Resources/Referral/Follow Up

Resources

Culture, Poverty, and Health Disparities

Carteret, M. (2009) Healthcare for Middle Eastern Patients and Families. Dimensions of Culture, Carteret Communications.
Accessed July 22, 2010 from http://www.dimensionsofculture.com/home/healthcare_for_middle_eastern_patients_families

Freeman, H.P. (2004). Poverty, Culture, and Social Injustice: Determinants of Cancer Disparities. CA Cancer J Clin 54; 72-77.

Immigrants and Health Coverage: A Primer. Kaiser Commission on Medicaid and the Uninsured. June 2004.

Kagawa-Singer, M. , Dadia, A.V., Yu, M.C., & Surbone, A. (2010). Cancer, Culture, and Health Disparities: Time to Chart a New Course? CA Cancer J Clin 60; 12-39.

Koya, D.L. & Egege, L.E. (2007). Association Between Length of Residence and Cardiovascular Disease Risk Among an Ethnically Diverse Group of United States Immigrants. Society of General Internal Medicine 22: 841-846.

Nasseri, K., Mills, P.K., & Allan, M. (2007). Cancer Incidence in the Middle Eastern Population of California, 1988-2004. Asian Pac J Cancer Prev 8(3): 405-411.

Payne, Ruby K. A Framework for Understanding Poverty, Fourth Edition, 2005. Aha! Process, Highlands, Tx.

Siddiqi, A., Zuberi, D, & Nguyen, Q.C. (2009. The role of health insurance in explaining immigrant versus non-immigrant disaparities in access to health care: Comparing the United States to Canada. Social Science and Medicine Vol 69, Issue 10, 1452-1459.

Unequal Treatment (2003). Smedley, B.D., Stith, A.Y., & Nelson, A.R. Editors, Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, The National Academies Press.

Working with Consanguineous Couples

Bennett, R.L., et al. (2002). Genetic counseling and screening of consanguineous couples and their offspring: Recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 11(2), 97-119.

Bennett, R.L., et al. (2020). Genetic counseling and screening of consanguineous couples and their offspring practice resource: Focused Revision. J of Genetic Counseling 30; 1354-1357.

Fathzadeh, M., Ali Babaie Bigi, M., Bazrgar, M., Tavarian, M., Reza Tabatabaee, H., & Akrami, S.M. (2008). Genetic counseling in Southern Iran: Consanguinity and reason for referral. Journal of Genetic Counseling, 17, 472-479.

Hussain, R. (1999). Community perceptions of reasons for preference for consanguineous marriages in Pakistan. Journal of Biosocial Science, 31, 449-461.

Modell, B. & A. Darr. (2002). Genetic counseling and customary consanguineous marriage. Nature Reviews Genetics, 3, 225-229.

Shaw, A., & J.A. Hurst. (2008). “What is this genetics, anyway?” Understandings of genetics, illness causality and inheritance among British Pakistani users of genetic services. Journal of Genetic Counseling, 17, 373-383.

Shiloh, S., Reznik, H., Bat-Miriam-Katznelson, M., & Goldman, B. (1995). Pre-marital genetic counseling to consanguineous couples: Attitudes, beliefs and decisions among counseled, non-counseled and unrelated couples in Israel. Social Science in Medicine, 41(9), 1301-1310.

Foreign Language Health Information Resources

Consumer Health Information in Many Languages, compiled by the National Network of Libraries in Medicine: https://www.medlineplus.gov/healthtopics.html
Provides links to outside websites that house compilations of resources in multiple target languages. Searchable by language.

RHIN: https://brycs.org/clearinghouse/5291/
The Refugee Health Information Network (RHIN is a national collaborative partnership managed by refugee health professionals whose objective is to provide quality multilingual health information resources for those providing care to resettled refugees and asylees.

EthnoMed: http://ethnomed.org
EthnoMed provides free access to patient education materials and information about numerous language and cultural groups.

Health Information Translations: https://www.healthinfotranslations.org/
This site offers patient information in 17 languages on topics such as disaster preparedness, surgeries, pregnancy and various other subject areas.

24 Languages Project: https://ethnomed.org/about/related-programs/24-languages-project
This site has audio recording and brochures in English as well as 24 other languages.

MedlinePlus: Health information in Multiple Languages
http://www.nlm.nih.gov/medlineplus/languages/languages.html

Health Literacy

AMA Video on Health Literacy:
https://www.youtube.com/watch?v=ubPkdpGHWAQ
https://www.youtube.com/watch?v=cGtTZ_vxjyA
This video focuses on health literacy and its impact on health care.

Baker, D.L., Eash, T., Schuette, J.L., & Ulhmann, W.R. (2002). Guidelines for writing letters to patients. Journal of Genetic Counseling, 11(5), 399-418.

Cornett, S. (n.d.). Health literacy: End the Confusion and Help Your Patients Understand. AHEC Health Literacy Program, The Ohio State University, Columbus, OH.

Shedlosky-Shoemaker, R., Sturm, A.C., Saleem, M., & Kelly, K.M. (2009). Tools for Assessing Readability and Quality of Health-Related Web Sites. Journal of Genetic Counseling, 18:49-59.

Creating Culturally Sensitive Written Materials

Shaw, A., & M. Ahmed. (2004). Translating genetics leaflets into languages other than English: Lessons from an assessment of Urdu materials. Journal of Genetic Counseling, 13(4), 321-342.

Simpson, E., Gawron, T., Mull, D., & Walker, A.P. (1994). A Spanish-language prenatal family history evaluation questionnaire: Construction and pilot implementation. Journal of Genetic Counseling, 3(1), 39-62.

Lay Understanding of Genetics

Armeli, C., Robbins, S.J., & Eunpu, D. (2005). Comparing knowledge of B-thalassemia in samples of Italians, Italian-Americans, and Non-Italian-Americans. Journal of Genetic Counseling, 14(5), 365-376.

Boyd, J.H., Watkins, A.R., Price, C.L., Fleming, F., & DeBaun, M.R. (2005). Inadequate community knowledge about sickle cell disease among African-American women. Journal of the National Medical Association, 97(1), 62-67.

Chapple, A., May, C., & Campion, P. (1995). Lay understanding of genetic disease: A British study of families attending a genetic counseling service. Journal of Genetic Counseling, 4(4), 281-300.

Condit, C., Dubriwny, T., Lynch, J., & Parrott, R. (2004). Lay people’s understanding and preference against the word “mutation.”
American Journal of Medical Genetics, 130A, 245-250.

Kessler, L., Collier, A., & Hughes Halbert, C. (2007). Knowledge about genetics among African Americans. Journal of Genetic Counseling, 16(2), 191-200.

Lanie, A.D., Jayaratne, T.E., Sheldon, J.P., Kardia, S.L.R, Anderson, E.S., Feldbaum, M., & Petty, E.M. (2004). Exploring the public understanding of basic genetic concepts. Journal of Genetic Counseling, 13(4), 305-320.

McAllister, M. (2003). Personal theories of inheritance, coping strategies, risk perception and engagement in hereditary non-polyposis colon cancer families offered testing. Clinical Genetics, 64, 179-189.

Research

Aksoy, S. & Elmali, A. (2002). The core concept of the four principles of bioethics as found in Islamic tradition. Med Law 21:211-214.

Al Aqeel, A. (2007). Islamic ethical framework for research into and prevention of genetic disease. Nature Genetics, 39(11), 1293-8.

Corbie-Smith, G. (1999). The Continuing Legacy of the Tuskegee Syphilis Study: Considerations for Clinical Investigation. American Journal of the Medical Sciences, 317(1): 5-8.

Hunt, L. M. & de Voogd, K. B. (2007). Are Good Intentions Good Enough?: Informed Consent Without Trained Interpreters. Society of General Internal Medicine 22: 598-605.

Sheikh, A., Halani, L., Bhopal, R., Netuveli, G., Partridge, M. R., Car, J., Griffiths, C. & Levy, M. (2009). Facilitating the Recruitment of Ethnic People into Research: Qualitative Case Study of South Asians and Asthma. PLoS Med 6 (10), e1000148.

Sudore, R. L., Landefeld, C. S., Williams, B. A., Barnes, D. El, Lindquist, K., Schillinger, D. (2006). Use of a Modified Informed Consent Process among Vulnerable Patients. J. Gen Intern Med 21:867-873.

Verastegui, E. L. (2006). Consenting of the Vulnerable: The Informed Consent Procedure in Advanced Cancer Patients in Mexico. BMC Medical Ethics 7:13. Accessed on August 17, 2010 from: http://www.biomedcentral.com/1472-6939/7/13.

White, D.B., Koehly, L.M., Omogbehin, A. & McBride, C.M. (2010). African-Americans’ responses to genetic explanations of lung cancer disparities and their willingness to participate in clinical genetics research. Genetics in Medicine, Vol. 12, No. 8, p. 496-502.

Zahedi, F. & Larijani, B. (2008). National bioethical legislation and guidelines for biomedical research in the Islamic Republic of Iran. Bulletin of the World Health Organization Vol. 86, No. 8, August.

Zion, D., Gillam, L., Loff, B. (2000). The Declaration of Helsinki, CIOMS and the ethics of research on vulnerable populations. Nature Medicine, 6(6):615-617.

 

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