Resources/Referral/Follow Up

Cultural Competence

  • Self-assess for bias, countertransference, and stereotyping when working with consanguineous clients, individuals with low health literacy, and/or those living in poverty.

  • Approach all pedigree drawing tasks as routine, no matter how complex.

  • Respect consanguinity as a preferred choice in some cultures.

  • Explore the patient’s lay understanding of genetics, illness, inheritance and risk.

  • Listen for concerns expressed by community leaders and group members about research.

  • Engage community members in designing and implementing research.

  • Clearly define the study’s benefits to the community and the participants.

  • Use familiar and accessible community settings for study recruitment and implementation.

  • Consider providing incentives to compensate research participants for time and inconvenience.

  • Allow ample time for client decision making by allowing for return visits.

  • Write all patient materials, including informed consent forms, using principles of health literacy regarding the content, wording, layout, and organization. Evaluate all developed materials.

  • Translate informed consent forms into the participants’ target languages.

  • Use culturally and linguistically appropriate multi-media resources to supplement verbal and written explanations of the research study and the purpose of informed consent. Modify informed consent procedures to ensure patient understanding by using an individualized iterative review process and teaching to goal.

  • Incorporate teach-back into study consent forms to assess true client understanding.

  • When appropriate, report research results to participants and the community.

 

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