Participatory Action Research Group Research Articles

110 Answering the Call for Greater LGBTQ+ Research Inclusivity by Co-Developing A Workshop for Researchers

OBJECTIVES/GOALS: The objectives of this workshop were to: (1) provide learners with a space to become aware of and discuss the history of the LGBTQ+ community in medical and public health research; (2) apply frameworks for LGBTQ+ inclusivity in research, inspired by lived experience and multimedia; and (3) assess LGBTQ+ research inclusivity best practices. METHODS/STUDY POPULATION: The CTSC provided the LGBT Community Center of Greater Cleveland (Center) with access to academic resources via an affiliate account and insights on the clinical and translational science research process. Members of the CTSC Research Equity, Accessibility, Diversity, and Inclusion team met regularly with the education and programming team at the Center to review research findings for workshop segments, ideate and provide feedback on activities, and strategize to ensure a psychologically safe virtual environment for learners. Zoom registration was used for workshop registration. An evaluation survey, created by the LGBT Community Center of Greater Cleveland (Center), was deployed by the CTSC to learners after the workshop. Respondents reported that the LGBTQ+ terminology focus was most valuable. RESULTS/ANTICIPATED RESULTS: To maximize investment in and scale theLGBTQ+ Inclusivity For Researchers workshop, the LGBT Community Center of Greater Cleveland offered a shortened version to their Youth Participatory Action Research group and will continue to offer the workshop in their suite of program/educational offerings. The CTSC plans to offer opportunities to co-host the workshop at its hospital system partner institutions, with room to tailor content based on internal LGBT resources (e.g., gender care offered at the institution). We hope to see a remarkable increase in LGBTQ+ identifying researchers, LGBTQ+ participation in research studies and clinical trials, and LGBTQ+ research topics/ideas/questions in response to CTSC pilots, local, national, and global funding opportunities. DISCUSSION/SIGNIFICANCE: LGBTQ+ people are less likely to have a regular health care provider—impeding screening, diagnosis, and treatment. This is reflected in health research where clinical research participation may follow a diagnosis. By providing tools for LGBTQ+ research inclusion, we will catalyze more research with LGBTQ+ people—as researchers and participants.

Exploring the feasibility of using Participatory Action Research (PAR) as a mechanism for school culture change to improve mental health

ABSTRACT Adolescence is a key time to prevent or reduce poor mental health outcomes. Supportive school environments play an important role in this, and the concept of health-promoting schools have been supported globally. Participatory action research (PAR) combines theory, practice, action, and reflection by developing practical solutions to address concerns and issues within communities. Running four PAR groups across three secondary schools, we explored the feasibility of using the approach as a mechanism for bringing about culture change and improving mental health. We undertook interviews and focus groups with students (n = 24), school staff (n = 11), facilitators (n = 3), and parents/carers (n = 2). Findings are organised under five key headings: 1) Establishing PAR groups, and the PAR cycle; 2) PAR group impact; 3) Facilitators of PAR success; 4) Barriers to PAR success; 5) Future recommendations. This study demonstrated the feasibility of PAR as a tool to improve school culture. Students participating in PAR were engaged, passionate, and motivated to influence and transform school culture to improve mental health. Future research should aim to trial the PAR approach on a larger scale, to determine whether the barriers and facilitators of PAR success identified here are relevant and transferable to schools in other contexts, and to measure the impact of such initiatives on mental health outcomes.

Disillusionment and hope with transnational mothers: Avenues of change in education through acompañamiento

AbstractThis critical ethnographic study explores a participatory action research group consisting of Latin American immigrant mothers seeking to involve their community in school decision‐making. Drawing from pedagogies of acompañamiento, I describe how the mothers responded to decision‐making challenges and leveraged reflections on their struggles to co‐create knowledge and belonging. I demonstrate how their collective learning highlights transformation outside of formal policy channels, pushing us to consider alternative ways of making social change.

Participatory action research to co-design a culturally appropriate COVID-19 risk communication and community engagement strategy in rural Pakistan.

Community engagement has shown to be fundamental component of the response to previous disease outbreaks. This study aimed co-design and implement a culturally appropriate COVID-19 risk communication and community engagement strategy with a resource-poor rural community in Northwest Pakistan. Participatory Action Research (PAR) was conducted from January 2021 to March 2022. Five PAR meetings took place with community members (n = 30) to: (1) explore how the COVID-19 pandemic impacted on the community; (2) identify challenges to limit the spread of the virus; (3) identify and implement solutions to these challenges; and (4) highlight the enablers, challenges and knowledge of the cultural context needed to optimize safety during emergencies. Focus group discussions (N = 6) with community members not involved in the PAR meetings (N = 50) and children of the community (N = 26) were conducted following the PAR meetings. Thematic analysis of the PAR and focus group data was conducted. Delivery of messages on how to keep families safe, provision of personal protective equipment and improved water systems were part of the strategies taken by the community to create awareness and reduce the spread of COVID-19. Nine themes were identified: Attitudes to the pandemic: From skepticism to acceptance, Changing attitudes about vaccination: rumors and trust, COVID-19 and Faith, Social impact of the pandemic, Access to water, Resource mobilization: personal protective equipment, Spaces where collaborative effort can bring to solutions, Agents of change, and Empowerment of women. The participatory approach of this research allowed understanding of the challenges faced by the community to engage in behavior change strategies to reduce the spread of COVID-19 and enabled the community to find sustainable solutions. Engagement with the community empowered men and women to be agents of change and promoted necessary precautionary actions to reduce the risk of infection within their community. Participatory approach highlighted the importance of engaging with and integrating to local culture and values to overcome challenges such as gender imbalance and distrust. Findings of this study are relevant to others working in diverse cultural settings in similar crises events regardless of particular cultural variations.

Questioning Neoliberal Rhetorics of Wellness: Designing Programmatic Interventions to Better Support Graduate Instructor Wellbeing

Previous research has recognized the neoliberal trends that permeate the rhetorics of academic wellness, placing the responsibility for wellbeing on individuals rather than institutions and systems. In this study, the authors implemented a participatory action research (PAR) project to collaborate with different stakeholders in one university writing program and develop programmatic approaches to support the wellbeing one subset of academic faculty: graduate student instructors. Along with an account of how we adapted our PAR methodology to align with the wellness needs of our participants, we also provide a description and analysis of the intervention developed collaboratively in the PAR group. We end with five takeaways that researchers and stakeholders in graduate student education can apply to developing programmatic interventions that better support graduate instructor wellbeing: 1) research methodologies should adapt to foreground wellbeing; 2) productive conversations about wellbeing should start by acknowledging and validating the lived experience of graduate instructors; 3) students want to be involved in programmatic processes and procedures that support their wellbeing; 4) facilitating (but not requiring) non-productive social interaction among grad students can support GI wellbeing; 5) the work of supporting wellbeing is never fully done---we call on administrators, faculty members, and students to continue this work.

A participatory action research study to inform combined type 2 diabetes and chronic kidney disease care provided in the context of advanced practice nursing.

To outline the development, implementation and evaluation of an alternative combined type 2 diabetes and chronic kidney disease (CKD) care delivery strategy provided in the context of advanced practice nursing informed by co-created knowledge, between patients and healthcare teams to address identified gaps in care provision. This study was informed by the theoretical underpinnings of critical theory and operationalized using a participatory action research (PAR) design. This approach enabled alignment between the theoretical underpinnings and research methodology to respond to practice-level problems and address issues related to healthcare delivery. The study was undertaken in a series of three cycles of enquiry over a 20month period (July 2018-February 2020) in five geographically diverse specialist diabetes and nephrology centres. Data collection methods included PAR group minute consensus, retrospective chart review, discovery and focus group interviews. Thematic analysis and descriptive statistics were used to analyse the data. Compared with international standard care outcomes, a higher proportion of patients attending combined care achieved best practice recommendations for blood pressure, Hba1c and lipid management (64.3% vs. <40%). Patients attending combined care experienced improved detection and management of CKD-related anaemia. Additionally, the combined care service experienced significantly lower levels of patient's failure to attend scheduled reviews compared with participating standard care services (0% vs. 7%-23.3%). Best practice clinical care outcomes and patient attendance improved when a combined type 2 diabetes and CKD care delivery strategy provided in the context of advanced practice nursing was adopted. This alternative care strategy represented a departure from standard care delivery approaches, in which care for type 2 diabetes and CKD is provided separately and led by physicians. Outcomes demonstrate improved clinical and attendance outcomes which may inform the development of future services led by advanced nurse practitioners.

ISelf-Help: a co-designed, culturally appropriate, online pain management programme in Aotearoa

IntroductionCurrent best practice recommends group-based pain management programmes for long-term improvements in persistent pain-related disability. However, there are barriers for people to access in-person delivered pain management programmes in Aotearoa.AimsTo develop a co-designed, culturally responsive, online group-based pain management programme (iSelf-help) for people with persistent pain.MethodsA modified participatory action research (PAR) framework was used to co-design contents and cultural-appropriateness of iSelf-help. The PAR team included: (1) seven end-users living with persistent pain, who had previously attended an in-person delivered group pain management programme, (2) two pain management clinicians, (3) two health researchers, (4) two digital health experts, and (5) a health literacy expert. Five meetings were held with the PAR group and a Nominal Group Technique was used to rank order the preferred features of content delivery. In parallel, to ensure cultural appropriateness of iSelf-help, three focus groups (n = 15) were held with Māori (the Indigenous population of Aotearoa) living with persistent pain in collaboration with a Māori community health trust. All contents were reviewed by a Māori Health literacy expert and core contents were translated into Te Reo (Māori language). All contents were finalised by iterative discussion among the PAR team and consultation with Māori stakeholders. The preliminary version of iSelf-help was pilot tested with the PAR group participants and Māori community members living with persistent pain and their feedback was included. The iterative co-design process occurred over a period of nine months.ResultsThe finalised version of iSelf-help included a total of 130 resources organised in to 12 content relevant online modules plus a dedicated welcoming page and an online community forum. Each module included: short videos, animations explaining main concepts, patient stories, written content to accompany visual content, podcasts of relaxation techniques, illustrated texts, and evidence-summaries. A dedicated module of videos demonstrating cardiovascular and strengthening exercises of varying intensity was also included.ConclusionsThis is the first co-created, culturally appropriate, on-line group pain management programme for people with persistent pain, developed in Aotearoa. The next step is to evaluate the clinical and cost-effectiveness of iSelf-help compared to in-person delivered pain management programme.

Strong Carers, Strong Communities: a cluster randomised controlled trial to improve wellbeing of family carers of older people in remote Aboriginal communities.

Unpaid carers have a crucial role in supporting older people with cognitive impairment and disability, but their own health and wellbeing are often impacted. There are limited data on how carer strain, depression and empowerment may be improved for carers. This was a cluster randomised controlled trial to compare the effect of a carer support program developed with a community-based participatory action research (PAR) approach to the delivery of information sessions to 100 carers of people aged 45 years or more living in four remote Aboriginal communities in Western Australia. The mean age of carers was 38.3&plusmn;14.9 years, 76% were female and 77% were children or grandchildren of the care recipient. Carer strain and empowerment measures did not change significantly between baseline and follow-up. A statistically significant decrease in depression scores was observed in the PAR group. However, decreases were observed in both the PAR and control groups, and the change in scores did not differ significantly between groups. Depression scores decreased most in those who had not attended high school. Overall, the proportion of participants meeting criteria for depression decreased from 18.8% at baseline to 8.3% at follow-up. A carer support program was of equivocal benefit, although this research demonstrates that the wellbeing of carers in remote Aboriginal communities can potentially be markedly improved by outreach strategies.

Balancing hope and disappointment: representation, social wellbeing, and the future of small-scale fisheries in Uruguay

ABSTRACT Fishers need to feel they are valued partners in fisheries and coastal management. In 2012, the multi-stakeholder participatory action research Group POPA (For Small-Scale Fisheries in Piriápolis) held the First Small-Scale Fisheries Festival in Piriápolis, Uruguay. We investigated the change the Festival produced in the social representation of local fishers and how it relates to fishers’ wellbeing aspirations. Negative values in fishers’ self-perceptions were found. The positive social change triggered by the Festival tackled mainly fishers’ material wellbeing aspirations (boats, fishing gear for better catch and better income). We also discuss how the change proved relevant at different transformative scales.

Participatory Action Research on School Culture and Student Mental Health: A Study Protocol

Background: Young people spend a large proportion of their time in school, which presents both risk and protective factors for their mental health. A supportive school culture can promote and protect good mental health by creating experiences of safety and belonging amongst staff and students. In this qualitative study, we seek to explore whether a participatory action research (PAR) approach is an effective way to promote and improve student mental health. Methods: Participatory action research is an approach in which people collaboratively research their own experience: the researched communities become co-researchers of their own experiences in a specific context. We will work with four secondary schools in the UK to develop PAR projects. In each school, a group of 2–4 staff and 6–8 students will work together to develop a shared understanding of their school culture and to introduce activities or changes to make the culture more supportive of student mental health. We will evaluate the effectiveness of the PAR approach through i) a review of school documents pertaining to mental health (e.g., policies and Ofsted reports), ii) interviews with staff members ( n = 40), parents ( n = 8) and students ( n = 24–40) before and after the PAR intervention, iii) observations and reports of the PAR group meetings and iv) interviews with members of the PAR groups after the PAR intervention. Discussion: We anticipate that our research findings will advance knowledge on effective methods to develop a positive school culture that will contribute to the improvement of young people’s mental health and well-being. We will seek to identify the mechanisms through which school culture can have a positive impact on mental health and develop a logic model and a school culture toolkit that can be utilised as a resource to inform public health interventions to promote mental health in a range of educational settings.

Action Research at the Intersection of Structural and Family Violence in an Immigrant Latino Community: a Youth-Led Study

The current study addresses the lack of research exploring the social and emotional impact of anti-immigrant policy on Latino communities, and the intersection of anti-immigrant climates with other family stressors, like domestic violence (DV). In this paper we describe a qualitative study led by the participatory action research group La Voz Juvenile de Caminar Latino. Youth researchers conducted semi-structured interviews with Latino men, women, and youth participating in a domestic violence program. Using an inductive approach to thematic analysis, researchers identified themes that reflect how Latino families with histories of DV experience an increasingly anti-immigrant climate. All participants in this study described emotional stress, fear, and restrictions in their day-to-day life attributed to the anti-immigrant sociopolitical climate, and adults also spoke to work-related stress and economic insecurity. Both adults and children described harassment by strangers, coworkers, and/or peers. With regard to DV, women tended to describe immigration stress as exasperating family conflict, while men viewed these external stressors as discouraging DV. Distrust of police and other formal supports was a key theme underlying adult and youth perceptions of help-seeking for DV. The findings of this study suggest that anti-immigrant sentiment and policy creates undue stress for Latino families and barriers to formal help-seeking for DV. The participatory research process provided a corrective experience for youth witnesses of DV and prioritizes the voices of those most affected by immigration policies and violence.

This is our home: Initiating participatory action housing research with refugee and immigrant communities in a time of unwelcome

Community Voices for Housing Equality is a participatory action research group made up of community leaders and social workers whose aim is to address inequality and unfairness in housing by centering the voices of tenants. In this article, the core Community Voices for Housing Equality research team narrates and presents findings from phase one of the project, focused on the experiences of tenants with refugee and immigrant background in Salt Lake County, UT. The authors explain how the project emerged and why, describe the process of facilitating critical community dialogues with tenants, share findings from the dialogues, and describe initial actions taken.

The Parents' Self-Stigma Scale: Development, Factor Analysis, Reliability, and Validity.

For parents of children with a mental health disorder, self-stigma can negatively impact their self-esteem and empowerment. Although measures of self-stigma exist, these have not been created in consultation with parents of children with a mental health disorder. Thus, the aim of this study was to construct a new scale based on parents' experiences and developed in partnership with parents through participatory action research (PAR). Draft items that reflect parents' self-stigmas were drawn from qualitative research. A PAR group further developed these items for conceptual and experiential representativeness, and wording suitability and interpretability. With data from 424 parents of children with a mental health disorder, factor analyses indicated three factors: self-blame, self-shame, and bad-parent self-beliefs. These factors were negatively correlated with self-esteem and empowerment. Internal consistencies were acceptable. In sum, parent self-stigma is best operationalised as including self-blame, self-shame, and bad-parent self-beliefs. A valid, PAR-informed measure is provided to promote consistent, authentic, and sensitive measurement of these components.

Youth Participatory Action Research Findings as Mirror Material: Implications for Advancing Educational Equity Through Formative Interventions

ABSTRACTFormative intervention research holds potential as a tool to disrupt systemic racism and advance equity in education. However, one aspect of formative interventions could be an impediment to realizing this potential, specifically the “mirror material”: data collected by outside researchers meant to provide participants a starting point to co-construct an understanding of a problem. Focusing on mirror material, this article draws insights from a youth participatory action research group to question whose knowledge should provide the grounding for formative interventions. Ultimately, we contend that youth of color should be involved in generating mirror material in equity-oriented formative interventions in education.

The student voice in well-being: a case study of participatory action research in positive education

Positive education blends academic learning and student well-being. Although research and application in positive education is growing, most has involved psychologists and educators applying strategies in schools, with little research that involves student voices in the development and implementation of a school’s positive education strategy. Assumptions are frequently made about what is best for student well-being, with little input from the students themselves. This paper describes a case study of participatory action research (PAR) carried out by students (N = 10) at a publically funded Australian school aiming to implement positive education. PAR is a form of collective inquiry undertaken by the people that the issue directly affects. The PAR group researched the school community regarding well-being during the school year. Mixed methods examined PAR student’s well-being, self-efficacy, autonomy, social and emotional assets, and other competencies before and after the process. Student involvement allowed the school to better understand their students’ well-being, and student-led communication about positive education laid the groundwork for its implementation. Results suggested benefits for the PAR students, particularly in engagement and self-efficacy. This realistically scaled study suggests that involving students using a framework of PAR is a promising, accessible, evidence-based, and developmentally beneficial approach to the implementation of positive education.

Mothers’ Decisions to Disclose or Conceal Their Child’s Mental Health Disorder

Parents of children with mental health disorders are often faced with the dilemma of disclosing or concealing their child's disorder. These decisions have important implications for both child and parent. Our aim is to describe mothers' experiences with the disclosure dilemma; specifically, we describe what is disclosed (or concealed), how, and why, as well as the consequences of these decisions. Data from interviews with 11 mothers of children (aged 5-13 years) with mental health disorders, and a participatory action research group (four mothers) were thematically analyzed. Mothers selectively disclosed (and concealed) to protect and advocate for their child. Their decisions were often influenced by, or were a reactance to, others' opinions, with mothers not only avoiding, but also defending against stigma, and exercising their right to privacy. Despite anticipating negative feedback, mothers more often experienced empathy and support following disclosure. Recommendations are made for developing mothers' confidence in disclosing.

Experiences and Effects of Structurally Involving Residents in the Nursing Home by Means of Participatory Action Research: A Mixed Method Study

ObjectivesThis study aimed to examine the effects of introducing participatory action research (PAR) within the nursing home (NH) on residents’ quality of life (QoL) and NH experience and participation, and to explore their experiences with PAR. DesignA mixed methods design was chosen, including a clustered randomized controlled trial (RCT) and qualitative interviews. SettingFor the RCT, 3 NHs were randomly allocated to 3 conditions: an intervention (weekly PAR activity), an active control (weekly reminiscence-activity), or passive control (care as usual). The qualitative study took place in the intervention NH. ParticipantsWithin the RCT, about 30 residents were recruited for assessments per NH, including 9 PAR participants and 10 reminiscence participants. Qualitative interviews were held with all PAR participants (residents and internal moderator). InterventionPAR is a method to structurally involve residents in the NH operation. Weekly PAR sessions were held with 9 residents and 2 moderators. Here, residents critically analyzed and discussed the NH operation, identified possible problems, suggested improvements, which were further implemented by the NH and monitored by the PAR group. MeasurementsResidents’ NH experience (NH Active Aging Survey), QoL (Anamnestic Comparison Self-Assessment), and experienced participation (Impact on Participation and Autonomy) were measured in the RCT at pre-test, post-test (6 months), and follow-up (12 months). The qualitative study took into account interviews with the PAR stakeholders after 6 months. ResultsThe RCT showed residents’ QoL improving more between pre-test and follow-up in the intervention and active control NH compared with the passive control NH. No other effects were observed. The qualitative data revealed a positive PAR experience. Participants enjoyed the activity and indicated various positive influences. Still, there was room for improvement, including communication toward other residents and between staff. ConclusionsNotwithstanding the modest quantitative effects, PAR led to positive experiences and can have a future in the NH when solving some limitations.

I am from a fantasy, where Freire quotes become reality

Purpose The purpose of this paper is to show the viewpoint of two youth artists, researchers and activists who use spoken word and graphic arts to represent their research. Design/methodology/approach As a bilingual Spanish-speaking Latina and a young Black woman, the authors use artistic expression as a way to voice themselves and to give voice to the work they do as members of two youth research collectives. As individuals, they are members of two different youth participatory action research groups with different goals and ways of making sense of the world. But these groups have also come together to collaborate on issues of shared importance. Findings As youth artist-activists, the authors’ work could stand on its own, but they believe that they are stronger together. They have created a conversation of images and voices that represent the strength they have when they can be themselves. They work together to make a world one deserves to live in. Originality/value The authors’ work originates from within and is influenced by their experiences in the world, by the communities surrounding them, by those who love them, by those who have come before them and by the challenges that are thrown at them. They believe that their words and images have value because they do.

Failing to Meet the Good Parent Ideal: Self-Stigma in Parents of Children with Mental Health Disorders

Self-stigma detracts from the wellbeing, self-esteem, and social connectedness of adults with mental health disorders. Although emerging research has indicated that self-stigma may have similar consequences for parents of children with mental health disorders, currently we lack a comprehensive description of how parents experience self-stigma. To address this, we investigated parents’ lived experiences of self-stigma using a descriptive qualitative approach. Directed by interview questions informed by a parent-based participatory action research group (n = 4), we conducted individual semi-structured interviews with 12 parents of children (aged 5–13) diagnosed with emotional and/or behavioural disorders. Data obtained from interviews with 11 mothers was coded and thematically analysed. Five themes were found: (1) the ‘good parent’ ideal, (2) awareness of external stigma, (3) outcomes of external stigma (social avoidance and self-doubt), (4) self-stigma (believing self-doubt and external stigma), and (5) refuting self-stigma. Our findings show that parents of children with mental health disorders experience self-stigma. However, because it leads to a diminished sense of being a good parent, the self-stigma is of a different type to that which has been described for adults with mental illness. This has important implications for the conceptualisation and assessment of parent self-stigma as research in this area moves forward.

Building the Research Capacity of Clinical Physical Therapists Using a Participatory Action Research Approach

This 2-year study explored the experiences of clinical physical therapists who used a participatory action research (PAR) approach to learn about the practice of clinical research. The aim of this study was to explore the experiences of physical therapists who were conducting clinical research, facilitated by a PAR approach. A mixed-methods research design was used. Physical therapists completed questionnaires, were interviewed, and participated in focus groups prior to and after the 1-year intervention and 1 year later. The research facilitator took field notes. Questionnaire data were analyzed descriptively, and themes were developed from the qualitative data. Twenty-five therapists took part in 4 self-selected groups. Three groups actively participated in the PAR research projects (n=14). The remaining 11 therapists decided not to be involved in clinical research projects but took part in the study as participants. After 1 year, one group completed the data collection phase of their research project, and a second group completed their ethics application. The third group ceased their research project but hosted a journal club session. At completion of the study, the experiences of the physical therapists were positive, and their confidence in conducting research and orientation toward research had increased. The perceptions of physical therapists toward research, relationships among individuals, and how the clinical projects were structured influenced the success of the projects. Only physical therapists of one hospital and no other health care practitioners were included in this study. Fourteen physical therapists divided among 3 PAR groups were overall positive about their experiences when they conducted a research project together. This finding shows that a PAR approach can be used as a novel tool to stimulate research participation in clinics.