Miss Nolene Chetty

Supervisors: Dr. Zandre Bruwer

Country of Origin: South Africa

Project Title: Returning Individual Genetic Results to Research Participants: Experiences of Stigma in South African Families with Neurodevelopmental Disorders

Project Description:
There is little research about the experiences of stigma in parents or caregivers of children suffering from a Neurodevelopmental Disorder (NDD) in a South African context. Likewise, the impact of genetic attribution on these experiences have not been extensively studied. To account for this, this study hopes to describe instances of stigma, how a positive genetic result may alter these experiences and the role of Genetic Counsellors in identifying, counselling and promoting adaptation to these potential psychosocial harms. This study will be conducted in the year 2023.

Abstract: In South Africa, there is little research about the experiences of stigma in parents or caregivers of children suffering from a Neurodevelopmental Disorder (NDD). Likewise, the impact of genetic attribution on these experiences have not been extensively studied. As a sub-study to the NeuroDev study, this research aims to explore the experiences of stigma in South African parents or caregivers of children with NDDs and how a positive genetic result alters these experiences. On this basis, this study further aims to ascertain the role of genetic counsellors in addressing instances of stigma in NDDs and genomics research. An interpretive phenomenological approach will be used in which semi-structured interviews will be conducted to obtain experience-rich data. The interviews will be audio-recorded, transcribed verbatim and analyzed using a thematic analysis flow. Consequently, this study hopes to describe instances of stigma, how a positive genetic result may alter these experiences and the role of Genetic Counsellors in identifying, counselling and promoting adaptation to these potential psychosocial harms.