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Bridging uncharted waters in Georgia: Down Syndrome Association of Atlanta outreach to Latino/a families.

Receiving the news that your newborn child has Down syndrome is difficult for most parents; difficulties which are compounded by language and cultural barriers for immigrant Latino/a families. The metro Atlanta area has shown a large increase in this population in the last 10 years, and increasing numbers of Latino/a parents with children with Down syndrome are coming in contact with the health care system. Experiences and observations regarding the formation of a Latino/a support group for parents of children with Down syndrome in Atlanta are described. In addition, efforts to integrate these Latino/a parents into a parent education conference sponsored by the Down Syndrome Association of Atlanta are also recounted. Finally, reflections upon the lessons learned and individual and organizational changes that occurred as a result of the process are discussed.

Child↗

Self report in clinical and epidemiological studies with non-English speakers: the challenge of language and culture.

Internationally, there is a drive for equality in health care for ethnic groups. To achieve equality, produce sound policies, and provide appropriately targeted services good quality data are essential. Where data are based upon self report, especially from non-English speakers, there are major barriers to the accumulation of reliable and valid information. When data collection instruments designed for English speakers are simply translated into ethnic minority languages, measurement error can result from inadequate translation procedures, inappropriate content, insensitivity of items, and the failure of researchers to make themselves familiar with cultural norms and beliefs. More attention should be paid to conceptual and cultural factors especially in epidemiological and clinical studies where self report is used to gather data. More interdisciplinary collaboration is necessary as well as a modification of customary methods of data collection and the assumptions behind them. The essence of such modifications entails participatory research with members of the linguistic communities concerned.

Communication Barriers↗

Disclosing conflicts of interest in clinical research: views of institutional review boards, conflict of interest committees, and investigators.

Strategies for disclosing investigators' financial interests to potential research participants have been adopted by many research institutions. However, little is known about how decisions are made regarding disclosures of financial interests to potential research participants, including what is disclosed and the rationale for making these determinations. We sought to understand the attitudes, beliefs, and practices of institutional review board chairs, conflict of interest committee chairs, and investigators regarding disclosure of financial interests to potential research participants. Several themes emerged, including general attitudes toward conflicts of interest, circumstances in which financial interests should be disclosed, rationales and benefits of disclosure, what should be disclosed, negative effects of and barriers to disclosure, and timing and presentation of disclosure. Respondents cited several rationales for disclosure, including enabling informed decision making, promoting trust in researchers and research institutions, and reducing legal liability. There was general agreement that disclosure should happen early in the consent process. Respondents disagreed about whether to disclose the amounts of particular financial interests. Clarifying the goals of disclosure and understanding how potential research participants use the information will be critical in efforts to ensure the integrity of clinical research and to protect the rights and interests of participants.

Attitude of Health Personnel↗

Barriers to the construction of a valued social identity: a case study of Alzheimer's disease.

This case study describes a person with mild-to-moderate stage Alzheimer's disease (AD) and examines the relationship between malignant positioning and the ability of a person with AD to gain the cooperation of healthy persons to construct a valued social identity. Findings reveal that malignant positioning limited the person with AD to the embarrassing social identity of dysfunctional patient; whereas, the absence of such positioning allowed the subject to gain the cooperation from others necessary to construct a valued social identity, as well as reduce embarrassment and experience greater sense of self-worth. Preliminary recommendations on reducing malignant positioning are provided. Further research is required to elucidate the degree to which the present findings may be generalized.

Aged↗

[Refugees, migrants, language barrier: opinion of physicians on translation aids].

When the patient and caregiver do not share a common language, an interpreter is not always the best solution, and in any case, one cannot be present for every visit, especially in the case of an emergency. According to a questionnaire that was sent to all of the physicians who are members of a health care network for asylum seekers in the Swiss canton of Vaud (n = 169), it appears that 45% of practitioners found a telephone translation service to be a practical solution, and 58% would like medical glossaries with phonetic pronunciation and visual illustrations made available. With a response rate of 91%, it is estimated that these two types of services would be used as often as qualified interpreters, if they were made available. Other translating aids are also proposed.

Communication Barriers↗

An individualized intervention to overcome patient-related barriers to pain management in women with gynecologic cancers.

Concerns about reporting pain and using analgesics ultimately can contribute to poor pain management for many individuals. A nursing intervention to address these "patient-related barriers" was developed based on Johnson's self-regulation theory. The purpose of this pilot study was to determine whether provision of individually tailored sensory and coping information about analgesic side effects and specific information to counter misconceptions would enhance pain management in a sample of 43 women with gynecologic cancers. It was hypothesized that at 1-month post-test and 2-month follow-up, those subjects randomized to the information condition would (a) have lower barriers scores; (b) use more adequate analgesic medication; (c) have lower analgesic side effect scores; (d) have lower pain intensity scores; and (e) experience less pain interference with life and better overall quality of life compared to those in the care-as-usual control group. There was no main effect for group on any of the dependent variables. Rather, all women reported a decrease in barriers between baseline and 2-month follow-up (p<.05); all subjects experienced a decrease in pain interference with life scores between baseline and 1-month post-test (p<.05); and there was a significant shift of women from unacceptable pain management at baseline to acceptable pain management at 1-month post-test (p<.05). In addition, the majority of women reported that the intervention contained novel and useful information that helped them to feel more comfortable taking pain medication, to be less concerned about addiction, and helped them talk more openly about pain with a doctor or nurse.

Adaptation, Psychological↗

Korean women living in the United States as student wives.

Korean students' wives who travel with their husbands to the United States while they pursue academic degrees often experience the extremes of assimilation into the host culture. The purpose of this study is to address the following questions: (a) What are the processes used by Korean women to adapt to life in the United States, and (b) what are the barriers they encounter, as wives of students and mothers of their children, in adapting to this new life? Fourteen Korean wives were interviewed. All interviews were completed in Korean and transcribed verbatim. The study reveals eight phases to the basic social process of adjusting to life in the United States: preconfronting, confronting, discovering, undergoing crisis, seeking, reorienting, reflecting, and reconfronting. These were observed to be dynamic and recurrent ongoing phases that are likely to repeat themselves. The study findings provide health care practitioners with a better understanding of Korean wives' adjustment to life in the United States and suggest the development of culturally appropriate interventions.

Acculturation↗

International patients: a different market with different security needs.

Different customs ... language barriers ... unfamiliarity with this country. These problems of foreign patients and the visitors that accompany them can be also cause problems for hospital security departments--especially those who fail to prepare for this growing healthcare market. According to recent articles in leading publications, the immigration boom, continuing demographic shifts in urban America, and an influx of hospital marketing campaigns aimed at affluent foreign clients have more and more healthcare organizations involved in trying to bridge the culture gap. In this report, we'll give details on how five major hospitals that actively seek foreign patients are organized to meet their security needs and relate what happened when a foreign celebrity unexpectedly became a patient at a county hospital.

Communication Barriers↗

Is language a barrier to the use of preventive services?

OBJECTIVE: To isolate the effect of spoken language from financial barriers to care, we examined the relation of language to use of preventive services in a system with universal access. DESIGN: Cross-sectional survey. SETTING: Household population of women living in Ontario, Canada, in 1990. PARTICIPANTS: Subjects were 22,448 women completing the 1990 Ontario Health Survey, a population-based random sample of households. MEASUREMENTS AND MAIN RESULTS: We defined language as the language spoken in the home and assessed self-reported receipt of breast examination, mammogram and Pap testing. We used logistic regression to calculate odds ratios for each service adjusting for potential sources of confounding: socio-economic characteristics, contact with the health care system, and measures reflecting culture. Ten percent of the women spoke a non-English language at home (4% French, 6% other). After adjustment, compared with English speakers, French-speaking women were significantly less likely to receive breast exams or mammography, and other language speakers were less likely to receive Pap testing. CONCLUSIONS: Women whose main spoken language was not English were less likely to receive important preventive services. Improving communication with patients with limited English may enhance participation in screening programs.

Adolescent↗

Impact of language barriers on patient satisfaction in an emergency department.

OBJECTIVE: To examine patient satisfaction and willingness to return to an emergency department (ED) among non-English speakers. DESIGN: Cross-sectional survey and follow-up interviews 10 days after ED visit. SETTING: Five urban teaching hospital EDs in the Northeastern United States. PATIENTS: We surveyed 2,333 patients who presented to the ED with one of six chief complaints. MEASUREMENTS AND MAIN RESULTS: Patient satisfaction, willingness to return to the same ED if emergency care was needed, and patient-reported problems with care were measured. Three hundred fifty-four (15%) of the patients reported English was not their primary language. Using an overall measure of patient satisfaction, only 52% of non-English-speaking patients were satisfied as compared with 71% of English speakers (p < .01). Among non-English speakers, 14% said they would not return to the same ED if they had another problem requiring emergency care as compared with 9.5% of English speakers (p < .05). In multivariate analysis adjusting for hospital site, age, gender, race/ethnicity, education, income, chief complaint, urgency, insurance status, Medicaid status, ED as the patient's principal source of care, and presence of a regular provider of care, non-English speakers were significantly less likely to be satisfied (odds ratio [OR] 0.59; 95% confidence interval [CI] 0.39, 0.90) and significantly less willing to return to the same ED (OR 0.57; 95% CI 0.34, 0.95). Non-English speakers also were significantly more likely to report overall problems with care (OR 1.70; 95% CI 1.05, 2.74), communication (OR 1.71; 95% CI 1.18, 2.47), and testing (OR 1.77; 95% CI 1.19, 2.64). CONCLUSIONS: Non-English speakers were less satisfied with their care in the ED, less willing to return to the same ED if they had a problem they felt required emergency care, and reported more problems with emergency care. Strategies to improve satisfaction among this group of patients may include appropriate use of professional interpreters and increasing the language concordance between patients and providers.

Adult↗

Language proficiency and the enrollment of Medicaid-eligible children in publicly funded health insurance programs.

OBJECTIVES: The purpose of the study was to examine the effect of language proficiency on enrollment in a state-sponsored child health insurance program. METHODS: 1055 parents of Medicaid-eligible children, who were enrolled in a state-sponsored child health insurance program, were surveyed about how they learned about the state program, how they enrolled their children in the program, and perceived barriers to Medicaid enrollment. We performed weighted chi2 tests to identify statistically significant differences in outcomes based on language. We conducted multivariate analyses to evaluate the independent effect of language controlling for demographic characteristics. RESULTS: Almost a third of families did not speak English in the home. These families, referred to as limited English proficiency families, were significantly more likely than English-proficient families to learn of the program from medical providers, to receive assistance with enrollment, and to receive this assistance from staff at medical sites as compared to the toll-free telephone information line. They were also more likely to identify barriers to Medicaid enrollment related to "know-how"--that is, knowing about the Medicaid program, if their child was eligible, and how to enroll. Differences based on language proficiency persisted after controlling for marital status, family composition, place of residence, length of enrollment, and employment status for almost all study outcomes. CONCLUSIONS: This study demonstrates the significant impact of English language proficiency on enrollment of Medicaid-eligible children in publicly funded health insurance programs. Strong state-level leadership is needed to develop an approach to outreach and enrollment that specifically addresses the needs of those with less English proficiency.

Aid to Families with Dependent Children↗

The digital divide in public e-health: barriers to accessibility and privacy in state health department websites.

State health departments have placed a tremendous amount of information, data, and services online in recent years. With the significant increase in online resources at official health sites, though, have come questions concerning equity of access and the confidentiality of electronic medical materials. This paper reports on an examination of public health department websites maintained by the 50 state governments. Using a content analysis of health department sites undertaken each year from 2000 to 2005, we investigate several dimensions of accessibility and privacy: readability levels, disability access, non-English accessibility, and the presence of privacy and security statements. We argue that although progress has been made at improving the accessibility and confidentiality of health department electronic resources, there remains much work to be done to ensure quality access for all Americans in the area of public e-health.

Communication Barriers↗

Barriers to condom use and needle cleaning among impoverished minority female injection drug users and partners of injection drug users.

This study was undertaken to describe sexual behaviors and drug use and other factors that inhibit condom use and needle cleaning among impoverished women who are injection drug users (IDUs) or sexual partners of IDUs. This study also investigated whether risky sexual behavior or barriers to risk reduction differ with ethnicity and level of acculturation. Survey instruments to assess drug and sexual activity were administered to 378 African American and Latina women recruited primarily from homeless shelters and drug recovery programs. The most commonly cited barriers to condom use were belief that partners did not have acquired immunodeficiency syndrome (AIDS), lack of knowledge about where to get and how to use condoms, and discomfort discussing condom use with partners. African American women were more likely to report having multiple partners and unprotected sex, and more likely to report barriers in using, discussing, and obtaining condoms. Latina women were more likely to report partners' dislike of condoms. African American and highly acculturated Latina women were more likely to be IDUs than less acculturated Latina women. The most pervasive barriers for needle cleaning were not having personal needles, being high and not interested in needle cleaning, and not having disinfectant available. In a multiple logistic regression analysis for engaging in unprotected sex and cleaning needles, not ethnic or acculturation differences were found after controlling for selected demographic characteristics and risk factors. The data indicate a need to increase the supply of free or low cost condoms, to provide easily accessible sites for obtaining condoms, to supply clean needles,and to focus counseling for women on negotiating condom use with partners and the skillful and correct placement of the condom.

Adolescent↗

Barriers to disclosure to children with HIV.

Research suggests that it is healthy for children with chronic illness to discuss their illness, but clinical experience and research indicate that this seldom occurs. The purpose of this study was to identify barriers which prevent primary caregivers from discussing HIV/AIDS with children, and ways in which medical and community services could facilitate this process. Focus groups were performed with seventeen primary caregivers of children with HIV seen for care at Chris Hani Baragwanath Hospital in Soweto, South Africa in 2001. The study revealed that primary caregivers of children with HIV typically do not disclose HIV status to their children, despite the fact that these children often ask questions about their illness. For reasons including stigma, lack of knowledge and skills, and emotional unpreparedness, primary caregivers feel uncomfortable discussing HIV and illness with children. Health care and social service providers could facilitate disclosure of illness to children with HIV.

Adolescent↗

Cultural barriers to exclusive breastfeeding by mothers in a rural area of Cameroon, Africa.

Because of the known nutritional and health benefits to the infant, the World Health Organization recommends that women in resource-poor countries exclusively breastfeed until their babies reach 6 months of age. In the primarily rural geographical region of the North West Province of Cameroon, previous studies identified the prevalence of breastfeeding to be 90%. It is common knowledge that women are culturally encouraged to mix-feed their infants, but the extent of these feeding practices is not known. The objective of this study was to identify the extent of mixed feeding/supplementation and the cultural/social barriers to exclusive breastfeeding. All women surveyed introduced water and food supplementation prior to 6 months of age, with more than 38% giving water in the first month of life. Mothers identified cultural factors influencing their decision to mix-feed their babies, which included 1) pressures by village elders and families to supplement because it is a traditional practice, 2) belief that breast milk is an incomplete food that does not increase the infants weight, 3) belief that all family members should receive the benefit of food grown in the family farm, and 4) the taboo of prohibiting sexual contact during breastfeeding.

Adolescent↗

Defining cultural competence: a practical framework for addressing racial/ethnic disparities in health and health care.

OBJECTIVES: Racial/ethnic disparities in health in the U.S. have been well described. The field of "cultural competence" has emerged as one strategy to address these disparities. Based on a review of the relevant literature, the authors develop a definition of cultural competence, identify key components for intervention, and describe a practical framework for implementation of measures to address racial/ethnic disparities in health and health care. METHODS: The authors conducted a literature review of academic, foundation, and government publications focusing on sociocultural barriers to care, the level of the health care system at which a given barrier occurs, and cultural competence efforts that address these barriers. RESULTS: Sociocultural barriers to care were identified at the organizational (leadership/workforce), structural (processes of care), and clinical (provider-patient encounter) levels. A framework of cultural competence interventions--including minority recruitment into the health professions, development of interpreter services and language-appropriate health educational materials, and provider education on cross-cultural issues--emerged to categorize strategies to address racial/ethnic disparities in health and health care. CONCLUSIONS: Demographic changes anticipated over the next decade magnify the importance of addressing racial/ethnic disparities in health and health care. A framework of organizational, structural, and clinical cultural competence interventions can facilitate the elimination of these disparities and improve care for all Americans.

Attitude of Health Personnel↗

Voices of South Asian women: immigration and mental health.

PURPOSE: This qualitative research aimed to elicit experiences and beliefs of recent South Asian immigrant women about their major health concerns after immigration. METHODS: Four focus groups were conducted with 24 Hindi-speaking women who had lived less than five years in Canada. The audiotaped data were transcribed, translated, and analyzed by identification of themes and subcategories. RESULTS: Mental health (MH) emerged as an overarching health concern with three major themes i.e. appraisal of the mental burden (extent and general susceptibility), stress-inducing factors, and coping strategies. Many participants agreed that MH did not become a concern to them until after immigration. Women discussed their compromised MH using verbal and symptomatic expressions. The stress-inducing factors identified by participants included loss of social support, economic uncertainties, downward social mobility, mechanistic lifestyle, barriers in accessing health services, and climatic and food changes. Women's major coping strategies included increased efforts to socialize, use of preventative health practices and self-awareness. CONCLUSION: Although participant women discussed a number of ways to deal with post-immigration stressors, the women's perceived compromised mental health reflects the inadequacy of their coping strategies and the available resources. Despite access to healthcare providers, women failed to identify healthcare encounters as opportunities to seek help and discuss their mental health concerns. Health and social care programs need to actively address the compromised mental health perceived by the studied group.

Adaptation, Psychological↗

Overcoming language barriers for non-English speaking patients.

Although some of the resources or services listed may seem expensive, it is cheaper to use these than to face a malpractice suit for failure to provide patients with limited English access to services equal to those provided to English speakers. The University of California at San Francisco (UCSF), one of the top three ranking research hospitals in the U.S., had a suit filed against it by the American Civil Liberties Union (ACLU) claiming failure to provide adequate translation services for the patient population. The university is now a participant in a statewide effort to provide access to well-trained translator services to the patient population. This effort and the development of an in-house interpreter services department has contributed to a competitive edge for UCSF in the area of patient services and satisfaction as well as attracting more Medicaid patients, which increases their revenues.

Audiovisual Aids↗