A Look at the Decisions Hispanic Families Make After the Diagnosis of Deafness
Annie Steinberg, M.D., Lisa Bain, M.A., Yuelin Li, Ph.D., Louise Montoya, M.A., N.C.C., C.S.C., and Vivian Ruperto of the Children’s Seashore House at The Children’s Hospital of Philadelphia Copyright © 2002 by Laurent Clerc National Deaf Education Center
Gallaudet University, Washington, D.C.
Since individuals of Hispanic descent constitute the largest minority group in the United States, the authors wanted to explore how Hispanic parents make decisions for their deaf or hard of hearing child regarding using early intervention services and entering school. When a child has a hearing loss, parents need to decide how they will communicate with their child, how the child and/or the parent will learn to communicate effectively in the chosen modality, whether the child will use hearing aids or other assistive devices, whether the child will get early intervention services, and where the child will go to school. In addition to the decision about school are other important decisions such as whether the child will be in a class with other children with hearing loss or integrated into a mainstream classroom, and whether the child will receive special services to ameliorate the hearing loss.
This paper is based on a study that examined the decision-making process for Hispanic families living in the United States who have a child with a hearing loss. Twenty-nine families in four different geographical areas shared their experiences in learning about their child’s disability, searching for appropriate interventions, and making choices regarding communication and education. The authors explored the impact of language, culture, minority status, and access to information and services on the decision-making process. This document shows that there are barriers that sometimes prevent parents from participating fully in the decision-making process. The authors explored to what extent access to information — a requirement for shared decision making — is blocked in the Hispanic community by language and cultural factors, as well as by the limited availability of resources and knowledge of legal rights.
The Los Angeles Latino Eye Study: design, methods, and baseline data.
Varma R, Paz SH, Azen SP, Klein R, Globe D, Torres M, Shufelt C, Preston-Martin S; Los Angeles Latino Eye Study Group. Doheny Eye Institute and the Department of Ophthalmology, Keck School of Medicine, University of Southern California, Los Angeles, California, USA. email@example.com Ophthalmology. 2004 Jun;111(6):1121-31.
OBJECTIVE: To describe the study design, operational strategies, procedures, and baseline characteristics of the Los Angeles Latino Eye Study (LALES), a population-based assessment of the prevalence of visual impairment, ocular disease, and visual functioning in Latinos.
DESIGN: Population-based, cross-sectional study.
PARTICIPANTS: Six thousand three hundred fifty-seven Latinos 40 years and older from 6 census tracts in Los Angeles, California.
METHODS: A detailed interview and eye examination were performed on each eligible participant. The interview included an assessment of demographic, behavioral, and ocular risk factors and health-related and vision-related quality of life. The eye examination included a measurement of visual acuity, intraocular pressure, and visual fields; fundus and optic disc photography; a detailed anterior and posterior segment examination; and measurement of blood pressure, glycosylated hemoglobin levels, and blood glucose levels.
MAIN OUTCOME MEASURES: Prevalence of visual impairment, blindness, cataract, glaucoma, diabetic retinopathy, and age-related macular degeneration constitute the study’s primary outcome variables. Secondary outcomes include odds ratios for risk factors associated with eye disease, health-related quality of life, and vision-related quality of life. Response rates and baseline characteristics are presented.
RESULTS: Of the 7789 individuals eligible for LALES, 6357 (82%) had a clinical examination; an additional 524 completed only an in-home interview. The majority of participants were female (58%), the average (+/- standard deviation) age was 54.9 (+/-10.8) years, and 80.0% were of Mexican origin and 0.4% self-identified as American Indian or Alaskan Native. The age distribution of LALES participants was similar to that of Latinos of Mexican origin in the rest of the United States.
CONCLUSION: The LALES has recruited Latinos 40 and older for an ophthalmic epidemiologic study. The LALES cohort will provide information about the prevalence and risk factors of ocular disease in the largest and fastest growing minority in the United States.
Perceptions and needs of Hispanic and non-Hispanic parents of children receiving learning disabilities services
By Nydia Torres-Burgo, Red Oak School; Pamela Reyes-Wasson, Helen C. Peirce School; and Rita Brusca-Vega, Northeastern Illinois University Bilingual Research Journal Fall 1999 Volume 23, Number 4
The purpose of this study was: (a) to determine if and how the reported involvement and perceptions of Hispanic and non-Hispanic parents of children with learning disabilities differed with respect to the special education process in a large, culturally diverse, urban school district; and (b) to suggest ways in which the involvement of parents from diverse cultural and linguistic backgrounds might be advanced by local school personnel. Results indicated that while parents from both groups were often not adequately included in some of the most basic aspects of the special education process, Hispanic parents were at greater risk for poor treatment. This was especially true concerning knowledge of the IEP and communication with school personnel. The reluctance of principals to explore these issues was also revealed. Establishment of parent support groups in native language, collaboration between bilingual and special education staff, inclusion of bilingual parent advocates at staffings, and school-wide assessment of parent satisfaction and treatment are among the recommendations made.
Prevalence and risk indicators of visual impairment and blindness in Latinos: the Los Angeles Latino Eye Study.
Varma R, Ying-Lai M, Klein R, Azen SP; Los Angeles Latino Eye Study Group.
Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, California, USA. firstname.lastname@example.org Ophthalmology. 2004 Jun;111(6):1132-40.
OBJECTIVE: To determine the age- and gender-specific prevalence and risk indicators of visual impairment and blindness in urban Latinos 40 years and older. DESIGN: Population-based cross-sectional study. PARTICIPANTS: Six thousand three hundred fifty-seven Latinos 40 years and older from 6 census tracts in Los Angeles, California.
METHODS: Of the 6357 study participants, 6122 underwent a complete ophthalmologic examination at the clinical center, including measurement of best-corrected distance visual acuity (VA) using a standard Early Treatment Diabetic Retinopathy Study protocol. Age- and gender-specific prevalence of visual impairment and blindness were contrasted using Mantel-Haenszel procedures. Sociodemographic and clinical risk indicators of visual impairment were explored using stepwise logistic regression.
MAIN OUTCOME MEASURES: Prevalence and odds ratios for risk indicators of visual impairment and blindness.
RESULTS: The overall prevalence for visual impairment (best-corrected VA of <==20/40 in the better eye) was 3.0% (n = 182) (range, 0.9% [40-49 years]-27.8% [>/=80 years]). The overall prevalence for blindness (best-corrected VA of <==20/200 in the better eye) was 0.4% (n = 26) (range, 0.2% [40-49 years]-4.2% [>/=80 years]). Visual impairment increased with age (P<0.0001) and was greater in women (P = 0.02). Independent risk indicators (odds ratio [95% confidence interval]) for visual impairment were age 70-79 years (2.8 [1.3-5.8]) or >/=80 years (8.7 [3.9-19.6]), history of ocular disease (3.2 [2.1-4.8]), being unemployed (3.3 [1.7-6.3]), diabetes (2.2 [1.5-3.2]), and being separated/divorced (1.8 [1.0-3.1]) or widowed (2.8 [1.8-4.4]). Participants with >/=12 years of education (0.5 [0.3-0.8]) were less likely to be visually impaired.
CONCLUSIONS: Rates of visual impairment and blindness in Latinos are high, especially in older individuals. Better education and employment are likely to decrease the burden of visual impairment in Latinos.
Service utilization among disabled Puerto Rican elders and their caregivers: does acculturation play a role?
Calderon-Rosado V. Morrill A. Chang BH. Tennstedt S. Journal of Aging & Health. 14(1):3-23, 2002 Feb.
OBJECTIVE. This study examined the relationship between language acculturation of disabled Puerto Rican elderly and their caregivers, their length of residence in mainland United States, and the utilization of formal services.
METHODS. Language acculturation was measured by language use, understanding, and preferences. The sample of this study consisted of 194 dyads of disabled Puerto Rican elders 60 years and older, and their primary caregivers in an urban center in the northeast.
RESULTS. Length of residence in the United States, but not language acculturation, of the disabled Puerto Rican elder and the caregiver was related to elder’s use of formal services. Caregivers, whose own children were born in Puerto Rico as opposed to mainland United States, were more likely to use formal services.
DISCUSSION. Language acculturation, although a commonly used measure of acculturation, may be of decreasing importance in explaining service utilization, as bilingual services become increasingly available. Practice implications are discussed.