What should be said and what should not be said? − Perception of parents and caregivers of individuals with Down Syndrome in Hong Kong on sensitive language in Cantonese used in healthcare setting

Abstract

BACKGROUND: Every word that health professionals said may be heavily valued, making it particularly imperative for us to select word choices appropriately. To our knowledge, there is limited medical linguistics study in Cantonese to date. Down syndrome (DS) is a common genetic and parents of individuals with DS have extensive experience in interacting with health professionals. This current study aims to explore the perception of parents and caregivers of individuals of DS on the language used in healthcare settings in Hong Kong. METHOD: We recruited parents/caregivers of individuals with DS through Hong Kong Down Syndrome Association (HKDSA). Parents/caregivers were invited to complete a questionnaire with words adapted from a study on sensitive language used in genetics (Hodgson et al., 2005). The questionnaire was reviewed critically by the HKDSA scientific committee. Participants were asked to rate each words/phrases as "offensive"/"not offensive", offer alternatives to the words listed and give other words/phrases based on their past experience in healthcare setting which they found as offensive. RESULT: We have recruited 116 parents / caregivers of individuals with DS (age 5-55). Most participants rated " become a burden" (82%), " useless" (77%), " hopeless" (77%) and " abnormal" (76%) as "offensive". Some participants suggested alternative words, such as " special" instead of " become a burden" and " abnormal" respectively. Some participants also gave their other perceived offensive words, such as " Mongols". On the other hand, the least rated "offensive" words are " Chromosome deviant" (35%), " growth delay" (35%) and " handicapped person" (34%). CONCLUSION: Overall, the findings of this study showed that words that were mostly colloquial, dysphemism, or slang commonly used in vernacular speech were rated as offensive by most participants. On the other hand, literary terms were more acceptable. The findings reflect that participants have sensitive impression on the language used in medical setting. This has implication in the practice of genetic counseling. Health professionals should be aware of their choice of language in order to provide support to parents and caregivers of individuals with special needs.