Lifting the voices of Spanish-speaking Kansans: a community-engaged approach to health equity

Multilingua ◽  
2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Rachel Showstack ◽  
Silvia Duque ◽  
Nikki Keene Woods ◽  
Ana López ◽  
Amy Chesser

Abstract An important component of social justice research is centering the voices of those individuals whose lives the research is intended to improve, not as subjects from whom researchers collect data but as active participants in a process of understanding and addressing issues of concern to the community. This ideal of community engagement slows the pace of dissemination of traditional social science or sociolinguistic scholarship but also allows scholars and community members to collaborate to identify and implement meaningful solutions to community problems. We describe a process of engagement of Spanish-speaking patients, interpreters, and healthcare providers in developing a health equity agenda for Spanish speakers in Kansas, grounded in a community-based participatory approach called Patient-Centered Outcomes Research. Stakeholders were engaged through sharing and amplifying their testimonios, stories that tied personal experiences of encountering language barriers in healthcare with calls to action, and they contributed to decisions about what to do with the stories and how to respond to the problems they identified. The result of our engagement process is the formation of a community-based team that has amplified the voices of Spanish-speaking patients and families to reach a range of audiences and responded to a number of evolving community needs. We provide recommendations for language researchers interested in pursuing community-engaged work and explore the possibilities for aligning such work with the expectations of academic institutions.

BMJ Leader ◽  
2021 ◽  
pp. leader-2020-000380
Author(s):  
Onyinyechi F Eke ◽  
Alister Martin ◽  
Hazar Khidir ◽  
Onyeka Otugo ◽  
Andrew Marshall ◽  
...  

In response to an imminent surge in COVID-19 cases, the state of Massachusetts (MA) released its Crisis Standards of Care (CSC) guidelines in April 2020. A small group of Boston healthcare providers, community members, lawyers, ethicists and disability advocates brought to bear our collective strengths to forge a formidable coalition now known as the Massachusetts Coalition for Health Equity, to champion the rights of marginalised groups that would be adversely affected by the implementation of the original MA CSC guidelines. In this coalition, members of marginalised communities were adequately represented, led discussions on the implications of implementing inequitable elements of the CSC guidelines and actively involved in creating an alternative framework. In this article, we discuss the process of building a coalition whose concerted advocacy efforts led to the revision of the MA CSC guidelines.


Stroke ◽  
2020 ◽  
Vol 51 (Suppl_1) ◽  
Author(s):  
Pamela Cheng ◽  
Barbara Vickrey ◽  
Frances Barry ◽  
Monica Ayala-Rivera ◽  
Eric Cheng ◽  
...  

Background: Approximately 25 million people in the US are Limited English Proficient (LEP). LEP individuals are more likely to feel dissatisfied with the quality of healthcare when compared to the English proficient, but little is known about LEP stroke survivors. Objective: To evaluate differences in stroke literacy, self-efficacy, and perceptions of healthcare delivery in English and Spanish-speaking individuals enrolled in the Secondary stroke prevention by Uniting Community and Chronic care model teams Early to End Disparities (SUCCEED) trial. Methods: SUCCEED participants were given the option of receiving the intervention in English or Spanish. Baseline differences in stroke literacy (Schneider et al), self-efficacy (General Self-Efficacy Scale), and perceptions of care (Patient Assessment of Chronic Illness Care and Consumer Assessment of Healthcare Providers and Systems) were compared using T-test, Chi Square, and Fisher Exact in individuals who chose Spanish vs. English. Results: Of 487 participants, 207 preferred English and 280 chose Spanish. Despite feeling more worried about having a stroke (77 % vs. 67%), and feeling at risk of having a stroke (63% vs. 45%), Spanish-speakers were less likely to identify 3 stroke risk factors (19% vs. 33%, all p<0.05). Half of Spanish-speakers had difficulty understanding what was being told to them (50% vs. 30%), and less than half felt confident filling out medical forms (40% vs. 70%, both p<0.05). Spanish-speakers responded favorably about the ease of hospital admission or accessing medical care (80% vs. 55% and 72% vs. 53%), but responded negatively about providers spending enough time with them or explaining things in a way that was easy to understand (56% vs. 24% and 52% vs. 28%, all p<0.05). Spanish-speakers were more likely to feel that providers did not listen or respect what they had to say (52% vs. 22% and 44% vs. 17%, both p<0.05). Conclusion: Among stroke survivors, Spanish-speakers were more likely to have low stroke literacy, low self-efficacy, and a negative perception of healthcare delivery despite feeling that healthcare was accessible. Recognizing language barriers as a contributor to healthcare disparities, and tailoring interventions to address these barriers are crucial.


2017 ◽  
Vol 1 (S1) ◽  
pp. 80-80
Author(s):  
Clara Pelfrey ◽  
Katrice Cain ◽  
Mary Ellen Lawless ◽  
Earl Pike ◽  
Ashwini Sehgal

OBJECTIVES/SPECIFIC AIMS: This study describes the design, operation, and evaluation of a community-based research (CBR) consult service within the setting of a Clinical and Translational Science Award (CTSA) institution. To our knowledge, there are no published evaluations of a CBR consult service at a CTSA hub. METHODS/STUDY POPULATION: A CBR consult service was created to support faculty, healthcare providers/research coordinators, trainees, community-based organizations, and community members. A framework was developed to assess the stages of client engagement and to foster clear articulation of client needs and challenges. A developmental evaluation system was integrated with the framework to track progress, store documents, continuously improve the consult service, and assess research outcomes. RESULTS/ANTICIPATED RESULTS: This framework provides information on client numbers, types, services used, and successful outreach methods. Tracking progress reveals reasons that prevent clients from completing projects and facilitates learning outcomes relevant to clients and funding agencies. Clients benefit from the expert knowledge, community connections, and project guidance provided by the consult service team, increasing the likelihood of study completion and achieving research outcomes. DISCUSSION/SIGNIFICANCE OF IMPACT: Our evaluation suggests that clients benefit by (1) gaining the collective knowledge of the experts comprising the team, (2) learning the process of doing CBR, including the required steps to reach completion, and (3) gaining a project management mentality promoting translational research outcomes. This study offers a framework by which CTSA institutions can expand their capacity to conduct and evaluate CBR while addressing challenges that inhibit community engagement.


2014 ◽  
Vol 2014 ◽  
pp. 1-13 ◽  
Author(s):  
Cindy Tofthagen ◽  
Barbara Halpenny ◽  
Maribel Melendez ◽  
Laura Gonzalez ◽  
Veronica Sanchez Varela ◽  
...  

Spanish speakers in the United States encounter numerous communication barriers during cancer treatment. Communication-focused interventions may help Spanish speakers communicate better with healthcare providers and manage symptoms and quality of life issues (SQOL). For this study, we developed a Spanish version of the electronic self-report assessment for cancer (ESRA-C), a web-based program that helps people with cancer report, track, and manage cancer-related SQOL. Four methods were used to evaluate the Spanish version. Focus groups and cognitive interviews were conducted with 51 Spanish-speaking individuals to elicit feedback. Readability was assessed using the Fry readability formula. The cultural sensitivity assessment tool was applied by three bilingual, bicultural reviewers. Revisions were made to personalize the introduction using a patient story and photos and to simplify language. Focus group participants endorsed changes to the program in a second round of focus groups. Cultural sensitivity of the program was scored unacceptable (x¯=3.0) for audiovisual material and acceptable (x¯=3.0) for written material. Fry reading levels ranged from 4th to 10th grade. Findings from this study provide several next steps to refine ESRA-C for Spanish speakers with cancer.


2021 ◽  
Author(s):  
Nazia Sharfuddin ◽  
Pamela Mathura ◽  
Emily Ling ◽  
Ellen Bruseker ◽  
Areej Rajeh ◽  
...  

Abstract Background: Medical Interpretation Services (MIS) is the gold-standard that should be used during clinical assessments with patients who have limited English proficiency (LEP) or have hearing loss. The COVID-19 pandemic has highlighted the urgent need for clear, concise medical communication between patients and clinicians to prevent the spread of COVID-19 and ensure public safety. Cost of MIS is covered by the provincial health authority in Alberta; however, it is not consistently utilized across the province.Aim: To implement digital MIS in the Emergency Department (ED) of one urban teaching hospital, improving accuracy of clinical assessment and to provide patient-centered communication. Methods: Applying quality improvement methodology, an intervention comprised of digital MIS technology and education was trialed for 6 months. To assess intervention effect, the number of MIS minutes and calls were measured monthly and a questionnaire was developed and administered to determine ED healthcare providers’ awareness, technology accessibility and perception of MIS integration into the clinical workflow. Results: Digital MIS was utilized consistently in the ED from the beginning of the COVID-19 pandemic (March 2020) and over the subsequent six months. The cost avoidance due to digital MIS usage was estimated to be $19,612.16. ED healthcare providers indicated that digital MIS helped smooth communication with patients and reduced the time it took to gather and provide accurate information. Conclusion: Providing digital MIS access, education and training is a means to advance health equity, by improving accuracy of clinical assessment and patient-centered care in the ED.


2021 ◽  

Community-based substance use prevention involves changing the community context to reduce the prevalence of substance use among community members. The specific actions taken to prevent substance use will vary depending on the initiative but should include activities that target community-level factors that influence substance use, as well as the implementation of specific, evidence-based policies and programs that reach as many individuals as possible in the community. Many community-based prevention efforts are led by coalitions of community members. Ideally, these coalitions will include representation from diverse groups and organizations and comprise all stakeholders concerned about substance use. The use of broad-based coalitions helps ensure that prevention efforts are community-specific, responsive to community needs, and culturally relevant. Participation by community stakeholders and organizations also increases the likelihood that prevention programs are implemented in multiple contexts, reach large numbers of individuals in order to achieve community-level reductions in substance use, and can be sustained over time. Coalitions can also work to change local policies, regulations, and/or ordinances to reduce all community members’ access to substances and opportunities to use them. Community-based prevention can be very challenging, especially in under-resourced communities. In any community, it can be difficult to recruit community members to volunteer to participate in such initiatives and to sustain their interest over time. In addition, maintaining active coalitions, enacting policy changes, and implementing prevention programs requires significant human and financial resources. Communities are also likely to need technical support and ongoing consultation from researchers to help them plan, implement, and evaluate the success of their efforts. Despite these difficulties, some community-based prevention efforts have been demonstrated as effective in reducing substance use/abuse. Although these interventions vary in their complexity and mechanisms for achieving change, common features of successful community-based approaches include the following: (1) clear definition of the specific problem(s) to be prevented; (2) involvement of community members, often through broad-based coalitions; (3) assessment of community-specific needs and resources; (4) implementation of prevention programs, practices, and policies to address these needs; and (5) monitoring of these activities over time to ensure their effectiveness and sustainability. By following these steps and using interventions that have prior evidence of effectiveness from well-conducted research studies, communities should be able to achieve significant reduction in community rates of substance use.


Author(s):  
George Nicholas

The values that descendant communities place on heritage objects and places have historically been eclipsed by science-oriented approaches to the archaeological record. However, local knowledge is vital to making decisions about the protection or use of tangible or intangible heritage, and knowledge derived from it. Learning to listen must thus be a part of the archaeologist’s tool kit. In this chapter, I describe the value of what can be learned from Indigenous community members (Community-based participatory research), as well as how ethnoarchaeological studies contribute to a fuller understanding of heritage, directly benefit community needs and interests, and make substantial contributions to archaeology and heritage preservation. I focus on community-directed projects funded by the Intellectual Property Issues in Cultural Heritage (IPinCH) project. These initiatives directly benefit community needs and interests, while also making substantial contributions to archaeology and heritage preservation.


2021 ◽  
Vol 8 ◽  
Author(s):  
Nelsensius Klau Fauk ◽  
Paul Russell Ward ◽  
Karen Hawke ◽  
Lillian Mwanri

Stigma and discrimination are major challenges facing People Living with HIV/AIDS (PLWHA) globally due to their HIV status. As part of a larger qualitative study in Yogyakarta and Belu, Indonesia, using in-depth interviews with 92 PLWHA (52 women, 40 men) and 20 healthcare providers, this paper describes perspectives and personal experiences of the 20 healthcare providers, relating to HIV stigma and discrimination toward PLWHA in both study settings. The healthcare providers were recruited from healthcare facilities providing HIV-related healthcare services, using a snowball sampling technique. A qualitative framework analysis was used to guide data analysis. Health stigma and discrimination framework guided the conceptualisation and discussion of the findings. The findings presented the views and perspectives of healthcare providers that HIV stigma and discrimination toward PLWHA still occurred within families, communities and healthcare settings. These were reflected in negative labelling, separation of personal belongings, avoidance, denial of treatment and rejection of PLWHA by healthcare providers, family and community members. Some healthcare providers reported that they had personally stigmatised and discriminated against PLWHA. A lack of knowledge about HIV, fear of contracting HIV, personal values, religious thoughts and sociocultural values and norms, were reported as drivers or facilitators behind this HIV-related stigma and discrimination. The findings indicate the importance of continued HIV/AIDS education for families, community members and healthcare providers, to raise awareness and to ensure that healthy and professional support systems are in place for PLWHA. The findings indicate the need to enhance improvement within the healthcare or HIV care system to adequately address the needs of PLWHA, which may facilitate their early initiation of HIV treatment and better treatment adherence and retention to increase Cluster of Differentiation 4 (CD4) count and suppress viral load. Future studies are also needed to explore the role that government and non-government institutions can play in improving health service delivery for people newly diagnosed with HIV and those living with HIV/AIDS.


2018 ◽  
Vol 12 (6) ◽  
pp. 627-644 ◽  
Author(s):  
Dalia Magaña ◽  
Teenie Matlock

Our study seeks a better understanding of how Spanish-speaking cancer patients communicate about their personal experiences with cancer. We examine the use of metaphor in narratives contributed to an online forum for Spanish speakers afflicted with various types of cancer. Specifically, we identify, quantify and discuss three categories of metaphors: violence, journey and other. Our study expands prior work on cancer communication by examining a language other than English, by focusing on how cancer victims communicate among themselves, and by examining how cancer narratives discuss concerns about personal experiences with this disease. Research thus far has focused on English. The work also expands on what is known about how people use the metaphor ‘in the wild’.


BMJ Open ◽  
2018 ◽  
Vol 8 (10) ◽  
pp. e022140
Author(s):  
Kyu Kyu Than ◽  
Victoria Oliver ◽  
Yasmin Mohamed ◽  
Thazin La ◽  
Pete Lambert ◽  
...  

ObjectiveThis study assessed the potential operational feasibility and acceptability of a heat-stable, inhaled oxytocin (IOT) product for community-based prevention of postpartum haemorrhage in Myanmar.MethodsA qualitative inquiry was conducted between June 2015 and February 2016 through focus group discussions and in-depth interviews. Research was conducted in South Dagon township (urban setting) and in Ngape and Thanlyin townships (rural settings) in Myanmar. Eleven focus group discussions and 16 in-depth interviews were conducted with mothers, healthcare providers and other key informants. All audio recordings were transcribed verbatim in Myanmar language and were translated into English. Thematic content analysis was done using NVivo software.ResultsFuture introduction of an IOT product for community-based services was found to be acceptable among mothers and healthcare providers and would be feasible for use by lower cadres of healthcare providers, even in remote settings. Responses from healthcare providers and community members highlighted that midwives and volunteer auxiliary midwives would be key advocates for promoting community acceptance of the product. Healthcare providers perceived the ease of use and lack of dependence on cold storage as the main enablers for IOT compared with the current gold standard oxytocin injection. A single-use disposable device with clear pictorial instructions and a price that would be affordable by the poorest communities was suggested. Appropriate training was also said to be essential for the future induction of the product into community settings.ConclusionIn Myanmar, where home births are common, access to cold storage and skilled personnel who are able to deliver injectable oxytocin is limited. Among community members and healthcare providers, IOT was perceived to be an acceptable and feasible intervention for use by lower cadres of healthcare workers, and thus may be an alternative solution for the prevention of postpartum haemorrhage in community-based settings in the future.


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