2 research outputs found

    Genetic Counselor Tailoring of Information about Genetic Conditions to Children and Adolescents

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    There is growing literature demonstrating the importance of effective and tailored healthcare communication with children and adolescents. This study aimed to understand how genetic counselors tailor their language and informational content when communicating genetic information to children and adolescents. Forty genetic counselors across specialties submitted audio recordings of themselves explaining a genetic condition of their choice to hypothetical patients of three different ages (5 years, 9 years, and 15 years old). Participants also filled out a survey assessing their attitudes and practices toward delivering genetic information to children and adolescents at differing developmental stages. Genetic explanations were assessed for language complexity and informational content and compared across the hypothetical patients’ age. Language complexity as measured by Flesch reading ease, Flesh-Kincaid grade level, words per sentence, word count, characters per word, and use of technical genetic language significantly increased with the age of the patient. Content analysis of the genetic explanations generated 16 themes. Of these themes, for all patient ages a majority of participants discussed the name of the genetic diagnosis, described symptoms/features, and explained medical management. Three content themes were explained significantly more frequently with increasing age of the patient, including explaining DNA and genes/chromosomes, disclosing the name of the genetic diagnosis, and explaining inheritance and recurrence risk. These results indicate that participating genetic counselors modified the language complexity and content of their genetic explanations to the developmental stage of their hypothetical patient. Genetic counselors surveyed generally expressed support for directly communicating with patients who are children/adolescents and valued tailoring language and content of explanations to the patient’s level of development. Despite this, some participants reported challenges in knowing how to communicate effectively with children/adolescents, having the engagement and attention of young patients, and having parents’/caregivers’ permission to speak directly with their children. Results of this study will have implications for future research that may support training interventions, guideline formation, funding for professional child development support, and/or self-awareness for genetic counselors
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