Evaluating the Linguistic Appropriateness and Cultural Sensitivity of a Self-Report System for Spanish-Speaking Patients with Cancer

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.

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Abstract 184: Unraveling Disparities: Stroke Literacy, Self-Efficacy, and Perceptions of Care Among Spanish-Speaking Stroke Survivors

Stroke ◽

10.1161/str.51.suppl_1.184 ◽

2020 ◽

Vol 51 (Suppl_1) ◽

Author(s):

Pamela Cheng ◽

Barbara Vickrey ◽

Frances Barry ◽

Monica Ayala-Rivera ◽

Eric Cheng ◽

...

Keyword(s):

Self Efficacy ◽

Healthcare Delivery ◽

Healthcare Providers ◽

Quality Of Healthcare ◽

Care Patient ◽

Spanish Speakers ◽

Stroke Survivors ◽

Chi Square ◽

Spanish Speaking ◽

Perceptions Of Care

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.

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Neurocognitive Impairment in Spanish-Speaking Latinos Living with Human Immunodeficiency Virus in the United States: Validation of Neuropsychological Tests Norms

Archives of Clinical Neuropsychology ◽

10.1093/arclin/acz029.26 ◽

2019 ◽

Vol 34 (7) ◽

pp. 1259-1259

Author(s):

L Kamalyan ◽

M A Hussain ◽

M M Diaz ◽

A Umlauf ◽

D R Franklin ◽

...

Keyword(s):

Neuropsychological Test ◽

The United States ◽

Neurocognitive Impairment ◽

Spanish Speakers ◽

Border Region ◽

Spanish Speaking ◽

Speed Of Information Processing ◽

Increased Risk ◽

The Us ◽

Mexico Border

Abstract Objective Latinos in the US are at increased risk for HIV-associated neurocognitive impairment (NCI). Yet, most studies in this group have included English-speakers only. We investigated the rate and pattern of HIV-associated NCI in Spanish-speaking Latinos from the US-Mexico border region by utilizing newly developed norms for this group, and compared it to previously published norms for English-speaking non-Latino Whites and Blacks/African Americans. Participants and Method Participants included 153 HIV+ Spanish-speaking Latinos (Age: M = 38.2, SD = 9.7; Education: M = 10.9, SD = 3.6; 27% female; 56% AIDS) living in the greater San Diego area. Participants completed comprehensive neuropsychological, neuromedical and psychiatric assessments in Spanish. The neuropsychological test battery employed in this study - and used extensively in prior studies of HIV- assesses seven ability domains. Raw test scores were converted to demographically-adjusted T-scores using regional norms for Spanish-speakers, and for non-Latino Whites and Blacks. NCI was defined per established criteria. Results Rate of global NCI was 39% using norms for Spanish-speaking Latinos, compared to 64% with White norms and 18% with Black norms. Using norms for Spanish speakers, domain specific NCI among those impaired was highest in executive function (68%), speed of information processing (65%), learning (51%), and working memory (50%). The pattern of HIV associated NCI varied when norms developed for non-Latino Whites and Blacks were used. Conclusions HIV+ Spanish speakers showed similar rates of global NCI to those in other HIV+ populations, when norms developed for this group were used. In contrast, use of non-Latino White and Black norms resulted in misclassification of impairment. The pattern of NCI differed based on the norms used. Present findings highlight the importance of utilizing norms developed for Spanish-speakers in the US in order to obtain more precise and valid depictions of cognition in this population.

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Evaluating the Efficacy of a Cognitive Skills Training Program for Spanish-Speaking Adults with Subjective Cognitive Complaints

Archives of Clinical Neuropsychology ◽

10.1093/arclin/acz029.37 ◽

2019 ◽

Vol 34 (7) ◽

pp. 1270-1270

Author(s):

Y Patino ◽

P Sinclair ◽

J Osher ◽

K Torres

Keyword(s):

Training Program ◽

Cognitive Performance ◽

Cognitive Training ◽

Cultural Sensitivity ◽

Cognitive Skills ◽

Skills Training ◽

Spanish Version ◽

Cognitive Complaints ◽

Spanish Speaking ◽

Subjective Cognitive Complaints

Abstract Objective The purpose of this pilot study was to examine the efficacy of a five-week Spanish cognitive skills training program on 18 participants with subjective cognitive complaints. Participants and Method Eighteen Spanish-speaking participants completed a series of cognitive and emotional measures pre- and post-training, including objective measures of cognitive functioning (Montreal Cognitive Assessment, Spanish-version; MoCA), self-reported mood measures (Beck Depression Inventory, BDI; Beck Anxiety Inventory, BAI-Spanish version), and subjective cognitive complaints questionnaire (Subjective Cognitive Decline Questionnaire, Spanish version). Drawing from existing literature on effective interventions for subjective cognitive impairment (Reijnders et al., 2015), this research focused on delivering a five-week intervention program in Spanish, which included psychoeducation on cognition, cognitive strategy training, and applied practice of mindfulness techniques. Furthermore, this intervention incorporated Personalismo and indirect communication, which was applied by engaging with participants in a warm and culturally appropriate manner (Jiménez et al., 2014). Results Participants demonstrated significant improvement in overall MoCA scores. Improvements in subjective cognitive performance, as well as decreases in depression and anxiety (as indicated by the BDI and BAI, respectively) were noted. Results also showed that changes in mood, anxiety, and subjective cognitive performance were not predictive of improvements in MoCA performance, lending support to the hypothesis that skills learned in the program contributed to improved cognitive performance. Conclusions Overall, these results demonstrate that linguistically and culturally tailored psychoeducation regarding cognition, cognitive skills training, and mindfulness, can positively impact subjective and objective cognitive performance, as well as psychological wellbeing among Spanish-speaking adults. References Jiménez, A.L., Alegría, M., Camino-Gaztambide, R.F., & Zayas I, L.V. (2014) Cultural sensitivity: What should we understand about Latinos? In R. Parekh (ed.) The Massachusetts General Hospital Textbook on Diversity and Cultural Sensitivity in Mental Health (pp.61-70). New York, NY: Springer. Rebok, G. W., Ball, K., Guey, L. T., Jones, R. N., Kim, H. Y., King, J. W., … ACTIVE Study Group (2014). Ten-year effects of the advanced cognitive training for independent and vital elderly cognitive training trial on cognition and everyday functioning in older adults. Journal of the American Geriatrics Society, 62(1), 16–24. doi:10.1111/jgs.12607.

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Correlations among GPA and Scores on the Spanish Version of WISC—R and the Woodcock-Johnson Achievement Subtests for 10- to 12-Year-Old Puerto Rican Children

Psychological Reports ◽

10.2466/pr0.1990.66.2.563 ◽

1990 ◽

Vol 66 (2) ◽

pp. 563-566 ◽

Cited By ~ 2

Author(s):

Victor L. Rodriguez ◽

Joseph O. Prewitt Diaz

Keyword(s):

United States ◽

Puerto Rican ◽

The United States ◽

Achievement Test ◽

Spanish Language ◽

Spanish Version ◽

Moderate Correlation ◽

Spanish Speaking ◽

Pearson Correlations ◽

Woodcock Johnson

The purpose of this study was to explore the correlations among GPA, the Spanish version of the WISC—R, and the Woodcock Johnson Achievement subtests for a group of Puerto Rican children. The tests were administered to a sample of 32 children between the ages of 10 to 12 yr. in Grade 4. Pearson correlations between the Verbal, Performance, and Full Scale scaled scores in the WISC—R (Spanish Edition) ranged between .37 to .83. Correlations between subtests of the Woodcock-Johnson Achievement Test ranged from .26 to .70. The moderate correlation between the Total scaled scores on the Woodcock-Johnson and the scaled scores of the Performance, Verbal, and Full Scales of the Spanish WISC—R is indicative of the value of these Spanish-language instruments in diagnosing the intellectual and academic performance of Spanish-speaking populations in the United States.

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Adaptation of a mobile health platform to the needs of cystic fibrosis patients, caregivers, and clinicians in the United States (Preprint)

10.2196/preprints.19413 ◽

2020 ◽

Author(s):

Sarah B. Rutland ◽

Rikard Palmer Bergquist ◽

Andreas Hager ◽

Robin Geurs ◽

Cathy Mims ◽

...

Keyword(s):

United States ◽

Cystic Fibrosis ◽

Focus Groups ◽

Mobile Health ◽

Healthcare Providers ◽

The United States ◽

Standards Of Care ◽

Healthcare Team ◽

Daily Care ◽

Clinic Visits

BACKGROUND Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision-making. OBJECTIVE This study adapted a mobile health (mHealth) application originally developed in Sweden to the needs of people with CF, their caregivers, and healthcare providers in the United States, and tested it as a platform for sharing patient-generated health data (PGHD) with the CF healthcare team. METHODS Focus groups with CF healthcare providers, adolescents with CF, and caregivers of children and adolescents with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of PGHD to a secure REDCap database was tested. Protocols for data management and clinical follow-up were also developed. RESULTS Five focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the healthcare team; language and presentation; sharing and privacy; as well as settings and accounts. Overall, healthcare providers recommended changes to align the mHealth platform with U.S. standards of care, people with CF and their caregivers requested to track more disease symptoms and clinical outcomes, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta-testers of the modified platform reported issues related to translatability to U.S. environment and various bugs. CONCLUSIONS This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered in order to meet both end-user needs and evidence-based practice recommendations. CLINICALTRIAL NCT03910881

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COVID-19 Communication to English- and Spanish-Speaking Cancer Patients: A Website Analysis of Seven Healthcare Systems in North Texas (Preprint)

10.2196/preprints.30492 ◽

2021 ◽

Author(s):

Robin T Higashi ◽

John W Sweetenham ◽

Aimee D Israel ◽

Jasmin A Tiro

Keyword(s):

Cancer Patients ◽

Information Needs ◽

Assessment Tool ◽

Descriptive Analysis ◽

Spanish Speakers ◽

Web Pages ◽

Online Information ◽

Visual Aids ◽

North Texas ◽

Spanish Speaking

BACKGROUND The COVID-19 pandemic created an urgent need to rapidly disseminate health information, especially to those with cancer because they face higher morbidity and mortality rates. At the same time, the disproportionate impact of the pandemic on Latinx populations underscores the need for information to reach Spanish-speakers. However, the equity of information about COVID-19 to Spanish-speaking cancer patients communicated through institutions’ online media is unknown. OBJECTIVE We conducted a multi-modal, mixed method document review study to evaluate the equity of online information about COVID-19 and cancer available to English and Spanish speaking populations from seven healthcare institutions in North Texas, where one in five adults is Spanish-speaking. Our focus is less on the “digital divide”, which conveys disparities in access to computers and the Internet based on the race/ethnicity, education, and income of at-risk populations; rather, our study asks: to what extent is online content useful and culturally appropriate in meeting Spanish-speakers’ information needs? METHODS We reviewed 50 websites (33 English, 17 Spanish) over a period of one week in mid-May 2020. We sampled seven institutions’ main oncology and COVID web pages, as well as both internal (institutional web pages) and external (non-institutional web pages) linked content. We conducted several analyses for each sampled page: (a) thematic content analysis, (b) literacy level analysis using Readability Studio software, (c) coding using the Patient Education and Materials Assessment Tool (PEMAT), and (d) descriptive analysis of video and diversity content. RESULTS The themes most frequently addressed on English and Spanish websites differed somewhat. While “resources/FAQs” were frequently cited themes on both websites, English websites more frequently addressed “news/updates” and “cancer+COVID”, whereas Spanish websites addressed “protection” and “COVID data”. Spanish websites were on average lower literacy (11th grade) than English (13th grade), although still far above recommended guidelines of <9th grade. The overall average accessibility score using the PEMAT analysis was the same for English (n=33 pages) and Spanish pages (n=17 pages) at 82%. Among the DFW organizations, the average accessibility of the Spanish pages (n=7) was slightly lower than that of the English pages (n=19) at 77% vs. 81%, respectively, due mostly to the discrepancy in English-only videos and visual aids. Twelve of the 50 websites (24%) had embedded videos in them, however 100% of videos were in English, including one that was on a Spanish website. CONCLUSIONS We identified an uneven response among the seven healthcare institutions to providing equitable information to Spanish-speaking DFW residents concerned about COVID and cancer. Spanish-speakers lack equal access in both diversity of content about COVID-19 and access to other websites, leaving an already vulnerable cancer patient population at greater risk. We recommend several specific actions to enhance content and navigability for Spanish-speakers.

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Providing cancer survivorship care plans for Spanish language speakers: Overall use and satisfaction patterns.

Journal of Clinical Oncology ◽

10.1200/jco.2013.31.15_suppl.e20671 ◽

2013 ◽

Vol 31 (15_suppl) ◽

pp. e20671-e20671

Author(s):

Christine Hill-Kayser ◽

Carolyn Vachani ◽

Margaret K. Hampshire ◽

Gloria A. Di Lullo ◽

James M. Metz

Keyword(s):

Cancer Survivorship ◽

Healthcare Providers ◽

Spanish Version ◽

Care Plan ◽

Cancer Information ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Care Plans ◽

Spanish Speaking ◽

The Us

e20671 Background: Cancer survivorship care plans may be communication aides to assist healthcare providers and empower survivors. A paucity of information exists regarding the provision of survivorship care plans to the Spanish speaking population. Methods: The LIVESTRONG Care Plan is an Internet-based tool for creation of survivorship care plans, originally launched in 5/07. It is available at www.livestrongcareplan.org, and via OncoLink, a cancer information website based at the University of Pennsylvania, serving over 3.9 million pages/ month to 185,000 unique IP addresses. A direct link on the homepage directs users to the Spanish version. All information is provided and translated by oncology nurses and physicians. Results: Since launch of the tool, 293 Spanish care plans have been created (1% of total care plans). Care plans in Spanish have been created by survivors in 78% of cases, and healthcare providers in 22%. This differs from the entire user population, in which use by HCP approaches 50% (p=< 0.001). Spanish-speaking users are 52% female, and 82% Latino/a, and less likely from the US (60% vs 87% , p=0.02), also being from Mexico (15%), Spain (10%), Chile (9%), Puerto Rico (5%) and Venezuela (3%). Spanish users were most often survivors of breast (20%) GU (33%) and GI (20%) cancers (vs general population 50%, p = 0.03; 10%, p = 0.04; 11%, p = 0.03, respectively). Only 8% of Spanish-speaking users report having received previous survivorship information vs 13% in the overall group (p=0.07). All users (100%) of the Spanish version rate experience and satisfaction with the care plan as “very good” or “excellent.” Average time for completion of Spanish plans was 9:28 min. Conclusions: Most users of the Spanish plan are survivors who have not received this information before, from the US and several Central/South American countries. They are highly satisfied with the information provided. Healthcare providers are proportionally less likely to use the Spanish version of the plan than survivors are.

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

Multilingua ◽

10.1515/multi-2021-0082 ◽

2021 ◽

Vol 0 (0) ◽

Author(s):

Rachel Showstack ◽

Silvia Duque ◽

Nikki Keene Woods ◽

Ana López ◽

Amy Chesser

Keyword(s):

Health Equity ◽

Healthcare Providers ◽

Spanish Speakers ◽

Community Members ◽

Patient Centered ◽

Community Based ◽

Community Needs ◽

Spanish Speaking ◽

Personal Experiences ◽

Engagement Process

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.

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CREATING DEMENTIA-FRIENDLY COMMUNITIES IN CENTRAL FLORIDA IN THE UNITED STATES

Innovation in Aging ◽

10.1093/geroni/igz038.1667 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S444-S444

Author(s):

Tracy Wharton ◽

Daniel Paulson ◽

Courtney Wagner

Keyword(s):

Law Enforcement ◽

Focus Groups ◽

Task Force ◽

Healthcare Providers ◽

The United States ◽

Culturally Competent ◽

Social Service Agencies ◽

Central Florida ◽

Emergency Personnel ◽

Training And Support

Abstract The Dementia Care & Cure Initiative in Florida is a statewide movement to advance dementia friendly communities. With 25% of the state over the age of 65, Florida has one of the highest rates of dementia in the nation. The taskforce based in Orlando involves a partnership of representatives from social service agencies, law enforcement, healthcare providers, and research partners, as well as consumers. The task force commissioned a series of five focus groups with 43 consumers. These focus groups produced short and long-term recommendations, identifying such issues as needed training for emergency personnel and law enforcement, improving inter-provider communication, and providing culturally competent programming for a diverse region. The taskforce has been planning with the Mayor’s office and law enforcement to initiate training and support for community engagement, and planning for implementation of these goals. Recommendations from the groups and from the taskforce to community leaders will be discussed.

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Adherence to Antidiabetic Medications among Women with Gestational Diabetes

Journal of Diabetes Research ◽

10.1155/2021/9941538 ◽

2021 ◽

Vol 2021 ◽

pp. 1-9

Author(s):

Michelle Asiedu-Danso ◽

Irene A. Kretchy ◽

Jeremiah Kobby Sekyi ◽

Augustina Koduah

Keyword(s):

Gestational Diabetes ◽

Assessment Tool ◽

Perinatal Outcomes ◽

Educational Interventions ◽

The United States ◽

Self Report ◽

Future Research ◽

Open Access Journals ◽

Scoping Reviews ◽

The Impact

Background. Optimal adherence to prescribed medications in women with gestational diabetes is relevant for perinatal outcomes. Objective. To summarize available information on the prevalence and factors contributing to medication adherence in women with gestational diabetes from the biological and psychosocial perspectives. Methods. A literature search on adherence in gestational diabetes was conducted in PubMed/MEDLINE, CINAHL, Scopus, and the Directory of Open Access Journals for studies published on the topic. The Arksey and O’Malley framework for scoping reviews was used to explore and summarize the evidence. Results. A total of 2395 studies were retrieved of which 13 fully met the eligibility criteria. The studies were reported in Zimbabwe ( n = 5 ), Iran ( n = 1 ), Mexico ( n = 1 ), South India ( n = 1 ), the United States of America ( n = 4 ), and one multinational study covering Australia, Europe, North and South America. The main types of antidiabetic medications used were insulin ( n = 6 ), metformin ( n = 4 ), and glyburide ( n = 2 ). The prevalence of adherence ranged from 35.6% to 97%, with the assessment tool being self-report measures ( n = 8 ). The main factors associated with nonadherence included worsening pregnancy symptoms, side effects of medications, perceived risks, mental health symptoms, poor social support, and socioeconomic status. Recommendations that evolved from the studies to improve adherence included education, counselling, improved support networks, and social interventions, while the main reported interventional study employed continuous education on the impact of adherence on perinatal outcomes. Conclusion. Medication nonadherence in gestational diabetes seems to be influenced by multiple factors with some educational interventions positively impacting adherence behaviours. Thus, future research in women with gestational diabetes could consider interventions from a multifactorial perspective to improve therapeutic outcomes.

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