Community-based Participatory Research Design Research Articles

Community-led water governance: Meanings of drinking water governance within remote First Nations and Métis communities in Saskatchewan

Access to safe drinking water remains a significant challenge for many Indigenous communities in Canada, particularly for remote communities. This stems from historic colonial practices of water governance that have relied on Western worldviews and excluded Indigenous Peoples. Using an Indigenist research framework and a Community-Based Participatory Research design, we, as Indigenous and non-Indigenous collaborative research team wanted to learn from remote Indigenous communities, including Star Blanket Cree First Nation and the Cumberland House Village at the Treaty 4 and 5 territories (known as Saskatchewan) that have not been adequately represented in water governance. Following this, we used storytelling and deep listening to engage seven Elders and knowledge-keepers from the two communities. The findings show Indigenous People have spiritual and historical worldviews and practices surrounding water and its governance. Promoting Indigenous worldviews in water governance is critical to enhancing access to safe drinking water within the two communities. Therefore, reviving and reconnecting Indigenous drinking water governance promotes community healing and water protection. Insights from this paper propose a meaningful bridge between Western and Indigenous perspectives and the capacity to govern water through deep and complex practices and meanings of water governance.

Participation in Critical Dialogues With Illustrative Images Increases Knowledge About COVID-19 Prevention: A Mixed Methods Longitudinal Approach

This intervention study uses community-based participatory research (CBPR) and longitudinal design to examine changes in COVID-19 prevention knowledge over time (3 time points) among racially minoritized participants ( n = 38). The intervention comprised critical dialogues alongside an illustration used to engage participants in conversations about socioeconomic conditions affecting acquisition of COVID-19 knowledge. Quantitative data showed that COVID-19 prevention knowledge was higher for participants who completed the intervention. Qualitative data were used to illustrate the context under which participants experienced COVID-19 pandemic, how they received COVID-19 prevention information, and how they engaged in decision-making around COVID-19 protective behaviors. Contributions to mixed method research: The combination of CBPR, repeated measures, and critical dialogues (with and art form) in intervention research.

#TEBWorks: Engaging Youth in a Community-Based Participatory Research and User-Centered Design Approach to Intervention Adaptation

#TEBWorks: Engaging Youth in a Community-Based Participatory Research and User-Centered Design Approach to Intervention Adaptation

Exploring community behaviours and stakeholder challenges in engaging communities with dengue prevention behaviour in Malaysia: implementation research for a qualitative study with a community-based participatory research design

ObjectivesTo use a community-based participatory research (CBPR) design to explore local community behaviours and stakeholders’ challenges in engaging communities in dengue prevention behaviours in Hulu Langat, Selangor, Malaysia.DesignThis CBPR design...

User-Centered Design and Usability of a Culturally Adapted Virtual Survivorship Care App for Chinese Canadian Prostate Cancer Survivors: Qualitative Descriptive Study.

Cultural adaptations of digital health innovations are a growing field. However, digital health innovations can increase health inequities. While completing exploratory work for the cultural adaptation of the Ned Clinic virtual survivorship app, we identified structural considerations that provided a space to design digitally connected and collective care. This study used a community-based participatory research and user-centered design process to develop a cultural adaptation of the Ned Clinic app while designing to intervene in structural inequities. The design process included primary data collection and qualitative analysis to explore and distill design principles, an iterative design phase with a multidisciplinary team, and a final evaluation phase with participants throughout the design process as a form of member checking and validation. Participants indicated that they found the final adapted prototype to be acceptable, appropriate, and feasible for their use. The changes made to adapt the prototype were not specifically culturally Chinese. Instead, we identified ways to strengthen connections between the survivor and their providers; improve accessibility to resources; and honor participants' desires for relationality, accountability, and care. We grounded the use of user-centered design to develop a prototype design that supports the acts of caring through digital technology by identifying and designing to resist structures that create health inequities in the lives of this community of survivors. By designing for collective justice, we can provide accessible, feasible, and relational care with digital health through the application of Indigenous and Black feminist ways of being and knowing.

Applying community-based participatory research and user-centered design to optimize a novel lewy body dementia caregiver intervention (PERSEVERE)

Applying community-based participatory research and user-centered design to optimize a novel lewy body dementia caregiver intervention (PERSEVERE)

Meningkatkan Kompetensi Guru sebagai Peneliti Pendidikan melalui Pelatihan Penelitian Tindakan Kelas

Quality teachers are those who at least fulfil the academic qualifications of having a Bachelor degree in the field of Education and the required competencies. But in fact, the continuous professional development for school improvement through the practice of systematic reflection of teaching improvement in the form of conducting classroom action research is still dissatisfactory. Seeing this fact, such activity as workshops to improve classroom action research skills through community service are needed. The design of this activity follows the Community-Based Participatory Research Design (CBPR). This design consists of five steps Formulation of Research Problems, Collecting Data through Interviews, Compiling Interview Results, Regrouping, Clustered Discussion, Modification of Research Problems. In this community service, the target participants were 25 teachers of SMPN Pulo Gadung District. The training activities have many benefits for both parties, the research team and the teacher team. These benefits are the establishment of coordination, communication and cooperation in order to improve the quality of education, especially in improving teacher competence in conducting PTK.

Community-Academic Partnership: Intervention to Prepare Community Members for the End-of-Life Journey.

Despite research findings that rural Appalachians prefer to die at home, few people access palliative and hospice care services, and many report limited knowledge about palliative/end-of-life care resources. A community-academic partnership was formed to address this need. Train-the-trainer workshop and materials were co-developed. This study tested the feasibility and cultural acceptability of the training intervention to increase community members' knowledge about palliative/end-of-life care resources for East Tennessee Appalachian people. Community-based participatory research design and culture care theory guided the project, intervention, and research. After engaging in end-of-life training, participants completed a retrospective pretest-posttest survey. Paired samples t tests were used to compare knowledge before and after training. Means and standard deviations were used to report training material usefulness and cultural acceptability. Short-answer qualitative data were analyzed using content analysis. Sixty-six adults completed the survey. Ratings for training materials and cultural/theological acceptability were high. Participant knowledge rankings showed significant improvement after training at the P <.001 level. Qualitative feedback was positive. The training intervention was feasible, culturally acceptable, and effective for increasing East Tennessee Appalachian persons' palliative/end-of-life care knowledge. Community member expertise/collaboration integrated into every stage of the project is the bedrock of cultural acceptability and feasibility.

Developing a Depression Care Model for the Hill Tribes: A Family- and Community-Based Participatory Research.

A high prevalence of depression has been detected among individuals from the hill tribes in Thailand. However, there are no proper interventions to address this problem. Using a community-based participatory research (CBPR) design, the study team developed a model of depression care for this population. The study involved 45 people in the model development and 65 people in the model testing, who were patients, family members, village health volunteers (VHVs), community and religious leaders, healthcare personnel, NGOs, and local administrative staff. The model development was divided into three phases: understanding the current situation of depression and care, model development, and evaluation of its effectiveness using psychological and relevant outcomes. Questionnaires, observations, focus groups, and in-depth interviews were used for data collection, and content analysis was employed for qualitative data. The Wilcoxon signed-rank test was used to analyze changes in VHVs' knowledge and skills before and after training. The resulting model, "SMILE," consists of stakeholders' readiness (S), external and internal motivations (M), interpersonal relationship (I), life and community assets (L), and empowerment (E). VHVs underwent training on the model, and after training, their knowledge increased significantly from 3.50 ± 1.14 to 8.28 ± 0.81 (p < 0.001). Moreover, their basic counselling and depression screening skills showed improvement from 3.39 ± 1.23 to 7.64 ± 3.76 (p < 0.001). The developed model can be applied to other hill tribe communities in Northern Thailand to improve depression care.

"People Have Died To Get Us To Where We Are"

We live in an aging society, but lesbian, gay, bisexual, and transgender plus (LGBT+) people often lack equitable access to aging-related information and services. Systematic barriers to information, or information marginalization, has been described as affecting various populations including LGBT+ people; organizations perpetuate it, but research often ignores their role in addressing it. The purpose of this study is to combat aging services information marginalization in partnership with LGBT+ older adults and community-based organizations. Utilizing concepts from Information Marginalization Theory and a community-based participatory research design, this study asks LGBT+ older adults what they see as their aging-related needs, what barriers they see to getting those needs met, and what practices they would like to see providers use to help remove those barriers. Thematic analysis of interviews with 25 LGBT+ older adults 50 years and older in East Tennessee produced 5 need, 7 marginalization, and 4 practice themes which served as the basis for a strategic plan to improve aging services to this population. Nineteen of those 25 interviewees discussed and finalized the strategic plan across 5 focus groups. A constructivist grounded theory analysis of all of the interviews, focus groups, and the author’s participant researcher data resulted in an 8 point model for combating information marginalization that may be implemented with marginalized people in various contexts. This study contributes to a social justice understanding of action and design theory, expands action research methodology, and brings attention to a fast growing population that is understudied in library and information science.&#x0D;

Big advocacy, little recognition: the hidden work of Black patients in precision medicine

As cost-effective next-generation genome sequencing rapidly develops, calls for greater inclusion of Black people in genomic research, policy, and practice are necessary for effective translation of genomic science into precision population health and medicine. Employing a community-based participatory mixed methods research design, we developed a semi-structured survey that was disseminated to three cancer advocacy organizations. Of the 81 survey respondents 49 (60%) self-identified as Black, and 26 (32%) indicated a prior breast cancer diagnosis. Black participants’ expressed concerns about genetic testing were evenly distributed between concerns that could be addressed through genetic counseling (24%) and concerns about subsequent use of their genetic data (27%). Patient advocates contributed to contextualization of respondent concerns in terms of community experiences. Although genetic counseling services and policies governing genomic data use are not always accessible to many Black communities, advocates on our research team provided a bridge to discussion of the intersection between respondent concerns and the roles advocates play in filling gaps in access to genetic counseling and data governance. Concerns expressed by Black patients underscore a shared need among all patients for access to education, inclusion in research, and assurances regarding the use and handling of genetic data. Black cancer patients have joined in patient-led efforts to overcome systemic inequities in cancer care to improve their health outcomes through representation. Often their efforts are overshadowed by a relentless burden of continued health disparities. Future research should support their hidden work as a means to reduce barriers and improve representation in genomic databases.

Participatory action research

1. Introducing Participatory Action Research 2. Child Welfare Participatory Action Research Design Teams for Workforce Reconfiguration, Organizational Innovation, and Policy Change . 3. Participatory Action Research with Youth 4. A Complex, Community-Based Participatory Action Research Design to Address Obesity in Young Children and Their Families 5. The Critical-Emancipatory Tradition of Participatory Action Research in Postdisaster Recovery Settings in the Global South 6. Summary Reflections and Lessons Learning KEY WEBSITES FOR PARTIPATORY ACTION RESEARCH REFERENCES INDEX

Great Plains American Indians' Perspectives on Patient and Family Needs Throughout the Cancer Journey.

To explore the perspectives on patient and family needs during cancer treatment and survivorship of American Indian (AI) cancer survivors, caregivers, Tribal leaders, and healers. 36 AI cancer survivors from three reservations in the Great Plains region. A community-based participatory research design was employed. Postcolonial Indigenous research techniques of talking circles and semistructured interviews were used to gather qualitative data. Data were analyzed using content analysis to identify themes. The overarching theme of accompaniment was identified. The following themes were intertwined with this theme: (a) the need for home health care, with the subthemes of family support and symptom management; and (b) patient and family education. To provide high-quality cancer care to AI patients in their home communities, oncology clinicians should collaborate with local care providers, relevant organizations, and the Indian Health Service to identify and develop essential services. Future efforts must emphasize culturally responsive interventions in which Tribal community health workers serve as navigators to accompany patients and families during treatment and in survivorship.

COMMUNICATING ELSI ISSUES IN NEUROBIOBANKING AND STROKE GENOMIC RESEARCH IN AFRICA: PROJECT INTERVENTION TOOLS DEVELOPMENT AND EVALUATION PROCEDURES

Background and aimsActivities about appropriate community engagement and communication of research outcomes with stakeholders have received the attention of scholars in different sub-fields of clinical research. However, given its novel nature, especially in Sub-Saharan Africa, community engagement addressing the ethical, legal, and social implications (ELSI) of neurobiobanking and stroke genomic research has not received much scholarly attention. Therefore, this study was designed to report the procedures for developing and evaluating intervention tools for the community engagement component of the African Neurobiobank for Precision Stroke Medicine ELSI Project. MethodsA community-based participatory research design was adopted to develop three intervention tools. An adapted Doak and Doak's Suitability Assessment Measure (SAM), the Agency for Healthcare Research and Quality (AHRQ) Patient Education Materials Assessment Tool (PEMAT), and semi-structured interview questions based on Willis’ Cognitive Interviewing Techniques were used to evaluate the suitability, actionability, understandability and cultural appropriateness of the tools. ResultsPEMAT mean percentage scores of 71.4% for actionability and 82.4% for understandability, and a SAM suitability score of 67.9% were reported for the videos. Identified weaknesses captured in seven thematic areas after analysis of assessment by experts and community members guided the final refinement of the tools. ConclusionThe overall reviewers’ reports and evaluation scores indicate that, generally, the intervention tools are suitable for community deployment in the sub-Saharan African setting. Clinical researchers must clearly define their policy objectives, partner with key stakeholders, define desired behaviour change, and develop appropriate strategies, tools of engagement and communication channels.

A holistic approach to well-being and neglected tropical diseases: evaluating the impact of community-led support groups in Nigeria using community-based participatory research.

Neglected tropical diseases (NTDs) affect around 1 billion people, many living in the poorest parts of the world. NTDs often lead to serious long-term physical impairments. Stigma, disability, poverty and social isolation interact, resulting in poor quality of life and significant psychosocial impacts. The holistic health and psychosocial needs of persons affected by NTDs are often overlooked in integrated NTD programme design and research. Furthermore, the viewpoints of persons affected are often absent and spaces for empowerment and advocacy are limited. Using a community-based participatory research design, our study partnered with persons affected and caregivers as co-researchers to address this gap. Through the process, we co-designed and implemented community-based support groups in Kaduna and Kwara, Nigeria, where NTDs are endemic. This paper utilises photovoice with support group facilitators (persons affected); participant observation of group meetings; rapid micronarratives with support group members; and key informant interviews with programme implementers at the state and local government area levels to explore the impact of the support groups from the perspective of people affected by NTDs and other health system actors. Perceived impacts of the support groups included a sense of ownership and empowerment, stigma reduction, improved self-esteem, improved health knowledge and health outcomes and capacity strengthening through vocational training. Support groups, as community spaces of healing, offer a low-cost holistic intervention for chronic disease and disability.

Where past meets present: Indigenous vaccine hesitancy in Saskatchewan

In Canada, colonisation, both historic and ongoing, increases Indigenous vaccine hesitancy and the threat posed by infectious diseases. This research investigated Indigenous vaccine hesitancy in a First Nation community in...

Utilizing Mixed Methods Community-Based Participatory Research to Improve Environmental Health and Quality of Life Outcomes in Rural Rwanda

Background: Health risks associated with burning biomass and stress on forests caused by firewood demand have necessitated improved cookstove programs. This study aimed to introduce and assess the functionality and impact of an intervention rocket cookstove in a rural Rwandan village.&#x0D; Method: This study used a mixed-method community-based participatory research (MMCBPR) design to introduce and test an intervention rocket cookstove. Interviews and focus groups were conducted to gather participants’ perspectives on using stoves and their perceived impact on quality of life. This study occurred over five years and culminated in three distinct phases.&#x0D; Results: Quantitative data showed that rocket stoves reduced firewood consumption by 30%–50% compared to traditional cooking methods. In addition, the qualitative data indicated widespread acceptance of the intervention concomitant with improved environmental health and quality of life outcomes. Participants reported improved health due to reduced smoke exposure, eye irritation, headaches, and an improved capacity for savings.&#x0D; Conclusion: The longitudinal nature of this study provides insight into the complexities of MMCBPR in the Global South. The findings show that small interventions, such as an improved cookstove, can improve the quality of life of individuals in marginalized communities if researchers are willing to invest the time that MMCBPR requires. Suggestions for future studies, especially for researchers seeking to expand MMCBPR beyond the boundaries of public health in North America, are discussed.

Teacher Use of School Connectedness Strategies With Underrepresented Youth in a Low-Income Middle School

Adolescents in low-income and rural communities are at a higher risk for mental health concerns. This study used a mixed-methods, community-based participatory research design to examine teachers’ experiences managing students with emotional and mental health needs in a low-income middle school serving underrepresented youth. Barriers to connecting positively with students included disruptive student behaviors, a lack of student interest, and an emphasis on accountability measures for academic achievement. Three themes emerged: (a) disruptive student behavior resulted in a whack-a-mole approach to managing emotional health needs; (b) learning was often put on the back burner as teachers attempted Maslow before Bloom; and (c) a lack of training and limited time to connect positively with students contributed to missed connections. Findings from this study indicate that additional resources and staff training are needed to help rural, low-income schools support students who have emotional and mental health needs.

Advancing Access to Healthcare through Telehealth: A Brownsville Community Assessment.

(1) Background: This paper focuses on the development of a community assessment for telehealth using an interprofessional lens, which sits at the intersection of public health and urban planning using multistakeholder input. The paper analyzes the process of designing and implementing a telemedicine plan for the City of Brownsville and its surrounding metros. (2) Methods: We employed an interprofessional approach to CBPR which assumed all stakeholders as equal partners alongside the researchers to uncover the most relevant and useful knowledge to inform the development of telehealth community assessment. (3) Results: Key findings include that: physicians do not have the technology, financial means, or staff to provide a comprehensive system for telemedicine; and due to language and literacy barriers, many patients are not able to use a web-based system of telemedicine. We also found that all stakeholders believe that telehealth is a convenient tool that has the capacity to increase patient access and care. (4) Conclusions: Ultimately, the use of an interprofessional community-based participatory research (CBPR) design allowed our team to bring together local knowledge with that of trained experts to advance the research efforts.

Perspectives on Collector Collaboration

AbstractIn 2019, we launched the Northern Arizona Paleoindian Project to expand on findings from the Rock Art Ranch (RAR) Research Experiences for Undergraduates (REU; NSF#1262184). The REU recovered 24 Paleoindian artifacts in association with drainages. Expansion of the research required mitigation of the patchwork landownership in the area, which encouraged a collector-collaboration model following Pitblado (2014) and Douglass et alia (2017). We held public events in collaboration with a network of agencies, avocational groups, collectors, and landowners to assess potential for Paleoindian archaeology in the area. In March 2020, however, the COVID-19 pandemic halted our efforts, allowing us to evaluate our project and practice. We find that tapping into existing local networks of responsible resource stewards (RRS) can greatly accelerate project development. We also find that private collections are endangered, and preserving this portion of the archaeological record requires documentation and long-term curation. Most importantly, we find that archaeologists working with collectors are uniquely positioned to build bridges between Indigenous communities, RRS, and professional archaeologists to help stabilize legacy collections and that this focus should drive collector-collaboration research design. Ultimately, the project must move toward a community-based participatory research design to seek equitable and culturally appropriate curation plans for local legacy collections.