NAU publications by CHER
Faculty & staff publications
NAU faculty and staff have the opportunity to publish their findings and knowledge as authors. CHER has many researchers that have been cited multiple times in major publications for their great work. The Center for Health Equity Research has accumulated all faculty publications into one, easy to navigate database.
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John, Brianna; Etsitty, Sean O; Greenfeld, Alex; Alsburg, Robert; Egge, Malyssa; Sandman, Sharon; George, Carmen; Curley, Caleigh; Curley, Cameron; Heer, Hendrik De D; Begay, Gloria; Ashley, Martin E; Yazzie, Del; Antone-Nez, Ramona; Shin, Sonya Sunhi; Bancroft, Carolyn Navajo Nation Stores Show Resilience During COVID-19 Pandemic Journal Article SOPHE, 23 (1), 2022. @article{John2022, title = {Navajo Nation Stores Show Resilience During COVID-19 Pandemic}, author = {Brianna John and Sean O. Etsitty and Alex Greenfeld and Robert Alsburg and Malyssa Egge and Sharon Sandman and Carmen George and Caleigh Curley and Cameron Curley and Hendrik D. De Heer and Gloria Begay and Martin E. Ashley and Del Yazzie and Ramona Antone-Nez and Sonya Sunhi Shin and Carolyn Bancroft}, url = {https://doi.org/10.1177/15248399221118393}, doi = {10.1177/15248399221118393}, year = {2022}, date = {2022-11-14}, journal = {SOPHE}, volume = {23}, number = {1}, abstract = {On April 8, 2020, the Navajo Nation issued an administrative order limiting business operations. Facing high coronavirus disease 2019 (COVID-19) rates and limited food infrastructure, a survey was conducted among Navajo Nation store managers to assess: (1) COVID-19 adaptations; (2) challenges; (3) changes in customer volume and purchasing; and (4) suggestions for additional support. Purposive sampling identified 29 stores in Navajo communities. Representatives from 20 stores (19 store managers/owners, 1 other; 7 grocery, and 13 convenience/other stores) were interviewed by phone or in-person to reach saturation (new information threshold < 5%). Responses were coded using frequencies and inductive thematic analysis. All 20 stores implemented COVID-19 guidelines (Centers for Disease Control and Prevention [CDC]/Navajo Nation) and most received orientation/support from local chapters, community organizations, or health centers. Stores implemented staff policies (50%, handwashing, vaccinations, protective personal equipment (PPE), sick leave, temperature checks), environmental changes (50%, hand sanitizer, checkout dividers), customer protocols (40%, limit customers, mask requirements, closed restrooms), and deep cleaning (40%). Most stores (65%) reported challenges including stress/anxiety, changing guidelines, supply chain and customer compliance; 30% reported infection or loss of staff. Weekday customer volume was slightly higher vs. pre-COVID, but weekend lower. Stores reported consistent or more healthy food purchases (50%), more nonfood essentials (20%), or shelf-stable foods (10%). Desired support included further orientation (30%), leadership support (20%), overtime/time to learn guidelines (20%), and signage/handouts (15%). Despite a high COVID-19 burden and limited food store infrastructure, Navajo Nation stores adapted by implementing staff, environmental and customer policies. Local support, staffing, and small store offerings were key factors in healthy food access.}, keywords = {}, pubstate = {published}, tppubtype = {article} } On April 8, 2020, the Navajo Nation issued an administrative order limiting business operations. Facing high coronavirus disease 2019 (COVID-19) rates and limited food infrastructure, a survey was conducted among Navajo Nation store managers to assess: (1) COVID-19 adaptations; (2) challenges; (3) changes in customer volume and purchasing; and (4) suggestions for additional support. Purposive sampling identified 29 stores in Navajo communities. Representatives from 20 stores (19 store managers/owners, 1 other; 7 grocery, and 13 convenience/other stores) were interviewed by phone or in-person to reach saturation (new information threshold < 5%). Responses were coded using frequencies and inductive thematic analysis. All 20 stores implemented COVID-19 guidelines (Centers for Disease Control and Prevention [CDC]/Navajo Nation) and most received orientation/support from local chapters, community organizations, or health centers. Stores implemented staff policies (50%, handwashing, vaccinations, protective personal equipment (PPE), sick leave, temperature checks), environmental changes (50%, hand sanitizer, checkout dividers), customer protocols (40%, limit customers, mask requirements, closed restrooms), and deep cleaning (40%). Most stores (65%) reported challenges including stress/anxiety, changing guidelines, supply chain and customer compliance; 30% reported infection or loss of staff. Weekday customer volume was slightly higher vs. pre-COVID, but weekend lower. Stores reported consistent or more healthy food purchases (50%), more nonfood essentials (20%), or shelf-stable foods (10%). Desired support included further orientation (30%), leadership support (20%), overtime/time to learn guidelines (20%), and signage/handouts (15%). Despite a high COVID-19 burden and limited food store infrastructure, Navajo Nation stores adapted by implementing staff, environmental and customer policies. Local support, staffing, and small store offerings were key factors in healthy food access. |
Rink, Elizabeth; Johnson, Olivia; Anastario, Michael; Firemoon, Paula; Peterson, Malory; Baldwin, Julie American Indian and Alaska Native Mental Health Research, 29 (2), pp. 32-48, 2022. @article{Rink2022b, title = {Adaptations Due to the COVID-19 Pandemic in a Community-Based Participatory Research Randomized Control Trial Examining Sexual and Reproductive Health Outcomes among American Indian Youth}, author = {Elizabeth Rink and Olivia Johnson and Michael Anastario and Paula Firemoon and Malory Peterson and Julie Baldwin}, url = {https://pubmed.ncbi.nlm.nih.gov/35881980/}, doi = {10.5820/aian.2902.2022.32}, year = {2022}, date = {2022-07-29}, journal = {American Indian and Alaska Native Mental Health Research}, volume = {29}, number = {2}, pages = {32-48}, abstract = {n this manuscript, we present changes in study design and analytical strategy due to the COVID-19 pandemic for Nen ŨnkUmbi/EdaHiYedo ("We Are Here Now," or NE). NE is a community-based participatory research multi-level randomized control trial using a stepped wedge design to address sexual and reproductive health disparities among American Indian youth. Adaptations in NE's research design, data collection, and analysis due to the COVID-19 pandemic were made based on meetings with tribally based research team members and outside non-Indigenous researchers involved in NE, as well as the study's Community Advisory Board and the Data Safety Monitoring Board. Based on these iterative discussions, decisions were made to: 1) reorganize the sequence of NE's stepped wedge design clusters, and 2) include additional quantitative and qualitative data collection and analysis in the research design that specifically addressed the impact of COVID-19 on the research participants. These adaptations have the potential to foster greater scientific knowledge in understanding how to address unanticipated 3-way interaction effects in randomized control trials with tribal communities. Findings can also contribute to understanding how public health disasters impact sexual and reproductive health among American Indian youth.}, keywords = {}, pubstate = {published}, tppubtype = {article} } n this manuscript, we present changes in study design and analytical strategy due to the COVID-19 pandemic for Nen ŨnkUmbi/EdaHiYedo ("We Are Here Now," or NE). NE is a community-based participatory research multi-level randomized control trial using a stepped wedge design to address sexual and reproductive health disparities among American Indian youth. Adaptations in NE's research design, data collection, and analysis due to the COVID-19 pandemic were made based on meetings with tribally based research team members and outside non-Indigenous researchers involved in NE, as well as the study's Community Advisory Board and the Data Safety Monitoring Board. Based on these iterative discussions, decisions were made to: 1) reorganize the sequence of NE's stepped wedge design clusters, and 2) include additional quantitative and qualitative data collection and analysis in the research design that specifically addressed the impact of COVID-19 on the research participants. These adaptations have the potential to foster greater scientific knowledge in understanding how to address unanticipated 3-way interaction effects in randomized control trials with tribal communities. Findings can also contribute to understanding how public health disasters impact sexual and reproductive health among American Indian youth. |
Rink, Elizabeth; Firemoon, Paula; Anastario, Michael; Johnson, Olivia; GrowingThunder, Ramey; Ricker, Adriann; Peterson, Malory; Baldwin, Julie Frontiers in Public Health, 10 , 2022. @article{Rink2022, title = {Rationale, Design, and Methods for Nen Unkumbi/Edahiyedo ("We Are Here Now"): A Multi-Level Randomized Controlled Trial to Improve Sexual and Reproductive Health Outcomes in a Northern Plains American Indian Reservation Community}, author = {Elizabeth Rink and Paula Firemoon and Michael Anastario and Olivia Johnson and Ramey GrowingThunder and Adriann Ricker and Malory Peterson and Julie Baldwin}, url = {https://www.frontiersin.org/articles/10.3389/fpubh.2022.823228/full}, doi = {10.3389/fpubh.2022.823228}, year = {2022}, date = {2022-07-13}, journal = {Frontiers in Public Health}, volume = {10}, abstract = {American Indian (AI) youth in the United States experience disproportionate sexual and reproductive health (SRH) disparities relative to their non-Indigenous, white counterparts, including increased rates of sexually transmitted infections (STIs), earlier sexual debut, increased rates of teen birth, and reduced access to SRH services. Past research shows that to improve SRH outcomes for AI youth in reservation communities, interventions must address complex factors and multiple levels of community that influence sexual risk behaviors. Here, we describe development of a multi-level, multi-component randomized controlled trial (RCT) to intervene upon SRH outcomes in a Northern Plains American Indian reservation community. Our intervention is rooted in a community based participatory research framework and is evaluated with a stepped wedge design that integrates 5 reservation high schools into a 5-year, cluster-randomized RCT. Ecological Systems Theory was used to design the intervention that includes (1) an individual level component of culturally specific SRH curriculum in school, (2) a parental component of education to improve parent-child communication about SRH and healthy relationships, (3) a community component of cultural mentorship, and (4) a systems-level component to improve delivery of SRH services from reservation healthcare agencies. In this article we present the rationale and details of our research design, instrumentation, data collection protocol, analytical methods, and community participation in the intervention. Our intervention builds upon existing community strengths and integrates traditional Indigenous knowledge and values with current public health knowledge to reduce SRH disparities.}, keywords = {}, pubstate = {published}, tppubtype = {article} } American Indian (AI) youth in the United States experience disproportionate sexual and reproductive health (SRH) disparities relative to their non-Indigenous, white counterparts, including increased rates of sexually transmitted infections (STIs), earlier sexual debut, increased rates of teen birth, and reduced access to SRH services. Past research shows that to improve SRH outcomes for AI youth in reservation communities, interventions must address complex factors and multiple levels of community that influence sexual risk behaviors. Here, we describe development of a multi-level, multi-component randomized controlled trial (RCT) to intervene upon SRH outcomes in a Northern Plains American Indian reservation community. Our intervention is rooted in a community based participatory research framework and is evaluated with a stepped wedge design that integrates 5 reservation high schools into a 5-year, cluster-randomized RCT. Ecological Systems Theory was used to design the intervention that includes (1) an individual level component of culturally specific SRH curriculum in school, (2) a parental component of education to improve parent-child communication about SRH and healthy relationships, (3) a community component of cultural mentorship, and (4) a systems-level component to improve delivery of SRH services from reservation healthcare agencies. In this article we present the rationale and details of our research design, instrumentation, data collection protocol, analytical methods, and community participation in the intervention. Our intervention builds upon existing community strengths and integrates traditional Indigenous knowledge and values with current public health knowledge to reduce SRH disparities. |
Camplain, Carolyn; Kirby, Christine; Barger, Steven D; Thomas, Heather; Tutt, Marissa; Elwell, Kristan; Young, Sara; Morrison, Gerlinda; Hyeoma, Stephanie; Baldwin, Julie A Community-based Participatory Research Approaches to Combat Oral Health Inequities Among American Indian and Alaska Native Populations Journal Article Journal of Public Health Dentistry, 82 (1), pp. 79-82, 2022. @article{Camplain2022d, title = {Community-based Participatory Research Approaches to Combat Oral Health Inequities Among American Indian and Alaska Native Populations}, author = {Carolyn Camplain and Christine Kirby and Steven D Barger and Heather Thomas and Marissa Tutt and Kristan Elwell and Sara Young and Gerlinda Morrison and Stephanie Hyeoma and Julie A Baldwin}, url = {https://onlinelibrary.wiley.com/doi/10.1111/jphd.12525}, doi = {10.1111/jphd.12525}, year = {2022}, date = {2022-06-21}, journal = {Journal of Public Health Dentistry}, volume = {82}, number = {1}, pages = {79-82}, abstract = {American Indian and Alaska Native (AI/AN) communities have experienced a history of systemic racism and still face significant oral health disparities. These disparities extend to the youngest community members in the form of early childhood caries (ECC). Although behavior and biology contribute to ECC, the conditions where people live, grow, and work, and the systems and political and economic forces that shape individual health outcomes, are thought to greatly impact ECC among AI/AN populations. To address ECC in AI/AN communities, we used a community based participatory approach that incorporated social determinants of health. We found that implementing culturally-tailored, culturally-centered, and AI/AN-created materials for ECC interventions is viewed favorably by community members and tribal leaders. Because of the complexity of ECC in AI/AN communities we adopted a bundled approach of best practices to reduce ECC including: (1) incorporating locally, contextually, and culturally relevant strategies to present recommended ECC prevention approaches; (2) employing AI/AN community members as educators; (3) utilizing motivational interviewing with expectant mothers; and (4) providing fluoride varnish. Our work underscores the importance of developing trusting partnerships with each other and with our communities, drawing upon the insights of community advisory board members, and eliciting formative assessment data from tribal members to gain a more holistic understanding of our participants' lived experience to design relevant intervention materials. Incorporating local knowledge and situating Western oral health prevention approaches within culturally aligned frameworks can enhance partnerships and create sustainable materials for community work.}, keywords = {}, pubstate = {published}, tppubtype = {article} } American Indian and Alaska Native (AI/AN) communities have experienced a history of systemic racism and still face significant oral health disparities. These disparities extend to the youngest community members in the form of early childhood caries (ECC). Although behavior and biology contribute to ECC, the conditions where people live, grow, and work, and the systems and political and economic forces that shape individual health outcomes, are thought to greatly impact ECC among AI/AN populations. To address ECC in AI/AN communities, we used a community based participatory approach that incorporated social determinants of health. We found that implementing culturally-tailored, culturally-centered, and AI/AN-created materials for ECC interventions is viewed favorably by community members and tribal leaders. Because of the complexity of ECC in AI/AN communities we adopted a bundled approach of best practices to reduce ECC including: (1) incorporating locally, contextually, and culturally relevant strategies to present recommended ECC prevention approaches; (2) employing AI/AN community members as educators; (3) utilizing motivational interviewing with expectant mothers; and (4) providing fluoride varnish. Our work underscores the importance of developing trusting partnerships with each other and with our communities, drawing upon the insights of community advisory board members, and eliciting formative assessment data from tribal members to gain a more holistic understanding of our participants' lived experience to design relevant intervention materials. Incorporating local knowledge and situating Western oral health prevention approaches within culturally aligned frameworks can enhance partnerships and create sustainable materials for community work. |
Williamson, Heather J; Chief, Carmenlita; Jiménez, Dulce; Begay, Andria; Milner, Trudie F; Sullivan, Shevaun; Torres, Emma; Remiker, Mark; Longorio, Alexandra Elvira Samarron; Sabo, Samantha; Teufel-Shone, Nicolette I Voices of Community Partners: Perspectives Gained from Conversations of Community-Based Participatory Research Experiences Journal Article International Journal of Environmental Research and Public Health, 2020. @article{Williamson2020b, title = {Voices of Community Partners: Perspectives Gained from Conversations of Community-Based Participatory Research Experiences}, author = {Heather J. Williamson and Carmenlita Chief and Dulce Jiménez and Andria Begay and Trudie F. Milner and Shevaun Sullivan and Emma Torres and Mark Remiker and Alexandra Elvira Samarron Longorio and Samantha Sabo and Nicolette I. Teufel-Shone}, url = {https://www.mdpi.com/1660-4601/17/14/5245}, doi = {10.3390/ijerph17145245}, year = {2020}, date = {2020-07-21}, journal = {International Journal of Environmental Research and Public Health}, abstract = {Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners’ insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner’s voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners’ insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner’s voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious. |
Yuan, Nicole P; Mayer, Brian M; Joshweseoma, Lorencita; Clichee, Dominic; Teufel-Shone, Nicolette I Progress in Community Health Partnerships: Research, Education, and Action, 14 (2), pp. 11, 2020. @article{Yuan2020, title = {Development of Guidelines to Improve the Effectiveness of Community Advisory Boards in Health Research. Progress in Community Health Partnerships: Research, Education, and Action}, author = {Nicole P Yuan and Brian M. Mayer and Lorencita Joshweseoma and Dominic Clichee and Nicolette I Teufel-Shone}, url = {https://arizona.pure.elsevier.com/en/publications/development-of-guidelines-to-improve-the-effectiveness-of-communi}, doi = {10.1353/cpr.2020.0026}, year = {2020}, date = {2020-06-01}, journal = {Progress in Community Health Partnerships: Research, Education, and Action}, volume = {14}, number = {2}, pages = {11}, abstract = {Community advisory boards (CABs) are a common community engagement strategy. Tools for developing CABs that are accessible to academic–community partnerships are limited. This article describes the process and partnership with the Hopi Tribe to develop CAB guidelines as a tool for research funded by the Center for Indigenous Environmental Health Research (CIEHR) and nonaffiliated projects. Methods: The CAB guidelines consist of three sections: formation, operation, and sustainability and evaluation. Each section includes best practices and interactive worksheets. The CAB guidelines were piloted with the Hopi Tribe to determine feasibility and relevance. Results: The CAB guidelines were well-received by the tribal CAB. Some of the worksheets were difficult to complete because they did not represent their perspectives or introduced potential tension in CAB interactions. Revisions were made accordingly. Conclusions: Future evaluation and broad dissemination of the CAB guidelines will promote the use and effectiveness of CABs in health research}, keywords = {}, pubstate = {published}, tppubtype = {article} } Community advisory boards (CABs) are a common community engagement strategy. Tools for developing CABs that are accessible to academic–community partnerships are limited. This article describes the process and partnership with the Hopi Tribe to develop CAB guidelines as a tool for research funded by the Center for Indigenous Environmental Health Research (CIEHR) and nonaffiliated projects. Methods: The CAB guidelines consist of three sections: formation, operation, and sustainability and evaluation. Each section includes best practices and interactive worksheets. The CAB guidelines were piloted with the Hopi Tribe to determine feasibility and relevance. Results: The CAB guidelines were well-received by the tribal CAB. Some of the worksheets were difficult to complete because they did not represent their perspectives or introduced potential tension in CAB interactions. Revisions were made accordingly. Conclusions: Future evaluation and broad dissemination of the CAB guidelines will promote the use and effectiveness of CABs in health research |
Baldwin, Julie A; Lowe, John; Brooks, Jada; Charbonneau-Dahlen, Barbara K; Lawrence, Gary; Johnson-Jennings, Michelle; Padgett, Gary; Kelley, Melessa; Camplain, Carolyn Health Promotion Practice, 2020. @article{Baldwin2020, title = {Formative Research and Cultural Tailoring of a Substance Abuse Prevention Program for American Indian Youth: Findings from the Intertribal Talking Circle Intervention}, author = {Julie A. Baldwin and John Lowe and Jada Brooks and Barbara K. Charbonneau-Dahlen and Gary Lawrence and Michelle Johnson-Jennings and Gary Padgett and Melessa Kelley and Carolyn Camplain}, url = {https://doi.org/10.1177/1524839920918551}, doi = {10.1177/1524839920918551}, year = {2020}, date = {2020-05-14}, journal = {Health Promotion Practice}, abstract = {Substance use among American Indians (AIs) is a critical health issue and accounts for many health problems such as chronic liver disease, cirrhosis, behavioral health conditions, homicide, suicide, and motor vehicle accidents. In 2013, the highest rates of substance use and dependence were seen among AIs when compared to all other population groups, although these rates vary across different tribes. Among AI adolescents, high rates of substance use have been associated with environmental and historical factors, including poverty, historical trauma, bicultural stress, and changing tribal/familial roles. Our project, the Intertribal Talking Circle intervention, involved adapting, tailoring, implementing, and evaluating an existing intervention for AI youth of three tribal communities in the United States. Formative Results. Community partnership committees (CPCs) identified alcohol, marijuana, and prescription medications as high priority substances. CPC concerns focused on the increasing substance use in their communities and the corresponding negative impacts on families, stating a lack of coping skills, positive role models, and hope for the future as concerns for youth. Cultural Tailoring Process Results. Each site formed a CPC that culturally tailored the intervention for their tribal community. This included translating Keetoowah-Cherokee language, cultural practices, and symbolism into the local tribal customs for relevance. The CPCs were essential for incorporating local context and perceived concerns around AI adolescent substance use. These results may be helpful to other tribal communities developing/implementing substance use prevention interventions for AI youth. It is critical that Indigenous cultures and local context be factored into such programs.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Substance use among American Indians (AIs) is a critical health issue and accounts for many health problems such as chronic liver disease, cirrhosis, behavioral health conditions, homicide, suicide, and motor vehicle accidents. In 2013, the highest rates of substance use and dependence were seen among AIs when compared to all other population groups, although these rates vary across different tribes. Among AI adolescents, high rates of substance use have been associated with environmental and historical factors, including poverty, historical trauma, bicultural stress, and changing tribal/familial roles. Our project, the Intertribal Talking Circle intervention, involved adapting, tailoring, implementing, and evaluating an existing intervention for AI youth of three tribal communities in the United States. Formative Results. Community partnership committees (CPCs) identified alcohol, marijuana, and prescription medications as high priority substances. CPC concerns focused on the increasing substance use in their communities and the corresponding negative impacts on families, stating a lack of coping skills, positive role models, and hope for the future as concerns for youth. Cultural Tailoring Process Results. Each site formed a CPC that culturally tailored the intervention for their tribal community. This included translating Keetoowah-Cherokee language, cultural practices, and symbolism into the local tribal customs for relevance. The CPCs were essential for incorporating local context and perceived concerns around AI adolescent substance use. These results may be helpful to other tribal communities developing/implementing substance use prevention interventions for AI youth. It is critical that Indigenous cultures and local context be factored into such programs. |
Williamson, Heather J; van Heumen, Lieke; Schwartz, Ariel E Photovoice with Individuals with Intellectual and/or Developmental Disabilities: Lessons Learned from Inclusive Research Efforts Journal Article Collaborations, 3 (1), 2020. @article{Williamson2020, title = {Photovoice with Individuals with Intellectual and/or Developmental Disabilities: Lessons Learned from Inclusive Research Efforts}, author = {Heather J. Williamson and Lieke van Heumen and Ariel E. Schwartz}, url = {http://doi.org/10.33596/coll.45}, doi = {http://doi.org/10.33596/coll.45}, year = {2020}, date = {2020-04-15}, journal = {Collaborations}, volume = {3}, number = {1}, abstract = {Inclusive research is an approach in which individuals with intellectual and/or developmental disabilities (IDD) are included as co-researchers throughout the research processes, and has demonstrated benefits for people with IDD. Because inclusive research is still not common within disability research, it is important for research teams to provide reflections and lessons learned to encourage future inclusive approaches. This paper provides case studies of two research projects completed in collaboration with adults with IDD using Photovoice as an approach that can increase access to the research process for co-researchers with IDD. Drawing upon previously defined inclusive research criteria, we reflect on lessons learned and challenges. Inclusive research requires time, flexibility, shared power, clear communication, and cultural humility. Across both studies, we discuss the importance of clear communication with Institutional Review Boards and collaboration with the extended support networks of individuals with IDD. We reflect on how the accessible nature of Photovoice supports inclusive research teams to combine the strengths of co-researchers with IDD and academically trained researchers, such that the knowledge production process is shifted to co-researchers with IDD.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Inclusive research is an approach in which individuals with intellectual and/or developmental disabilities (IDD) are included as co-researchers throughout the research processes, and has demonstrated benefits for people with IDD. Because inclusive research is still not common within disability research, it is important for research teams to provide reflections and lessons learned to encourage future inclusive approaches. This paper provides case studies of two research projects completed in collaboration with adults with IDD using Photovoice as an approach that can increase access to the research process for co-researchers with IDD. Drawing upon previously defined inclusive research criteria, we reflect on lessons learned and challenges. Inclusive research requires time, flexibility, shared power, clear communication, and cultural humility. Across both studies, we discuss the importance of clear communication with Institutional Review Boards and collaboration with the extended support networks of individuals with IDD. We reflect on how the accessible nature of Photovoice supports inclusive research teams to combine the strengths of co-researchers with IDD and academically trained researchers, such that the knowledge production process is shifted to co-researchers with IDD. |
Mayer, Alyssa B; McDermott, Robert J; Bryant, Carol A; Baldwin, Julie A; Kromrey, Jeffrey Sustainability of community-based health promotion coalitions: Putting theory into practice Journal Article Health Behavior and Policy Review, 4 (6), pp. 511-520, 2017. @article{Mayer2017, title = {Sustainability of community-based health promotion coalitions: Putting theory into practice}, author = {Alyssa B Mayer and Robert J McDermott and Carol A Bryant and Julie A Baldwin and Jeffrey Kromrey}, url = {http://ingentaconnect.com/contentone/psp/hbpr/2017/00000004/00000006/art00001;jsessionid=22whnsckp4hwq.x-ic-live-03}, year = {2017}, date = {2017-11-01}, journal = {Health Behavior and Policy Review}, volume = {4}, number = {6}, pages = {511-520}, abstract = {Objective: Despite their rich potential, community coalitions enjoy mixed success in effecting long-term population health improvement. A need exists for strategies that augment and sustain their functional success. We undertook a study to enhance definition of the elements of coalition success and sustainability that, in turn, may foster better achievement in community-based participatory research (CBPR) and concomitant health-related outcomes. Methods: We conducted in-depth, semi-structured interviews (N = 42) with academic researchers and their community coalition partners about the effectiveness of their collaborative endeavors. A grounded theory analysis of interview data informed the identification of domains and thematic elements influencing coalition effectiveness. Results: Seven domains emerged: (1) Characteristics related to coalition structure and processes; (2) Partner characteristics, eg, diversity, patience, flexibility, expertise; (3) Community characteristics, eg, capacity, ownership; (4) Partnership dynamics and synergy; (5) Tangible benefits; (6) Available resources, and; (7) Project characteristics. In all, 70 elements representing these domains influenced coalition effectiveness over time. Conclusions: These results extend our knowledge of factors contributing to coalition effectiveness and the sustainability of academic-community partnerships. Attention to these domains during key operational stages of CBPR initiatives is likely to have broad stakeholder benefits.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Objective: Despite their rich potential, community coalitions enjoy mixed success in effecting long-term population health improvement. A need exists for strategies that augment and sustain their functional success. We undertook a study to enhance definition of the elements of coalition success and sustainability that, in turn, may foster better achievement in community-based participatory research (CBPR) and concomitant health-related outcomes. Methods: We conducted in-depth, semi-structured interviews (N = 42) with academic researchers and their community coalition partners about the effectiveness of their collaborative endeavors. A grounded theory analysis of interview data informed the identification of domains and thematic elements influencing coalition effectiveness. Results: Seven domains emerged: (1) Characteristics related to coalition structure and processes; (2) Partner characteristics, eg, diversity, patience, flexibility, expertise; (3) Community characteristics, eg, capacity, ownership; (4) Partnership dynamics and synergy; (5) Tangible benefits; (6) Available resources, and; (7) Project characteristics. In all, 70 elements representing these domains influenced coalition effectiveness over time. Conclusions: These results extend our knowledge of factors contributing to coalition effectiveness and the sustainability of academic-community partnerships. Attention to these domains during key operational stages of CBPR initiatives is likely to have broad stakeholder benefits. |
Salinas-Miranda, Abraham; King, Lindsey M; Salihu, Hamisu M; Berry, Estrellita; Austin, Deborah; Nash, Susan; Scarborough, Kenneth; Best, Evangeline; Cox, Lillian; King, Georgette; Hepburn, Carrie; Burpee, Conchita; Richardson, Eugene; Ducket, Marlo; Briscoe, Richard; Baldwin, Julie A Exploring the life course perspective in maternal and child health through community-based participatory focus groups: Social risk assessment Journal Article Journal of Health Disparities Research and Practice, 10 (1), pp. 143-166, 2017. @article{Salinas-Miranda2017, title = {Exploring the life course perspective in maternal and child health through community-based participatory focus groups: Social risk assessment}, author = {Abraham Salinas-Miranda and Lindsey M King and Hamisu M Salihu and Estrellita Berry and Deborah Austin and Susan Nash and Kenneth Scarborough and Evangeline Best and Lillian Cox and Georgette King and Carrie Hepburn and Conchita Burpee and Eugene Richardson and Marlo Ducket and Richard Briscoe and Julie A Baldwin}, url = {https://digitalscholarship.unlv.edu/jhdrp/vol10/iss1/9/}, year = {2017}, date = {2017-04-20}, journal = {Journal of Health Disparities Research and Practice}, volume = {10}, number = {1}, pages = {143-166}, abstract = {Little is known about the patterns of risk factors experienced by communities of color and how diverse community contexts shape the health trajectory of women from the early childhood period to the time of their pregnancies. Thus, we conducted a focus group study to identify social risks over the life course that contribute to maternal and child health from the perspective of community members residing in low income urban areas. Ten community-based participatory focus groups were conducted with residents from selected communities in Tampa, Florida, from September to November 2013. We used the life course perspective to illuminate and explain the experiences reported by the interviewees. A total of 78 residents participated in the focus groups. Children and adolescents’ health risks were childhood obesity, lack of physical activity, and low self-esteem. Women’s health risks were low self-esteem, low educational level, low health literacy, inadequate parenting skills, and financial problems. Risks during pregnancy included stress, low self-esteem, inadequate eating patterns, lack of physical activity, healthcare issues, lack of social support, and lack of father involvement during pregnancy. Multiple risk factors contribute to maternal and child health in low income communities in Tampa Bay. The intersection of risk factors in different life periods suggest possible pathways, cumulative, and latent effects, which must be considered in future longitudinal studies and when developing effective maternal and child health programs and policies.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Little is known about the patterns of risk factors experienced by communities of color and how diverse community contexts shape the health trajectory of women from the early childhood period to the time of their pregnancies. Thus, we conducted a focus group study to identify social risks over the life course that contribute to maternal and child health from the perspective of community members residing in low income urban areas. Ten community-based participatory focus groups were conducted with residents from selected communities in Tampa, Florida, from September to November 2013. We used the life course perspective to illuminate and explain the experiences reported by the interviewees. A total of 78 residents participated in the focus groups. Children and adolescents’ health risks were childhood obesity, lack of physical activity, and low self-esteem. Women’s health risks were low self-esteem, low educational level, low health literacy, inadequate parenting skills, and financial problems. Risks during pregnancy included stress, low self-esteem, inadequate eating patterns, lack of physical activity, healthcare issues, lack of social support, and lack of father involvement during pregnancy. Multiple risk factors contribute to maternal and child health in low income communities in Tampa Bay. The intersection of risk factors in different life periods suggest possible pathways, cumulative, and latent effects, which must be considered in future longitudinal studies and when developing effective maternal and child health programs and policies. |
Ingram, Maia; Sabo, Samantha; Gomez, Sofia; Piper, Rosalinda; de Zapien, Jill Guernsey; Reinschmidt, Kerstin M; Schachter, Ken A; Carvajal, Scott C Progress in Community Health Partnerships: Research, Education, and Action, 9 (1), pp. 49-56, 2015. @article{Ingram2015, title = {Taking a community-based participatory research approach in the development of methods to measure a community health worker community advocacy intervention}, author = {Maia Ingram and Samantha Sabo and Sofia Gomez and Rosalinda Piper and Jill Guernsey de Zapien and Kerstin M Reinschmidt and Ken A Schachter and Scott C Carvajal}, url = {https://www.ncbi.nlm.nih.gov/pubmed/25981424}, doi = {10.1353/cpr.2015.0001}, year = {2015}, date = {2015-04-01}, journal = {Progress in Community Health Partnerships: Research, Education, and Action}, volume = {9}, number = {1}, pages = {49-56}, abstract = {BACKGROUND: Public health advocacy is by necessity responsive to shifting sociopolitical climates, and thus a challenge of advocacy research is that the intervention must by definition be adaptive. Moving beyond the classification of advocacy efforts to measurable indicators and outcomes of policy, therefore, requires a dynamic research approach. OBJECTIVES: The purposes of this article are to (1) describe use of the CBPR approach in the development and measurement of a community health worker (CHW) intervention designed to engage community members in public health advocacy and (2) provide a model for application of this approach in advocacy interventions addressing community-level systems and environmental change. METHODS: The Kingdon three streams model of policy change provided a theoretical framework for the intervention. Research and community partners collaboratively identified and documented intervention data. We describe five research methods used to monitor and measure CHW advocacy activities that both emerged from and influenced intervention activities. DISCUSSION: Encounter forms provided a longitudinal perspective of how CHWs engaged in advocacy activities in the three streams. Strategy maps defined desired advocacy outcomes and health benefits. Technical assistance notes identified and documented intermediate outcomes. Focus group and interview data reflected CHW efforts to engage community members in advocacy and the development of community leaders. APPLICATION OF LESSONS LEARNED: We provide a model for application of key principles of CPBR that are vital to effectively capturing the overarching and nuanced aspects of public health advocacy work in dynamic political and organizational environments.}, keywords = {}, pubstate = {published}, tppubtype = {article} } BACKGROUND: Public health advocacy is by necessity responsive to shifting sociopolitical climates, and thus a challenge of advocacy research is that the intervention must by definition be adaptive. Moving beyond the classification of advocacy efforts to measurable indicators and outcomes of policy, therefore, requires a dynamic research approach. OBJECTIVES: The purposes of this article are to (1) describe use of the CBPR approach in the development and measurement of a community health worker (CHW) intervention designed to engage community members in public health advocacy and (2) provide a model for application of this approach in advocacy interventions addressing community-level systems and environmental change. METHODS: The Kingdon three streams model of policy change provided a theoretical framework for the intervention. Research and community partners collaboratively identified and documented intervention data. We describe five research methods used to monitor and measure CHW advocacy activities that both emerged from and influenced intervention activities. DISCUSSION: Encounter forms provided a longitudinal perspective of how CHWs engaged in advocacy activities in the three streams. Strategy maps defined desired advocacy outcomes and health benefits. Technical assistance notes identified and documented intermediate outcomes. Focus group and interview data reflected CHW efforts to engage community members in advocacy and the development of community leaders. APPLICATION OF LESSONS LEARNED: We provide a model for application of key principles of CPBR that are vital to effectively capturing the overarching and nuanced aspects of public health advocacy work in dynamic political and organizational environments. |
Ingram, Maia; Schachter, Ken A; Sabo, Samantha; Reinschmidt, Kerstin M; Gomez, Sofia; Zapien, Jill Guernsey De; Carvajal, Scott C A community health worker intervention to address the social determinants of health through policy change Journal Article The Journal of primary Prevention, 35 (2), pp. 119-123, 2014. @article{Ingram2014, title = {A community health worker intervention to address the social determinants of health through policy change}, author = {Maia Ingram and Ken A Schachter and Samantha Sabo and Kerstin M Reinschmidt and Sofia Gomez and Jill Guernsey De Zapien and Scott C Carvajal}, url = {https://www.ncbi.nlm.nih.gov/pubmed/24363179}, doi = {10.1007/s10935-013-0335-y}, year = {2014}, date = {2014-04-01}, journal = {The Journal of primary Prevention}, volume = {35}, number = {2}, pages = {119-123}, abstract = {Public policy that seeks to achieve sustainable improvements in the social determinants of health, such as income, education, housing, food security and neighborhood conditions, can create positive and sustainable health effects. This paper describes preliminary results of Acción para la Salud, a public health intervention in which Community health workers (CHWs) from five health agencies engaged their community in the process of making positive systems and environmental changes. Academic-community partners trained Acción CHWs in community advocacy and provided ongoing technical assistance in developing strategic advocacy plans. The CHWs documented community advocacy activities through encounter forms in which they identified problems, formulated solutions, and described systems and policy change efforts. Strategy maps described the steps of the advocacy plans. Findings demonstrate that CHWs worked to initiate discussions about underlying social determinants and environment-related factors that impact health, and identified solutions to improve neighborhood conditions, create community opportunities, and increase access to services.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Public policy that seeks to achieve sustainable improvements in the social determinants of health, such as income, education, housing, food security and neighborhood conditions, can create positive and sustainable health effects. This paper describes preliminary results of Acción para la Salud, a public health intervention in which Community health workers (CHWs) from five health agencies engaged their community in the process of making positive systems and environmental changes. Academic-community partners trained Acción CHWs in community advocacy and provided ongoing technical assistance in developing strategic advocacy plans. The CHWs documented community advocacy activities through encounter forms in which they identified problems, formulated solutions, and described systems and policy change efforts. Strategy maps described the steps of the advocacy plans. Findings demonstrate that CHWs worked to initiate discussions about underlying social determinants and environment-related factors that impact health, and identified solutions to improve neighborhood conditions, create community opportunities, and increase access to services. |
Gwede, Clement K; Ashley, Atalie A; McGinnis, Kara; Montiel-Ishino, Alejandro F; Standifer, Maisha; Baldwin, Julie A; Williams, Coni; Sneed, Kevin B; Wathington, Deanna; Dash-Pitts, Lolita; Green, Lee B Designing a community-based lay health advisor training curriculum to address cancer health disparities Journal Article Health Promotion Practice, 14 (3), pp. 415-424, 2013. @article{Gwede2013, title = {Designing a community-based lay health advisor training curriculum to address cancer health disparities}, author = {Clement K Gwede and Atalie A Ashley and Kara McGinnis and Alejandro F Montiel-Ishino and Maisha Standifer and Julie A Baldwin and Coni Williams and Kevin B Sneed and Deanna Wathington and Lolita Dash-Pitts and Lee B Green}, url = {https://www.ncbi.nlm.nih.gov/pubmed/22982709}, doi = {10.1177/1524839912458675}, year = {2013}, date = {2013-05-01}, journal = {Health Promotion Practice}, volume = {14}, number = {3}, pages = {415-424}, abstract = {INTRODUCTION: Racial and ethnic minorities have disproportionately higher cancer incidence and mortality than their White counterparts. In response to this inequity in cancer prevention and care, community-based lay health advisors (LHAs) may be suited to deliver effective, culturally relevant, quality cancer education, prevention/screening, and early detection services for underserved populations. APPROACH AND STRATEGIES: Consistent with key tenets of community-based participatory research (CBPR), this project engaged community partners to develop and implement a unique LHA training curriculum to address cancer health disparities among medically underserved communities in a tricounty area. Seven phases of curriculum development went into designing a final seven-module LHA curriculum. In keeping with principles of CBPR and community engagement, academic-community partners and LHAs themselves were involved at all phases to ensure the needs of academic and community partners were mutually addressed in development and implementation of the LHA program. DISCUSSION AND CONCLUSIONS: Community-based LHA programs for outreach, education, and promotion of cancer screening and early detection, are ideal for addressing cancer health disparities in access and quality care. When community-based LHAs are appropriately recruited, trained, and located in communities, they provide unique opportunities to link, bridge, and facilitate quality cancer education, services, and research.}, keywords = {}, pubstate = {published}, tppubtype = {article} } INTRODUCTION: Racial and ethnic minorities have disproportionately higher cancer incidence and mortality than their White counterparts. In response to this inequity in cancer prevention and care, community-based lay health advisors (LHAs) may be suited to deliver effective, culturally relevant, quality cancer education, prevention/screening, and early detection services for underserved populations. APPROACH AND STRATEGIES: Consistent with key tenets of community-based participatory research (CBPR), this project engaged community partners to develop and implement a unique LHA training curriculum to address cancer health disparities among medically underserved communities in a tricounty area. Seven phases of curriculum development went into designing a final seven-module LHA curriculum. In keeping with principles of CBPR and community engagement, academic-community partners and LHAs themselves were involved at all phases to ensure the needs of academic and community partners were mutually addressed in development and implementation of the LHA program. DISCUSSION AND CONCLUSIONS: Community-based LHA programs for outreach, education, and promotion of cancer screening and early detection, are ideal for addressing cancer health disparities in access and quality care. When community-based LHAs are appropriately recruited, trained, and located in communities, they provide unique opportunities to link, bridge, and facilitate quality cancer education, services, and research. |
Teufel-Shone, Nicolette Community-based participatory research and the academic system of rewards Journal Article Virtual Mentor- American Medical Association Journal of Ethics, 13 (2), pp. 118-123, 2011. @article{Teufel-Shone2011, title = {Community-based participatory research and the academic system of rewards}, author = {Nicolette Teufel-Shone}, url = {http://journalofethics.ama-assn.org/2011/02/pfor1-1102.html}, year = {2011}, date = {2011-02-01}, journal = {Virtual Mentor- American Medical Association Journal of Ethics}, volume = {13}, number = {2}, pages = {118-123}, abstract = {The National Institute of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Robert Wood Johnson Foundation (RWJF), and other primary funders of health-related research have identified community-based participatory research (CBPR) as essential to deepening our scientific knowledge of health promotion and disease prevention and reducing racial and ethnic health disparities [2-5]. The Institute of Medicine (IOM) has named CBPR as one of eight competencies for all health professional students [6]. Yet, as an expanding cohort of junior university-based CBP researchers proceed through the academic system—specifically through the promotion and tenure process—many continue to be reviewed using the standards developed for non-CBP researchers. As stated in Calleson et al.’s seminal article recommending change, “If we want faculty to be involved in communities but reward them for other activities, we are our own worst enemies” [7].}, keywords = {}, pubstate = {published}, tppubtype = {article} } The National Institute of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Robert Wood Johnson Foundation (RWJF), and other primary funders of health-related research have identified community-based participatory research (CBPR) as essential to deepening our scientific knowledge of health promotion and disease prevention and reducing racial and ethnic health disparities [2-5]. The Institute of Medicine (IOM) has named CBPR as one of eight competencies for all health professional students [6]. Yet, as an expanding cohort of junior university-based CBP researchers proceed through the academic system—specifically through the promotion and tenure process—many continue to be reviewed using the standards developed for non-CBP researchers. As stated in Calleson et al.’s seminal article recommending change, “If we want faculty to be involved in communities but reward them for other activities, we are our own worst enemies” [7]. |
2022 |
John, Brianna; Etsitty, Sean O; Greenfeld, Alex; Alsburg, Robert; Egge, Malyssa; Sandman, Sharon; George, Carmen; Curley, Caleigh; Curley, Cameron; Heer, Hendrik De D; Begay, Gloria; Ashley, Martin E; Yazzie, Del; Antone-Nez, Ramona; Shin, Sonya Sunhi; Bancroft, Carolyn Navajo Nation Stores Show Resilience During COVID-19 Pandemic Journal Article SOPHE, 23 (1), 2022. @article{John2022, title = {Navajo Nation Stores Show Resilience During COVID-19 Pandemic}, author = {Brianna John and Sean O. Etsitty and Alex Greenfeld and Robert Alsburg and Malyssa Egge and Sharon Sandman and Carmen George and Caleigh Curley and Cameron Curley and Hendrik D. De Heer and Gloria Begay and Martin E. Ashley and Del Yazzie and Ramona Antone-Nez and Sonya Sunhi Shin and Carolyn Bancroft}, url = {https://doi.org/10.1177/15248399221118393}, doi = {10.1177/15248399221118393}, year = {2022}, date = {2022-11-14}, journal = {SOPHE}, volume = {23}, number = {1}, abstract = {On April 8, 2020, the Navajo Nation issued an administrative order limiting business operations. Facing high coronavirus disease 2019 (COVID-19) rates and limited food infrastructure, a survey was conducted among Navajo Nation store managers to assess: (1) COVID-19 adaptations; (2) challenges; (3) changes in customer volume and purchasing; and (4) suggestions for additional support. Purposive sampling identified 29 stores in Navajo communities. Representatives from 20 stores (19 store managers/owners, 1 other; 7 grocery, and 13 convenience/other stores) were interviewed by phone or in-person to reach saturation (new information threshold < 5%). Responses were coded using frequencies and inductive thematic analysis. All 20 stores implemented COVID-19 guidelines (Centers for Disease Control and Prevention [CDC]/Navajo Nation) and most received orientation/support from local chapters, community organizations, or health centers. Stores implemented staff policies (50%, handwashing, vaccinations, protective personal equipment (PPE), sick leave, temperature checks), environmental changes (50%, hand sanitizer, checkout dividers), customer protocols (40%, limit customers, mask requirements, closed restrooms), and deep cleaning (40%). Most stores (65%) reported challenges including stress/anxiety, changing guidelines, supply chain and customer compliance; 30% reported infection or loss of staff. Weekday customer volume was slightly higher vs. pre-COVID, but weekend lower. Stores reported consistent or more healthy food purchases (50%), more nonfood essentials (20%), or shelf-stable foods (10%). Desired support included further orientation (30%), leadership support (20%), overtime/time to learn guidelines (20%), and signage/handouts (15%). Despite a high COVID-19 burden and limited food store infrastructure, Navajo Nation stores adapted by implementing staff, environmental and customer policies. Local support, staffing, and small store offerings were key factors in healthy food access.}, keywords = {}, pubstate = {published}, tppubtype = {article} } On April 8, 2020, the Navajo Nation issued an administrative order limiting business operations. Facing high coronavirus disease 2019 (COVID-19) rates and limited food infrastructure, a survey was conducted among Navajo Nation store managers to assess: (1) COVID-19 adaptations; (2) challenges; (3) changes in customer volume and purchasing; and (4) suggestions for additional support. Purposive sampling identified 29 stores in Navajo communities. Representatives from 20 stores (19 store managers/owners, 1 other; 7 grocery, and 13 convenience/other stores) were interviewed by phone or in-person to reach saturation (new information threshold < 5%). Responses were coded using frequencies and inductive thematic analysis. All 20 stores implemented COVID-19 guidelines (Centers for Disease Control and Prevention [CDC]/Navajo Nation) and most received orientation/support from local chapters, community organizations, or health centers. Stores implemented staff policies (50%, handwashing, vaccinations, protective personal equipment (PPE), sick leave, temperature checks), environmental changes (50%, hand sanitizer, checkout dividers), customer protocols (40%, limit customers, mask requirements, closed restrooms), and deep cleaning (40%). Most stores (65%) reported challenges including stress/anxiety, changing guidelines, supply chain and customer compliance; 30% reported infection or loss of staff. Weekday customer volume was slightly higher vs. pre-COVID, but weekend lower. Stores reported consistent or more healthy food purchases (50%), more nonfood essentials (20%), or shelf-stable foods (10%). Desired support included further orientation (30%), leadership support (20%), overtime/time to learn guidelines (20%), and signage/handouts (15%). Despite a high COVID-19 burden and limited food store infrastructure, Navajo Nation stores adapted by implementing staff, environmental and customer policies. Local support, staffing, and small store offerings were key factors in healthy food access. |
Rink, Elizabeth; Johnson, Olivia; Anastario, Michael; Firemoon, Paula; Peterson, Malory; Baldwin, Julie American Indian and Alaska Native Mental Health Research, 29 (2), pp. 32-48, 2022. @article{Rink2022b, title = {Adaptations Due to the COVID-19 Pandemic in a Community-Based Participatory Research Randomized Control Trial Examining Sexual and Reproductive Health Outcomes among American Indian Youth}, author = {Elizabeth Rink and Olivia Johnson and Michael Anastario and Paula Firemoon and Malory Peterson and Julie Baldwin}, url = {https://pubmed.ncbi.nlm.nih.gov/35881980/}, doi = {10.5820/aian.2902.2022.32}, year = {2022}, date = {2022-07-29}, journal = {American Indian and Alaska Native Mental Health Research}, volume = {29}, number = {2}, pages = {32-48}, abstract = {n this manuscript, we present changes in study design and analytical strategy due to the COVID-19 pandemic for Nen ŨnkUmbi/EdaHiYedo ("We Are Here Now," or NE). NE is a community-based participatory research multi-level randomized control trial using a stepped wedge design to address sexual and reproductive health disparities among American Indian youth. Adaptations in NE's research design, data collection, and analysis due to the COVID-19 pandemic were made based on meetings with tribally based research team members and outside non-Indigenous researchers involved in NE, as well as the study's Community Advisory Board and the Data Safety Monitoring Board. Based on these iterative discussions, decisions were made to: 1) reorganize the sequence of NE's stepped wedge design clusters, and 2) include additional quantitative and qualitative data collection and analysis in the research design that specifically addressed the impact of COVID-19 on the research participants. These adaptations have the potential to foster greater scientific knowledge in understanding how to address unanticipated 3-way interaction effects in randomized control trials with tribal communities. Findings can also contribute to understanding how public health disasters impact sexual and reproductive health among American Indian youth.}, keywords = {}, pubstate = {published}, tppubtype = {article} } n this manuscript, we present changes in study design and analytical strategy due to the COVID-19 pandemic for Nen ŨnkUmbi/EdaHiYedo ("We Are Here Now," or NE). NE is a community-based participatory research multi-level randomized control trial using a stepped wedge design to address sexual and reproductive health disparities among American Indian youth. Adaptations in NE's research design, data collection, and analysis due to the COVID-19 pandemic were made based on meetings with tribally based research team members and outside non-Indigenous researchers involved in NE, as well as the study's Community Advisory Board and the Data Safety Monitoring Board. Based on these iterative discussions, decisions were made to: 1) reorganize the sequence of NE's stepped wedge design clusters, and 2) include additional quantitative and qualitative data collection and analysis in the research design that specifically addressed the impact of COVID-19 on the research participants. These adaptations have the potential to foster greater scientific knowledge in understanding how to address unanticipated 3-way interaction effects in randomized control trials with tribal communities. Findings can also contribute to understanding how public health disasters impact sexual and reproductive health among American Indian youth. |
Rink, Elizabeth; Firemoon, Paula; Anastario, Michael; Johnson, Olivia; GrowingThunder, Ramey; Ricker, Adriann; Peterson, Malory; Baldwin, Julie Frontiers in Public Health, 10 , 2022. @article{Rink2022, title = {Rationale, Design, and Methods for Nen Unkumbi/Edahiyedo ("We Are Here Now"): A Multi-Level Randomized Controlled Trial to Improve Sexual and Reproductive Health Outcomes in a Northern Plains American Indian Reservation Community}, author = {Elizabeth Rink and Paula Firemoon and Michael Anastario and Olivia Johnson and Ramey GrowingThunder and Adriann Ricker and Malory Peterson and Julie Baldwin}, url = {https://www.frontiersin.org/articles/10.3389/fpubh.2022.823228/full}, doi = {10.3389/fpubh.2022.823228}, year = {2022}, date = {2022-07-13}, journal = {Frontiers in Public Health}, volume = {10}, abstract = {American Indian (AI) youth in the United States experience disproportionate sexual and reproductive health (SRH) disparities relative to their non-Indigenous, white counterparts, including increased rates of sexually transmitted infections (STIs), earlier sexual debut, increased rates of teen birth, and reduced access to SRH services. Past research shows that to improve SRH outcomes for AI youth in reservation communities, interventions must address complex factors and multiple levels of community that influence sexual risk behaviors. Here, we describe development of a multi-level, multi-component randomized controlled trial (RCT) to intervene upon SRH outcomes in a Northern Plains American Indian reservation community. Our intervention is rooted in a community based participatory research framework and is evaluated with a stepped wedge design that integrates 5 reservation high schools into a 5-year, cluster-randomized RCT. Ecological Systems Theory was used to design the intervention that includes (1) an individual level component of culturally specific SRH curriculum in school, (2) a parental component of education to improve parent-child communication about SRH and healthy relationships, (3) a community component of cultural mentorship, and (4) a systems-level component to improve delivery of SRH services from reservation healthcare agencies. In this article we present the rationale and details of our research design, instrumentation, data collection protocol, analytical methods, and community participation in the intervention. Our intervention builds upon existing community strengths and integrates traditional Indigenous knowledge and values with current public health knowledge to reduce SRH disparities.}, keywords = {}, pubstate = {published}, tppubtype = {article} } American Indian (AI) youth in the United States experience disproportionate sexual and reproductive health (SRH) disparities relative to their non-Indigenous, white counterparts, including increased rates of sexually transmitted infections (STIs), earlier sexual debut, increased rates of teen birth, and reduced access to SRH services. Past research shows that to improve SRH outcomes for AI youth in reservation communities, interventions must address complex factors and multiple levels of community that influence sexual risk behaviors. Here, we describe development of a multi-level, multi-component randomized controlled trial (RCT) to intervene upon SRH outcomes in a Northern Plains American Indian reservation community. Our intervention is rooted in a community based participatory research framework and is evaluated with a stepped wedge design that integrates 5 reservation high schools into a 5-year, cluster-randomized RCT. Ecological Systems Theory was used to design the intervention that includes (1) an individual level component of culturally specific SRH curriculum in school, (2) a parental component of education to improve parent-child communication about SRH and healthy relationships, (3) a community component of cultural mentorship, and (4) a systems-level component to improve delivery of SRH services from reservation healthcare agencies. In this article we present the rationale and details of our research design, instrumentation, data collection protocol, analytical methods, and community participation in the intervention. Our intervention builds upon existing community strengths and integrates traditional Indigenous knowledge and values with current public health knowledge to reduce SRH disparities. |
Camplain, Carolyn; Kirby, Christine; Barger, Steven D; Thomas, Heather; Tutt, Marissa; Elwell, Kristan; Young, Sara; Morrison, Gerlinda; Hyeoma, Stephanie; Baldwin, Julie A Community-based Participatory Research Approaches to Combat Oral Health Inequities Among American Indian and Alaska Native Populations Journal Article Journal of Public Health Dentistry, 82 (1), pp. 79-82, 2022. @article{Camplain2022d, title = {Community-based Participatory Research Approaches to Combat Oral Health Inequities Among American Indian and Alaska Native Populations}, author = {Carolyn Camplain and Christine Kirby and Steven D Barger and Heather Thomas and Marissa Tutt and Kristan Elwell and Sara Young and Gerlinda Morrison and Stephanie Hyeoma and Julie A Baldwin}, url = {https://onlinelibrary.wiley.com/doi/10.1111/jphd.12525}, doi = {10.1111/jphd.12525}, year = {2022}, date = {2022-06-21}, journal = {Journal of Public Health Dentistry}, volume = {82}, number = {1}, pages = {79-82}, abstract = {American Indian and Alaska Native (AI/AN) communities have experienced a history of systemic racism and still face significant oral health disparities. These disparities extend to the youngest community members in the form of early childhood caries (ECC). Although behavior and biology contribute to ECC, the conditions where people live, grow, and work, and the systems and political and economic forces that shape individual health outcomes, are thought to greatly impact ECC among AI/AN populations. To address ECC in AI/AN communities, we used a community based participatory approach that incorporated social determinants of health. We found that implementing culturally-tailored, culturally-centered, and AI/AN-created materials for ECC interventions is viewed favorably by community members and tribal leaders. Because of the complexity of ECC in AI/AN communities we adopted a bundled approach of best practices to reduce ECC including: (1) incorporating locally, contextually, and culturally relevant strategies to present recommended ECC prevention approaches; (2) employing AI/AN community members as educators; (3) utilizing motivational interviewing with expectant mothers; and (4) providing fluoride varnish. Our work underscores the importance of developing trusting partnerships with each other and with our communities, drawing upon the insights of community advisory board members, and eliciting formative assessment data from tribal members to gain a more holistic understanding of our participants' lived experience to design relevant intervention materials. Incorporating local knowledge and situating Western oral health prevention approaches within culturally aligned frameworks can enhance partnerships and create sustainable materials for community work.}, keywords = {}, pubstate = {published}, tppubtype = {article} } American Indian and Alaska Native (AI/AN) communities have experienced a history of systemic racism and still face significant oral health disparities. These disparities extend to the youngest community members in the form of early childhood caries (ECC). Although behavior and biology contribute to ECC, the conditions where people live, grow, and work, and the systems and political and economic forces that shape individual health outcomes, are thought to greatly impact ECC among AI/AN populations. To address ECC in AI/AN communities, we used a community based participatory approach that incorporated social determinants of health. We found that implementing culturally-tailored, culturally-centered, and AI/AN-created materials for ECC interventions is viewed favorably by community members and tribal leaders. Because of the complexity of ECC in AI/AN communities we adopted a bundled approach of best practices to reduce ECC including: (1) incorporating locally, contextually, and culturally relevant strategies to present recommended ECC prevention approaches; (2) employing AI/AN community members as educators; (3) utilizing motivational interviewing with expectant mothers; and (4) providing fluoride varnish. Our work underscores the importance of developing trusting partnerships with each other and with our communities, drawing upon the insights of community advisory board members, and eliciting formative assessment data from tribal members to gain a more holistic understanding of our participants' lived experience to design relevant intervention materials. Incorporating local knowledge and situating Western oral health prevention approaches within culturally aligned frameworks can enhance partnerships and create sustainable materials for community work. |
2020 |
Williamson, Heather J; Chief, Carmenlita; Jiménez, Dulce; Begay, Andria; Milner, Trudie F; Sullivan, Shevaun; Torres, Emma; Remiker, Mark; Longorio, Alexandra Elvira Samarron; Sabo, Samantha; Teufel-Shone, Nicolette I Voices of Community Partners: Perspectives Gained from Conversations of Community-Based Participatory Research Experiences Journal Article International Journal of Environmental Research and Public Health, 2020. @article{Williamson2020b, title = {Voices of Community Partners: Perspectives Gained from Conversations of Community-Based Participatory Research Experiences}, author = {Heather J. Williamson and Carmenlita Chief and Dulce Jiménez and Andria Begay and Trudie F. Milner and Shevaun Sullivan and Emma Torres and Mark Remiker and Alexandra Elvira Samarron Longorio and Samantha Sabo and Nicolette I. Teufel-Shone}, url = {https://www.mdpi.com/1660-4601/17/14/5245}, doi = {10.3390/ijerph17145245}, year = {2020}, date = {2020-07-21}, journal = {International Journal of Environmental Research and Public Health}, abstract = {Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners’ insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner’s voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners’ insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner’s voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious. |
Yuan, Nicole P; Mayer, Brian M; Joshweseoma, Lorencita; Clichee, Dominic; Teufel-Shone, Nicolette I Progress in Community Health Partnerships: Research, Education, and Action, 14 (2), pp. 11, 2020. @article{Yuan2020, title = {Development of Guidelines to Improve the Effectiveness of Community Advisory Boards in Health Research. Progress in Community Health Partnerships: Research, Education, and Action}, author = {Nicole P Yuan and Brian M. Mayer and Lorencita Joshweseoma and Dominic Clichee and Nicolette I Teufel-Shone}, url = {https://arizona.pure.elsevier.com/en/publications/development-of-guidelines-to-improve-the-effectiveness-of-communi}, doi = {10.1353/cpr.2020.0026}, year = {2020}, date = {2020-06-01}, journal = {Progress in Community Health Partnerships: Research, Education, and Action}, volume = {14}, number = {2}, pages = {11}, abstract = {Community advisory boards (CABs) are a common community engagement strategy. Tools for developing CABs that are accessible to academic–community partnerships are limited. This article describes the process and partnership with the Hopi Tribe to develop CAB guidelines as a tool for research funded by the Center for Indigenous Environmental Health Research (CIEHR) and nonaffiliated projects. Methods: The CAB guidelines consist of three sections: formation, operation, and sustainability and evaluation. Each section includes best practices and interactive worksheets. The CAB guidelines were piloted with the Hopi Tribe to determine feasibility and relevance. Results: The CAB guidelines were well-received by the tribal CAB. Some of the worksheets were difficult to complete because they did not represent their perspectives or introduced potential tension in CAB interactions. Revisions were made accordingly. Conclusions: Future evaluation and broad dissemination of the CAB guidelines will promote the use and effectiveness of CABs in health research}, keywords = {}, pubstate = {published}, tppubtype = {article} } Community advisory boards (CABs) are a common community engagement strategy. Tools for developing CABs that are accessible to academic–community partnerships are limited. This article describes the process and partnership with the Hopi Tribe to develop CAB guidelines as a tool for research funded by the Center for Indigenous Environmental Health Research (CIEHR) and nonaffiliated projects. Methods: The CAB guidelines consist of three sections: formation, operation, and sustainability and evaluation. Each section includes best practices and interactive worksheets. The CAB guidelines were piloted with the Hopi Tribe to determine feasibility and relevance. Results: The CAB guidelines were well-received by the tribal CAB. Some of the worksheets were difficult to complete because they did not represent their perspectives or introduced potential tension in CAB interactions. Revisions were made accordingly. Conclusions: Future evaluation and broad dissemination of the CAB guidelines will promote the use and effectiveness of CABs in health research |
Baldwin, Julie A; Lowe, John; Brooks, Jada; Charbonneau-Dahlen, Barbara K; Lawrence, Gary; Johnson-Jennings, Michelle; Padgett, Gary; Kelley, Melessa; Camplain, Carolyn Health Promotion Practice, 2020. @article{Baldwin2020, title = {Formative Research and Cultural Tailoring of a Substance Abuse Prevention Program for American Indian Youth: Findings from the Intertribal Talking Circle Intervention}, author = {Julie A. Baldwin and John Lowe and Jada Brooks and Barbara K. Charbonneau-Dahlen and Gary Lawrence and Michelle Johnson-Jennings and Gary Padgett and Melessa Kelley and Carolyn Camplain}, url = {https://doi.org/10.1177/1524839920918551}, doi = {10.1177/1524839920918551}, year = {2020}, date = {2020-05-14}, journal = {Health Promotion Practice}, abstract = {Substance use among American Indians (AIs) is a critical health issue and accounts for many health problems such as chronic liver disease, cirrhosis, behavioral health conditions, homicide, suicide, and motor vehicle accidents. In 2013, the highest rates of substance use and dependence were seen among AIs when compared to all other population groups, although these rates vary across different tribes. Among AI adolescents, high rates of substance use have been associated with environmental and historical factors, including poverty, historical trauma, bicultural stress, and changing tribal/familial roles. Our project, the Intertribal Talking Circle intervention, involved adapting, tailoring, implementing, and evaluating an existing intervention for AI youth of three tribal communities in the United States. Formative Results. Community partnership committees (CPCs) identified alcohol, marijuana, and prescription medications as high priority substances. CPC concerns focused on the increasing substance use in their communities and the corresponding negative impacts on families, stating a lack of coping skills, positive role models, and hope for the future as concerns for youth. Cultural Tailoring Process Results. Each site formed a CPC that culturally tailored the intervention for their tribal community. This included translating Keetoowah-Cherokee language, cultural practices, and symbolism into the local tribal customs for relevance. The CPCs were essential for incorporating local context and perceived concerns around AI adolescent substance use. These results may be helpful to other tribal communities developing/implementing substance use prevention interventions for AI youth. It is critical that Indigenous cultures and local context be factored into such programs.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Substance use among American Indians (AIs) is a critical health issue and accounts for many health problems such as chronic liver disease, cirrhosis, behavioral health conditions, homicide, suicide, and motor vehicle accidents. In 2013, the highest rates of substance use and dependence were seen among AIs when compared to all other population groups, although these rates vary across different tribes. Among AI adolescents, high rates of substance use have been associated with environmental and historical factors, including poverty, historical trauma, bicultural stress, and changing tribal/familial roles. Our project, the Intertribal Talking Circle intervention, involved adapting, tailoring, implementing, and evaluating an existing intervention for AI youth of three tribal communities in the United States. Formative Results. Community partnership committees (CPCs) identified alcohol, marijuana, and prescription medications as high priority substances. CPC concerns focused on the increasing substance use in their communities and the corresponding negative impacts on families, stating a lack of coping skills, positive role models, and hope for the future as concerns for youth. Cultural Tailoring Process Results. Each site formed a CPC that culturally tailored the intervention for their tribal community. This included translating Keetoowah-Cherokee language, cultural practices, and symbolism into the local tribal customs for relevance. The CPCs were essential for incorporating local context and perceived concerns around AI adolescent substance use. These results may be helpful to other tribal communities developing/implementing substance use prevention interventions for AI youth. It is critical that Indigenous cultures and local context be factored into such programs. |
Williamson, Heather J; van Heumen, Lieke; Schwartz, Ariel E Photovoice with Individuals with Intellectual and/or Developmental Disabilities: Lessons Learned from Inclusive Research Efforts Journal Article Collaborations, 3 (1), 2020. @article{Williamson2020, title = {Photovoice with Individuals with Intellectual and/or Developmental Disabilities: Lessons Learned from Inclusive Research Efforts}, author = {Heather J. Williamson and Lieke van Heumen and Ariel E. Schwartz}, url = {http://doi.org/10.33596/coll.45}, doi = {http://doi.org/10.33596/coll.45}, year = {2020}, date = {2020-04-15}, journal = {Collaborations}, volume = {3}, number = {1}, abstract = {Inclusive research is an approach in which individuals with intellectual and/or developmental disabilities (IDD) are included as co-researchers throughout the research processes, and has demonstrated benefits for people with IDD. Because inclusive research is still not common within disability research, it is important for research teams to provide reflections and lessons learned to encourage future inclusive approaches. This paper provides case studies of two research projects completed in collaboration with adults with IDD using Photovoice as an approach that can increase access to the research process for co-researchers with IDD. Drawing upon previously defined inclusive research criteria, we reflect on lessons learned and challenges. Inclusive research requires time, flexibility, shared power, clear communication, and cultural humility. Across both studies, we discuss the importance of clear communication with Institutional Review Boards and collaboration with the extended support networks of individuals with IDD. We reflect on how the accessible nature of Photovoice supports inclusive research teams to combine the strengths of co-researchers with IDD and academically trained researchers, such that the knowledge production process is shifted to co-researchers with IDD.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Inclusive research is an approach in which individuals with intellectual and/or developmental disabilities (IDD) are included as co-researchers throughout the research processes, and has demonstrated benefits for people with IDD. Because inclusive research is still not common within disability research, it is important for research teams to provide reflections and lessons learned to encourage future inclusive approaches. This paper provides case studies of two research projects completed in collaboration with adults with IDD using Photovoice as an approach that can increase access to the research process for co-researchers with IDD. Drawing upon previously defined inclusive research criteria, we reflect on lessons learned and challenges. Inclusive research requires time, flexibility, shared power, clear communication, and cultural humility. Across both studies, we discuss the importance of clear communication with Institutional Review Boards and collaboration with the extended support networks of individuals with IDD. We reflect on how the accessible nature of Photovoice supports inclusive research teams to combine the strengths of co-researchers with IDD and academically trained researchers, such that the knowledge production process is shifted to co-researchers with IDD. |
2017 |
Mayer, Alyssa B; McDermott, Robert J; Bryant, Carol A; Baldwin, Julie A; Kromrey, Jeffrey Sustainability of community-based health promotion coalitions: Putting theory into practice Journal Article Health Behavior and Policy Review, 4 (6), pp. 511-520, 2017. @article{Mayer2017, title = {Sustainability of community-based health promotion coalitions: Putting theory into practice}, author = {Alyssa B Mayer and Robert J McDermott and Carol A Bryant and Julie A Baldwin and Jeffrey Kromrey}, url = {http://ingentaconnect.com/contentone/psp/hbpr/2017/00000004/00000006/art00001;jsessionid=22whnsckp4hwq.x-ic-live-03}, year = {2017}, date = {2017-11-01}, journal = {Health Behavior and Policy Review}, volume = {4}, number = {6}, pages = {511-520}, abstract = {Objective: Despite their rich potential, community coalitions enjoy mixed success in effecting long-term population health improvement. A need exists for strategies that augment and sustain their functional success. We undertook a study to enhance definition of the elements of coalition success and sustainability that, in turn, may foster better achievement in community-based participatory research (CBPR) and concomitant health-related outcomes. Methods: We conducted in-depth, semi-structured interviews (N = 42) with academic researchers and their community coalition partners about the effectiveness of their collaborative endeavors. A grounded theory analysis of interview data informed the identification of domains and thematic elements influencing coalition effectiveness. Results: Seven domains emerged: (1) Characteristics related to coalition structure and processes; (2) Partner characteristics, eg, diversity, patience, flexibility, expertise; (3) Community characteristics, eg, capacity, ownership; (4) Partnership dynamics and synergy; (5) Tangible benefits; (6) Available resources, and; (7) Project characteristics. In all, 70 elements representing these domains influenced coalition effectiveness over time. Conclusions: These results extend our knowledge of factors contributing to coalition effectiveness and the sustainability of academic-community partnerships. Attention to these domains during key operational stages of CBPR initiatives is likely to have broad stakeholder benefits.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Objective: Despite their rich potential, community coalitions enjoy mixed success in effecting long-term population health improvement. A need exists for strategies that augment and sustain their functional success. We undertook a study to enhance definition of the elements of coalition success and sustainability that, in turn, may foster better achievement in community-based participatory research (CBPR) and concomitant health-related outcomes. Methods: We conducted in-depth, semi-structured interviews (N = 42) with academic researchers and their community coalition partners about the effectiveness of their collaborative endeavors. A grounded theory analysis of interview data informed the identification of domains and thematic elements influencing coalition effectiveness. Results: Seven domains emerged: (1) Characteristics related to coalition structure and processes; (2) Partner characteristics, eg, diversity, patience, flexibility, expertise; (3) Community characteristics, eg, capacity, ownership; (4) Partnership dynamics and synergy; (5) Tangible benefits; (6) Available resources, and; (7) Project characteristics. In all, 70 elements representing these domains influenced coalition effectiveness over time. Conclusions: These results extend our knowledge of factors contributing to coalition effectiveness and the sustainability of academic-community partnerships. Attention to these domains during key operational stages of CBPR initiatives is likely to have broad stakeholder benefits. |
Salinas-Miranda, Abraham; King, Lindsey M; Salihu, Hamisu M; Berry, Estrellita; Austin, Deborah; Nash, Susan; Scarborough, Kenneth; Best, Evangeline; Cox, Lillian; King, Georgette; Hepburn, Carrie; Burpee, Conchita; Richardson, Eugene; Ducket, Marlo; Briscoe, Richard; Baldwin, Julie A Exploring the life course perspective in maternal and child health through community-based participatory focus groups: Social risk assessment Journal Article Journal of Health Disparities Research and Practice, 10 (1), pp. 143-166, 2017. @article{Salinas-Miranda2017, title = {Exploring the life course perspective in maternal and child health through community-based participatory focus groups: Social risk assessment}, author = {Abraham Salinas-Miranda and Lindsey M King and Hamisu M Salihu and Estrellita Berry and Deborah Austin and Susan Nash and Kenneth Scarborough and Evangeline Best and Lillian Cox and Georgette King and Carrie Hepburn and Conchita Burpee and Eugene Richardson and Marlo Ducket and Richard Briscoe and Julie A Baldwin}, url = {https://digitalscholarship.unlv.edu/jhdrp/vol10/iss1/9/}, year = {2017}, date = {2017-04-20}, journal = {Journal of Health Disparities Research and Practice}, volume = {10}, number = {1}, pages = {143-166}, abstract = {Little is known about the patterns of risk factors experienced by communities of color and how diverse community contexts shape the health trajectory of women from the early childhood period to the time of their pregnancies. Thus, we conducted a focus group study to identify social risks over the life course that contribute to maternal and child health from the perspective of community members residing in low income urban areas. Ten community-based participatory focus groups were conducted with residents from selected communities in Tampa, Florida, from September to November 2013. We used the life course perspective to illuminate and explain the experiences reported by the interviewees. A total of 78 residents participated in the focus groups. Children and adolescents’ health risks were childhood obesity, lack of physical activity, and low self-esteem. Women’s health risks were low self-esteem, low educational level, low health literacy, inadequate parenting skills, and financial problems. Risks during pregnancy included stress, low self-esteem, inadequate eating patterns, lack of physical activity, healthcare issues, lack of social support, and lack of father involvement during pregnancy. Multiple risk factors contribute to maternal and child health in low income communities in Tampa Bay. The intersection of risk factors in different life periods suggest possible pathways, cumulative, and latent effects, which must be considered in future longitudinal studies and when developing effective maternal and child health programs and policies.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Little is known about the patterns of risk factors experienced by communities of color and how diverse community contexts shape the health trajectory of women from the early childhood period to the time of their pregnancies. Thus, we conducted a focus group study to identify social risks over the life course that contribute to maternal and child health from the perspective of community members residing in low income urban areas. Ten community-based participatory focus groups were conducted with residents from selected communities in Tampa, Florida, from September to November 2013. We used the life course perspective to illuminate and explain the experiences reported by the interviewees. A total of 78 residents participated in the focus groups. Children and adolescents’ health risks were childhood obesity, lack of physical activity, and low self-esteem. Women’s health risks were low self-esteem, low educational level, low health literacy, inadequate parenting skills, and financial problems. Risks during pregnancy included stress, low self-esteem, inadequate eating patterns, lack of physical activity, healthcare issues, lack of social support, and lack of father involvement during pregnancy. Multiple risk factors contribute to maternal and child health in low income communities in Tampa Bay. The intersection of risk factors in different life periods suggest possible pathways, cumulative, and latent effects, which must be considered in future longitudinal studies and when developing effective maternal and child health programs and policies. |
2015 |
Ingram, Maia; Sabo, Samantha; Gomez, Sofia; Piper, Rosalinda; de Zapien, Jill Guernsey; Reinschmidt, Kerstin M; Schachter, Ken A; Carvajal, Scott C Progress in Community Health Partnerships: Research, Education, and Action, 9 (1), pp. 49-56, 2015. @article{Ingram2015, title = {Taking a community-based participatory research approach in the development of methods to measure a community health worker community advocacy intervention}, author = {Maia Ingram and Samantha Sabo and Sofia Gomez and Rosalinda Piper and Jill Guernsey de Zapien and Kerstin M Reinschmidt and Ken A Schachter and Scott C Carvajal}, url = {https://www.ncbi.nlm.nih.gov/pubmed/25981424}, doi = {10.1353/cpr.2015.0001}, year = {2015}, date = {2015-04-01}, journal = {Progress in Community Health Partnerships: Research, Education, and Action}, volume = {9}, number = {1}, pages = {49-56}, abstract = {BACKGROUND: Public health advocacy is by necessity responsive to shifting sociopolitical climates, and thus a challenge of advocacy research is that the intervention must by definition be adaptive. Moving beyond the classification of advocacy efforts to measurable indicators and outcomes of policy, therefore, requires a dynamic research approach. OBJECTIVES: The purposes of this article are to (1) describe use of the CBPR approach in the development and measurement of a community health worker (CHW) intervention designed to engage community members in public health advocacy and (2) provide a model for application of this approach in advocacy interventions addressing community-level systems and environmental change. METHODS: The Kingdon three streams model of policy change provided a theoretical framework for the intervention. Research and community partners collaboratively identified and documented intervention data. We describe five research methods used to monitor and measure CHW advocacy activities that both emerged from and influenced intervention activities. DISCUSSION: Encounter forms provided a longitudinal perspective of how CHWs engaged in advocacy activities in the three streams. Strategy maps defined desired advocacy outcomes and health benefits. Technical assistance notes identified and documented intermediate outcomes. Focus group and interview data reflected CHW efforts to engage community members in advocacy and the development of community leaders. APPLICATION OF LESSONS LEARNED: We provide a model for application of key principles of CPBR that are vital to effectively capturing the overarching and nuanced aspects of public health advocacy work in dynamic political and organizational environments.}, keywords = {}, pubstate = {published}, tppubtype = {article} } BACKGROUND: Public health advocacy is by necessity responsive to shifting sociopolitical climates, and thus a challenge of advocacy research is that the intervention must by definition be adaptive. Moving beyond the classification of advocacy efforts to measurable indicators and outcomes of policy, therefore, requires a dynamic research approach. OBJECTIVES: The purposes of this article are to (1) describe use of the CBPR approach in the development and measurement of a community health worker (CHW) intervention designed to engage community members in public health advocacy and (2) provide a model for application of this approach in advocacy interventions addressing community-level systems and environmental change. METHODS: The Kingdon three streams model of policy change provided a theoretical framework for the intervention. Research and community partners collaboratively identified and documented intervention data. We describe five research methods used to monitor and measure CHW advocacy activities that both emerged from and influenced intervention activities. DISCUSSION: Encounter forms provided a longitudinal perspective of how CHWs engaged in advocacy activities in the three streams. Strategy maps defined desired advocacy outcomes and health benefits. Technical assistance notes identified and documented intermediate outcomes. Focus group and interview data reflected CHW efforts to engage community members in advocacy and the development of community leaders. APPLICATION OF LESSONS LEARNED: We provide a model for application of key principles of CPBR that are vital to effectively capturing the overarching and nuanced aspects of public health advocacy work in dynamic political and organizational environments. |
2014 |
Ingram, Maia; Schachter, Ken A; Sabo, Samantha; Reinschmidt, Kerstin M; Gomez, Sofia; Zapien, Jill Guernsey De; Carvajal, Scott C A community health worker intervention to address the social determinants of health through policy change Journal Article The Journal of primary Prevention, 35 (2), pp. 119-123, 2014. @article{Ingram2014, title = {A community health worker intervention to address the social determinants of health through policy change}, author = {Maia Ingram and Ken A Schachter and Samantha Sabo and Kerstin M Reinschmidt and Sofia Gomez and Jill Guernsey De Zapien and Scott C Carvajal}, url = {https://www.ncbi.nlm.nih.gov/pubmed/24363179}, doi = {10.1007/s10935-013-0335-y}, year = {2014}, date = {2014-04-01}, journal = {The Journal of primary Prevention}, volume = {35}, number = {2}, pages = {119-123}, abstract = {Public policy that seeks to achieve sustainable improvements in the social determinants of health, such as income, education, housing, food security and neighborhood conditions, can create positive and sustainable health effects. This paper describes preliminary results of Acción para la Salud, a public health intervention in which Community health workers (CHWs) from five health agencies engaged their community in the process of making positive systems and environmental changes. Academic-community partners trained Acción CHWs in community advocacy and provided ongoing technical assistance in developing strategic advocacy plans. The CHWs documented community advocacy activities through encounter forms in which they identified problems, formulated solutions, and described systems and policy change efforts. Strategy maps described the steps of the advocacy plans. Findings demonstrate that CHWs worked to initiate discussions about underlying social determinants and environment-related factors that impact health, and identified solutions to improve neighborhood conditions, create community opportunities, and increase access to services.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Public policy that seeks to achieve sustainable improvements in the social determinants of health, such as income, education, housing, food security and neighborhood conditions, can create positive and sustainable health effects. This paper describes preliminary results of Acción para la Salud, a public health intervention in which Community health workers (CHWs) from five health agencies engaged their community in the process of making positive systems and environmental changes. Academic-community partners trained Acción CHWs in community advocacy and provided ongoing technical assistance in developing strategic advocacy plans. The CHWs documented community advocacy activities through encounter forms in which they identified problems, formulated solutions, and described systems and policy change efforts. Strategy maps described the steps of the advocacy plans. Findings demonstrate that CHWs worked to initiate discussions about underlying social determinants and environment-related factors that impact health, and identified solutions to improve neighborhood conditions, create community opportunities, and increase access to services. |
2013 |
Gwede, Clement K; Ashley, Atalie A; McGinnis, Kara; Montiel-Ishino, Alejandro F; Standifer, Maisha; Baldwin, Julie A; Williams, Coni; Sneed, Kevin B; Wathington, Deanna; Dash-Pitts, Lolita; Green, Lee B Designing a community-based lay health advisor training curriculum to address cancer health disparities Journal Article Health Promotion Practice, 14 (3), pp. 415-424, 2013. @article{Gwede2013, title = {Designing a community-based lay health advisor training curriculum to address cancer health disparities}, author = {Clement K Gwede and Atalie A Ashley and Kara McGinnis and Alejandro F Montiel-Ishino and Maisha Standifer and Julie A Baldwin and Coni Williams and Kevin B Sneed and Deanna Wathington and Lolita Dash-Pitts and Lee B Green}, url = {https://www.ncbi.nlm.nih.gov/pubmed/22982709}, doi = {10.1177/1524839912458675}, year = {2013}, date = {2013-05-01}, journal = {Health Promotion Practice}, volume = {14}, number = {3}, pages = {415-424}, abstract = {INTRODUCTION: Racial and ethnic minorities have disproportionately higher cancer incidence and mortality than their White counterparts. In response to this inequity in cancer prevention and care, community-based lay health advisors (LHAs) may be suited to deliver effective, culturally relevant, quality cancer education, prevention/screening, and early detection services for underserved populations. APPROACH AND STRATEGIES: Consistent with key tenets of community-based participatory research (CBPR), this project engaged community partners to develop and implement a unique LHA training curriculum to address cancer health disparities among medically underserved communities in a tricounty area. Seven phases of curriculum development went into designing a final seven-module LHA curriculum. In keeping with principles of CBPR and community engagement, academic-community partners and LHAs themselves were involved at all phases to ensure the needs of academic and community partners were mutually addressed in development and implementation of the LHA program. DISCUSSION AND CONCLUSIONS: Community-based LHA programs for outreach, education, and promotion of cancer screening and early detection, are ideal for addressing cancer health disparities in access and quality care. When community-based LHAs are appropriately recruited, trained, and located in communities, they provide unique opportunities to link, bridge, and facilitate quality cancer education, services, and research.}, keywords = {}, pubstate = {published}, tppubtype = {article} } INTRODUCTION: Racial and ethnic minorities have disproportionately higher cancer incidence and mortality than their White counterparts. In response to this inequity in cancer prevention and care, community-based lay health advisors (LHAs) may be suited to deliver effective, culturally relevant, quality cancer education, prevention/screening, and early detection services for underserved populations. APPROACH AND STRATEGIES: Consistent with key tenets of community-based participatory research (CBPR), this project engaged community partners to develop and implement a unique LHA training curriculum to address cancer health disparities among medically underserved communities in a tricounty area. Seven phases of curriculum development went into designing a final seven-module LHA curriculum. In keeping with principles of CBPR and community engagement, academic-community partners and LHAs themselves were involved at all phases to ensure the needs of academic and community partners were mutually addressed in development and implementation of the LHA program. DISCUSSION AND CONCLUSIONS: Community-based LHA programs for outreach, education, and promotion of cancer screening and early detection, are ideal for addressing cancer health disparities in access and quality care. When community-based LHAs are appropriately recruited, trained, and located in communities, they provide unique opportunities to link, bridge, and facilitate quality cancer education, services, and research. |
2011 |
Teufel-Shone, Nicolette Community-based participatory research and the academic system of rewards Journal Article Virtual Mentor- American Medical Association Journal of Ethics, 13 (2), pp. 118-123, 2011. @article{Teufel-Shone2011, title = {Community-based participatory research and the academic system of rewards}, author = {Nicolette Teufel-Shone}, url = {http://journalofethics.ama-assn.org/2011/02/pfor1-1102.html}, year = {2011}, date = {2011-02-01}, journal = {Virtual Mentor- American Medical Association Journal of Ethics}, volume = {13}, number = {2}, pages = {118-123}, abstract = {The National Institute of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Robert Wood Johnson Foundation (RWJF), and other primary funders of health-related research have identified community-based participatory research (CBPR) as essential to deepening our scientific knowledge of health promotion and disease prevention and reducing racial and ethnic health disparities [2-5]. The Institute of Medicine (IOM) has named CBPR as one of eight competencies for all health professional students [6]. Yet, as an expanding cohort of junior university-based CBP researchers proceed through the academic system—specifically through the promotion and tenure process—many continue to be reviewed using the standards developed for non-CBP researchers. As stated in Calleson et al.’s seminal article recommending change, “If we want faculty to be involved in communities but reward them for other activities, we are our own worst enemies” [7].}, keywords = {}, pubstate = {published}, tppubtype = {article} } The National Institute of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Robert Wood Johnson Foundation (RWJF), and other primary funders of health-related research have identified community-based participatory research (CBPR) as essential to deepening our scientific knowledge of health promotion and disease prevention and reducing racial and ethnic health disparities [2-5]. The Institute of Medicine (IOM) has named CBPR as one of eight competencies for all health professional students [6]. Yet, as an expanding cohort of junior university-based CBP researchers proceed through the academic system—specifically through the promotion and tenure process—many continue to be reviewed using the standards developed for non-CBP researchers. As stated in Calleson et al.’s seminal article recommending change, “If we want faculty to be involved in communities but reward them for other activities, we are our own worst enemies” [7]. |