Genetic Counseling for Early‐onset Familial Alzheimer Disease in Large Aboriginal Kindred from a Remote Community in British Columbia: Unique Challenges and Possible Solutions

Butler, Rachel; Dwosh, Emily; Beattie, B. Lynn; Guimond, Colleen; Lombera, Sofia; Brief, Elana; Illes, Judy; Sadovnick, A. Dessa

doi:10.1007/s10897-010-9334-9

Cited by 12 publications

(15 citation statements)

References 6 publications

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“…13,18 Geographical location of the genetic services and the practices of the HCPs (urban vs rural) clearly affect awareness as well as access to genetic services and resources by HCPs in the literature. 23,53 The attitude of primary care physicians has also been found to have an impact on patients' access to genetic services. Research has shown that physicians who have negative attitudes or misconceptions about the clinical utility and benefits of a genetic service are less likely to suggest genetic counselling to their patients or refer them to the genetic services.…”

Section: Discussionmentioning

confidence: 99%

A systematic review of factors that act as barriers to patient referral to genetic services

et al. 2014

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Patients who might benefit from genetic services may be denied access through failure to be referred. To investigate the evidence on barriers to referral to genetic services, we conducted a systematic review of empirical evidence on this topic. Nine studies were included in the review. Barriers related to non-genetic healthcare professionals were: lack of awareness of patient risk factors, failure to obtain adequate family history, lack of knowledge of genetics and genetic conditions, lack of awareness of genetic services, inadequate coordination of referral and lack of genetics workforce. Those related to individuals affected by or at risk of a genetic condition were: lack of awareness of personal risk, lack of knowledge and/or awareness of medical history of family members and lack of knowledge of genetic services. Research on access to genetic services is heterogeneous; stronger empirical evidence is needed on factors that are barriers, and further research is needed to develop 'targeted interventions' for equitable access to genetic services in a range of populations.

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Section: Discussionmentioning

confidence: 99%

A systematic review of factors that act as barriers to patient referral to genetic services

et al. 2014

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“…Even if the indigenous subpopulation is recognized, generally there is a broader unfamiliarity with their customs and beliefs. Additionally, the challenges can be greater when discussing the basic tenets of genetics because the concepts of “genes,” inheritance patterns, and other similar topics cannot be understood given the educational background and the fact that equivalent terms in many languages simply do not exist (Butler et al 2011; Dukepoo 1998; Kelly 2009; Kowal et al 2015; Mittman et al 1998; Penn et al 2010; Port et al 2008; Raz and Atar 2003; Solomon et al 2012). The widely varying dialects and severe lack of medically qualified interpreters present further communication barriers.…”

Section: Introductionmentioning

confidence: 99%

Identifying and Addressing Genetic Counseling Challenges among Indigenous People of Oaxaca—One Center's Experience with Two Immigrant Farmworker Families in the Central Valley of California

Shen

Carmichael

Santos³

2018

Journal of Genetic Counseling

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An important aspect of genetic counseling is the recognition of and adaptation to the socio-cultural uniqueness of the different populations that a genetics clinic serves. The Central Valley of California is home to a large population from Mexico, with a significant proportion of indigenous ancestry originating from the state of Oaxaca. We report on our experience with two families of this community—one extended family with an early lethal inborn error of metabolism and the other with a chronic disfiguring form of ichthyosis. We identified multiple important factors that needed to be considered, including the matching of language dialects, adaptation to different social interaction conventions, acknowledgement of traditional medicine beliefs, and effective transmission of genetic terms and concepts, all of which should be incorporated into the interactions with these families when aiming to provide comprehensive genetic counseling.

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“…Cultural understandings / constructions (n = 5) Butler, R., Dwosh, E., Beattie, B. L., Guimond, C., Lombera, S., Brief, E., et al (2011). Genetic counseling for early-onset familial Alzheimer disease in large Aboriginal kindred from a remote community in British Columbia: Unique challenges and possible solutions.…”

Section: Type Of Resourcementioning

confidence: 99%

Cultural Understandings of Dementia in Indigenous Peoples: A Qualitative Evidence Synthesis

Jacklin

Walker

2019

Can. J. Aging

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RÉSUMÉLes démences liées à l’âge constituent un problème de santé important au Canada, en particulier chez les communautés autochtones, où les taux de démences surpassent d’environ 34 % ceux retrouvés dans la population canadienne. Cette étude présente une synthèse des données qualitatives tirées des articles traitant de la compréhension culturelle des démences chez les peuples autochtones du Canada. Les résultats principaux suggèrent que peu de recherches ont été effectuées dans ce domaine, en particulier chez les Inuits et les Métis, malgré une progression de l’exploration de ce sujet au Canada. La synthèse de la littérature a révélé que la démence est perçue comme une partie naturelle du cycle de vie par de nombreux Autochtones. Bien que les modèles communautaires et informels de soins soulèvent d’importants défis pour les aidants naturels, ils sont régulièrement appliqués. Cette synthèse sera utile pour les organismes et les prestataires de soins de santé qui recherchent des approches appropriées pour répondre aux besoins des patients et des familles autochtones aux prises avec la démence.

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Genetic Counseling for Early‐onset Familial Alzheimer Disease in Large Aboriginal Kindred from a Remote Community in British Columbia: Unique Challenges and Possible Solutions

Cited by 12 publications

References 6 publications

A systematic review of factors that act as barriers to patient referral to genetic services

A systematic review of factors that act as barriers to patient referral to genetic services

Identifying and Addressing Genetic Counseling Challenges among Indigenous People of Oaxaca—One Center's Experience with Two Immigrant Farmworker Families in the Central Valley of California

Cultural Understandings of Dementia in Indigenous Peoples: A Qualitative Evidence Synthesis

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