Awareness of genetic counselling services amongst allied-healthcare professionals

Thom, Jamey
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Due to the lack of awareness of what genetic counselling entails, its availability and benefit, many patients are not referred for genetic counselling and genetic counsellors are underutilised. Individuals with genetic disorders present with a variety of symptoms and are frequently referred to allied-healthcare professionals for management. Allied-healthcare professionals are in a unique position to identify appropriate patients and refer them to genetic counselling. This study aimed to determine if allied-healthcare professionals, including physiotherapists, occupational therapists and speech and language therapists, were aware of genetic counselling services, had referred patients to these services and to identify barriers and facilitators to referral. This information allowed recommendations to be made to increase the number of patients referred by allied-healthcare professionals to genetic services. A paper-copy questionnaire that was adapted from Hayflick et al.’s study was administered to allied-healthcare professionals working at one of three state hospitals in Johannesburg. The questionnaire consisted of demographic and multiple choice questions. The multiple choice questions aimed to assess the allied-healthcare professional’s knowledge of genetic services, whether they understood the role of genetic counselling and if they were interested in furthering their genetics education. 57 questionnaires were completed and their data analysed. Results indicated that 29/57, 50.9% knew that genetic counselling services were available. Of those that were aware of the services, 15/29, 51.7% had referred patients to these services in the last year. Barriers to referral included misconceptions about the role of genetic counsellors, insufficient knowledge of which patients would benefit from genetic counselling and being unable to get appropriate information from the genetic clinic for patient referral. Facilitators identified included allied-healthcare professionals recognising the benefit of genetic counselling and wanting to increase their knowledge in genetics. Therefore, genetics education of allied-healthcare professionals and improved information regarding the referral procedure may improve the number of patients referred to genetic counselling.
A research report (in the format of a “submissible” paper) submitted to the Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, in partial fulfilment of the requirements for the degree of Master of Science in Medicine (Genetic Counselling), 2020