Systematic ascertainment of women early in pregnancy, preferably in a population base, is needed for assessment of true risks. Long-term follow-up is needed to rule out neurobehavioral effects.
Hispanics are among the fastest growing U.S. population segments, accounting for the majority of growth since 2000. Hispanics are heterogeneous and include foreign‐born and U.S. citizens, monolingual fluent English speakers, monolingual Spanish‐speakers, multilingual speakers, and socioeconomically and educationally diverse subgroups. States within the central United States (U.S.), referred to as the Heartland, have numerically small Hispanic populations, but rapidly growing Hispanic populations that are expanding faster than the overall U.S. Hispanic population. The Hispanic populations across the U.S. are widely known to be medically underserved. This qualitative study identifies barriers native Spanish‐speakers experience when locating and accessing genetic services for their children. After providing informed consent, 29 parents in three Heartland states were interviewed and asked about their awareness of available genetic services, utilization of available services and difficulties they encountered when using them. Interviewees reported delayed genetic service referrals, limited availability and inadequate interpretation services, verbal and written communication problems during clinic visits, culturally incongruent healthcare expectations and limited appreciation for how genetic services benefit them. Necessary efforts to understand and improve genetic service access and usefulness for Hispanic populations are underway in the Heartland and elsewhere and should continue to be expanded.
The United States (U.S.) resident Marshallese population is growing rapidly. Subsequent to this growth, Marshallese patients experience language and cultural barriers when attempting to access medical care in the U.S. This study: (a) documents how the Marshallese refer to biological and adopted family members; (b) identifies barriers encountered by Marshallese when seeking medical care; and (c) describes effective communication strategies for healthcare providers to use when treating Marshallese patients. Six key informant interviews were conducted in English with bicultural (U.S. and native Marshallese) informants, the majority of whom were women who worked in a healthcare setting. Participants were recruited through the Center for Pacific Islander Health in Arkansas and through personal contacts within the Marshallese community. Based on the study findings, examples of how providers can make genetic services more accessible and meaningful for Marshallese patients are also provided. This study is particularly relevant to genetic counselors as the number of Marshallese patients and families needing their services is growing.
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