Exploring immigrants’ perceptions of genetic counselling
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Date
2019-08-27
Authors
Hansen, Ashleigh
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Abstract
There has been a steady increase in immigration to Manitoba. Several studies have shown that immigrants face barriers when accessing health care services, such as cultural differences, language fluency, lack of social supports, and difficulties in understanding health care providers. Unfamiliarity with Westernized health care systems limits their knowledge of the services available and can affect their health care seeking decisions. Currently, there is limited information on immigrants’ use of genetic counselling services, as well as the ways in which genetic counsellors can best provide care. Previous genetic counselling research explored similar topics specific ethnic populations rather than the broad immigrant population. This exploratory study of immigrants’ perceptions and experience of genetic counselling services is necessary to understand how genetic counsellors can provide immigrants with culturally sensitive care that they can appropriately utilize.
Semi-structured interviews were conducted with new immigrants referred to the Program of Genetics & Metabolism in Winnipeg, Manitoba. Interviews investigated immigrants’ thoughts and opinions about genetic disease, testing, and counselling services. Convenience sampling was used to select participants. Eight participants were interviewed by telephone. Interviews were conducted until saturation of themes. Member checking was completed with a subset of respondents.
Genetic counselling was unknown to most participants before their referral, although there was a high interest in the service. Participants had varied levels of knowledge of genetic concepts, possibly resulting from experience, health literacy, and education levels. All participants reported that they were satisfied with this service. Participants described language barriers and reflected on how appropriate communication is essential to building trust, some highlighting a preference for non-directive counselling. Support systems were lacking but necessary when starting a new life in Canada and managing a new or future diagnosis. This study describes the relevance of medical pluralism in the context of genetic counselling of newcomer populations. Further, the results provide vivid descriptions of living with a genetic condition, caring for a relative with a condition, perceptions of genetic conditions and reasons for pursuing genetic services.
Our findings support major themes as previously reported. They demonstrate a need to increase awareness about genetic counselling within the immigrant community and to provide more support systems that are appropriate for newcomers.
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Keywords
Immigrants, Canada, Canadian immigrants, Newcomer, Refugee, Canadian refugee, Health care access, Barriers to health care, Genetic counselling, Genetic, Service delivery