers using photovoice to describe the experiences of their children with CZS (from 2 to 5 years old). Also, mothers contributed to validate the contents. The research was conducted online and included the following steps: pilot study, recruitment, individualized training, sociodemographic interview, photovoice training, photo taking, focus group for contextualization, data transcription and analysisand validation of analyses by the mothers. Content analysis revealed five categories that influenced the participation of the children: participation preferences, family relationships, access to healthcare, access to educationand social isolation. Regarding participation preferences, mothers reported their children's desire to play with peers and family members and have autonomy. Mothers described the family environment as a happy, peacefuland safe place for the children. Lack of therapy was perceived to negatively impact the health of children; thus, treatments were considered essential for child development. Access to education included accessibility of remote education and a perceived lack of infrastructure and pedagogical preparation. Last, social isolation due to COVID-19 directly affected the daily lives and behaviour of the children, interrupting therapies and medical appointments. The photos and narratives captured several aspects of the daily lives of children with CZS impacted by the COVID-19 pandemic, reinforcing the importance of considering the negative effects of social isolation and offering education and social assistance to promote participation and integral health. Consistent with a participatory action research framework, Mothers acted as co-researchers and participated in all stages of the research, especially in validating the data analysed by the researchers.

Canada's Student Mental Health Network: Protocol for a Comprehensive Program Evaluation.

Prevalence estimates for mental health-related problems, including above-average stress, psychological distress, and symptoms of mental illnesses have increased significantly among Canadian postsecondary students. As demand for downstream mental treatment has surpassed many institutions' abilities to deliver timely care, there is a need for innovative upstream supports that foster mental health promotion and mental illness prevention among this population. Supported by an extensive network of student volunteers, Canada's Student Mental Health Network is a virtual, one-stop shop for centralized mental health education and evidence-based resources tailored to postsecondary students. This article describes a protocol for the comprehensive evaluation of the Network. Development of the Network was developed using a participatory action research framework. Network content is created and curated by students and reviewed by subject matter experts. The proposed program evaluation will include both a formative process evaluation and a summative impact assessment to determine the feasibility, acceptability, and utility of the Network in addition to assessing change in the 3 primary outcomes of interest: mental health literacy, perceived social support, and help-seeking behavior. Participants will be recruited directly from the Network website using a "rolling" recruitment approach to allow for continuous data collection and evaluation. A combination of qualitative (ie, interviews) and quantitative (ie, surveys) methods of data collection will be used. The process of evaluation of the Network will begin in September 2022, collecting data for 1 year. In September 2023, the impact evaluation will begin using the same follow-up schedule. Data collection will then remain ongoing to facilitate the continued evaluation of the Network. Reports detailing evaluation data will be released annually. The Network is a novel and innovative method of delivering universal mental health promotion to Canadian postsecondary students by providing centralized and freely accessible mental health education and resources, created by students and validated by subject matter experts. The continued creation and curation of resources for the Network will be ongoing to meet the evolving needs of the target population. PRR1-10.2196/41521.

Development of Integrated Marketing Communication Model for Health Tourism Entrepreneurs to Accommodate Elderly Tourists in the World Heritage City for Elderly Tourists (Phra Nakhon Si Ayutthaya District)

The goals of this article are to 1) examine the integrated marketing communication situation of health tourism entrepreneurs to accommodate elderly tourists in the World Heritage City for elderly tourists (Phra Nakhon Si Ayutthaya District); 2) examine the integrated marketing communication of medical tourism entrepreneurs to accommodate elderly tourists in the World Heritage City for elderly tourists (Phra Nakhon Si Ayutthaya District); and 3) examine health tourism entrepreneurs to accommodate elder tourists (Phra Nakhon Si Ayutthaya District). The research design is mixed-methods research with participatory action research (PAR). In-depth interviews, focus group discussions, and policy meetings are all used in the qualitative research model, and employ the Snowball Sampling method of random sampling by referring people and experts, analyzing the data using content analysis, and composing a descriptive narrative. 400 senior tourists were sampled using the purposive selection method for the quantitative research method. Then, descriptive statistics and the Structural Equation Model (SEM) were used to analyze the data. The study's findings indicate that the "SILVER D Model," which consists of the seven strategies under the models S-Standard, I-Integrated, L-Lifestyle, V-Value Proposition, E-Entrepreneurial, R-Responsibility, and D-Digital Marketing, is the integrated marketing communication model employed by health tourism entrepreneurs to accommodate elderly tourists in the Phra Nakhon Si Ayutthaya District, a World Heritage Site. 3. The "SILVER D Model," a participatory action research (PAR) framework and strategies falling under the aforementioned 7 strategies The information gained from this study can be used to create an integrated marketing communication strategy for health tourism business owners to assist senior tourists in the Phra Nakhon Si Ayutthaya District, a World Heritage City for elderly tourists, for the benefit of the stakeholders involved in both economics and policy.

Child-led resistance in the streets of the global south: Decolonial perspectives of violence against children outside of family care

BackgroundViolence against children (VAC) remains an urgent global dilemma and researchers and policymakers alike continue to work tirelessly to devise strategies aiming to end VAC. However, the perspectives and expertise of children themselves remain underrepresented in the drafting and implementation of these strategies against VAC. This paper draws attention to the marginalization of children living outside of family care and centers their perspective. ObjectiveThis study aimed to characterize the forms of violence experienced by children living outside the family setting in Uganda, from the perspective of children themselves.The paper seeks to position the voicing of this perspective as a form of resistance against VAC from a decolonial perspective.Participants and Setting: The participatory research process included a total of 94 participants in various urban study sites in Kampala, Uganda. MethodsThe research team completed this qualitative study within a youth-driven participatory action research (YPAR) framework. Data collection techniques included interviews, focus groups, participatory visual methods and social cartography. ResultsChildren living outside of family care experience grave forms of emotional, physical and sexual violence. Child participants present survival strategies that can inform future research and policies on violence prevention practice. ConclusionsThe illustration of explicit violence outlined in this study represents a form of resistance children take against their perpetrators. The participatory youth researcher team urges future research and policy addressing VAC in Uganda to center these perspectives and expertise of children and adolescents in both programmatic and research initiatives aiming to end violence against children.

Who takes part in participation? Challenges to empowering student voice in music teacher education

ABSTRACT In this study, we employ a participatory action research framework to investigate how preservice music teachers can take part in developing their own education. The main focus is on how two music teacher educators at two institutions in Norway work to create a space for student voice and participation. The study’s data are analysed and presented through a combination of self-study methodology and narrative analysis conducted by two of the authors, followed by reflections by the two other authors. In these analytical steps, we identify four teacher roles in the form of metaphors: ‘the impatient manager’, ‘the conflicted gatekeeper’, ‘the balancing artist’ and ‘the reluctant host’. These roles are further discussed in light of theoretical perspectives on student voice and participation. The results reveal challenges in the use of participatory action research and in making changes to music teacher education.

Extending single-session interventions to target parents as agents of change in adolescent eating disorders.

Schleider et al. (2023, International Journal of Eating Disorders, current issue) propose multiple applications of single-session intervention (SSI) models to the eating disorders (EDs) intervention spectrum. In this commentary, we propose extending the potential of SSIs to target parents as agents of change for youth with restrictive EDs, particularly anorexia nervosa (AN). Directing SSIs to parents of children with AN can circumvent psychological barriers to care while capitalizing on the unique level of motivation in a parent to protect a child and advance their capacity to thrive. Key design components of effective SSIs map well onto the core principles of family-based treatment (FBT), which can be distilled to inform the development of SSIs for parents of youth at risk or exhibiting emerging or diagnostic AN. The participatory action research framework highlighted by Schleider et al. (2023) speaks to the importance of developing SSIs using co-design methodologies with parents. Doing so reflects the FBT principle of parent empowerment, acknowledges the research on parental self-efficacy as a mediator of FBT, and recognizes parents as both key stakeholders in the prevention and treatment of child and adolescent EDs, and as the intended recipients of the SSIs created for this population. PUBLIC SIGNIFICANCE: Schleider et al. (2023, International Journal of Eating Disorders, current issue) propose multiple applications of single-session intervention (SSI) models to eating disorders (EDs). In this commentary, we extend the potential of SSIs to target parents as agents of change for youth with restrictive EDs. Parent-focused SSIs can circumvent psychological barriers to care while capitalizing on the unique level of motivation in a parent to advance their child's capacity to thrive.

“One-by-One, TB Took Everything Away From Me”: A Photovoice Exploration of Stigma in Women with Drug-Resistant Tuberculosis in Mumbai

Stigma related to drug-resistant tuberculosis (DR-TB), one of the world's most severe infectious diseases, is a major barrier to TB elimination particularly for women living in settings of gender inequity. Drawing on the participatory action research (PAR) framework of photovoice, we explored lived experiences of DR-TB stigma among nine affected women in Mumbai, India. Consenting women took, shared, and contributed to the critical interpretation of 37 non-identifying images and associated narratives with one another and with PAR researchers. The study surfaced vivid, untold stories of trauma and life-altering encounters with enacted, anticipated, and internal stigma, that were characterized by loss (of self, voice, status, mobility), abuse (mental, social) and deep internal distress (shame, isolation, suffocation, peril). The study also revealed how stigmatized women found means to build resilience and resist the impacts of stigma. We further witnessed the building of their collective resilience through study participation. Photovoice proved to be a uniquely compelling method of data capture and interpretation, with potential to develop meaningful engagement and solidarity among women affected by DR-TB.

Informing the development of the coaching online and community health (COACH) program: a qualitative study of clubhouse members living with serious mental illness.

Health and wellness interventions addressing risk factors for early mortality among individuals with serious mental illness have demonstrated success and can be further augmented with digital technology. These programs may be suitable for delivery in psychosocial rehabilitation clubhouses, especially given many services have transitioned to digital platforms during the pandemic. This qualitative study aimed to: (a) explore clubhouse members' experiences engaging with the virtual clubhouse platform, and their preferences for accessing digital wellness and health promotion content; and, (b) gauge members' interest in an online peer-driven lifestyle intervention and their suggestions for program design. This study was guided by a community-based participatory action research framework. Ten focus groups were conducted with clubhouse members. Focus groups were coded and analyzed thematically by trained clubhouse members and the research team. Thirty-three members participated in the focus groups. Participants expressed the importance of having technical support from staff; that one-on-one support and consistent communication are important to keep them engaged in health and wellness programming; and described mixed views about use of the virtual platform, but generally were open to engaging in lifestyle intervention programming virtually. Participants who joined the clubhouse during the pandemic expressed feeling overwhelmed by in-person gatherings, and were especially interested in opportunities for remote participation. This study can inform health and wellness programming for delivery on the virtual clubhouse platform for members. The taxonomy of codes, created to generate a framework with recommendations, will inform the design of a virtual health and wellness intervention.

Fostering Youth-Enabling Environments: A Participatory Affordance-Capability Framework for the Development and Use of Youth-Engaged Environmental Assessments

This paper proposes a new conceptual approach to the development and utilization of youth-led environmental assessments to inform the planning of youth-enabling environments. Interdisciplinary research has established the influential effects of the physical environment on children and adolescents’ well-being and development, yet there is a gap in our understanding of how to create everyday environments for youth that speak to their needs and interests and provide opportunities for them to flourish. Engaging youth through participatory action research to both develop and conduct environmental assessments can have positive implications for youth empowerment and well-being while also altering research and planning practices to effectively integrate youth voice. The proposed approach integrates elements from affordance theory, the Capability Approach, and positive youth development within a youth participatory action research framework to create a process that encourages capability formation, fosters positive development, and improves our understanding of what constitutes a youth-enabling environment.

Identifying barriers to the educational role of midwives in Cyprus and defining determinants in behaviour terms using the Behaviour Change Wheel: a mixed-method formative study

BackgroundΤhe Baby Buddy Cyprus webapp was co-created with parents and health professionals within a Participatory Action Research framework. While using Baby Buddy in routine consultations can support the educational role of mother–child healthcare providers (HP), antenatal education (AE) may be currently perceived as a formal activity within the physical space of the antenatal class. We aimed to gain an understanding of influences on midwives engaging in an educational role during routine appointments and identify potential interventions using the Behaviour Change Wheel (BCW) framework.MethodsThis is a formative mixed-methods research study, with a convergent parallel design, guided by the COM-B model and related Theoretical Domains Framework (TDF). Complimentary methods were used to collect information from in-training and registered midwives: focus group (N = 11), questionnaire survey (N = 24) and Nominal Group Technique during workshops (N = 40). Deductive content analysis of qualitative data and quantitative survey analysis shaped the behaviour diagnosis along the 6 COM-B and 14 TDF domains, and informed the selection of relevant intervention functions and related Behaviour Change Techniques from the BCW taxonomy.ResultsAE is viewed as a core function of the professional role, yet neither supported nor prioritized by current practices. Problematic areas relate to organizational context, such as weak interprofessional collaboration and lack of policy, protocols and resources. In addition, medicalization of birth and related socio-cultural norms, pertaining to users and providers, are sustaining alienation of the midwife and conditions of power dynamics. AE was perceived as a means to enhance the autonomy of the profession but there might be issues with procedural knowledge and the need for skill development was identified. Several intervention functions were identified as promising, however cognitive re-framing through strategic communication and modelling may also be needed both in terms of providing “credible models” for the role itself as well as re-framing AE through the concept of “making every contact count”.ConclusionsAE is currently perceived to be a ‘bad fit’ with routine practice. The study identified several barriers to the educational role of midwives, influencing Capacity, Opportunity and Motivation. While digital tools, such as Baby Buddy, can facilitate aspects of the process, a much wider behaviour and system change intervention is needed to enhance midwives’ educational role and professional identity. In addition to proposing a theory-driven research-informed intervention, the process functioned as a participatory learning experience through collective reflection.

Engage, understand, listen and act: evaluation of Community Panels to privilege First Nations voices in pandemic planning and response in Australia

IntroductionFirst Nations Peoples of Australia have not been included in the development nor prioritised in pre-2009 pandemic plans despite being a priority population in Australian health policy. Marginalised groups experience...