Balancing Sound Decisions: Exploring Informed Consent Practices and Perspectives in Newborn Hearing Screening Programs.

Abstract

Purpose: This study aimed to explore the informed consent practices used by audiologists in South African newborn hearing screening (NHS) programs and to gather perspectives from professionals involved in these programs both locally and internationally.

Method: A sequential, explanatory mixed-methods design was employed. Phase 1 comprised a survey with audiologists who were recruited via professional associations and social media platforms. Phase 2 comprised two focus group interviews with NHS program experts who provided further insights into the reported informed consent practices.

Results: Although practices varied between private and public health care sectors, there was general agreement among participants on the best timing and format for delivering information, the timing of the consent process, and the consistency of consent procedures for both high-risk and well babies. However, the information provided to these two groups of babies varied. The focus group interviews highlighted subtle details of obtaining true informed consent, distinguishing it from implied consent and informed choice, emphasizing its complexity and significance for clinical practice. The importance of providing accessible, culturally sensitive information to ensure parental autonomy and informed decision making was also highlighted by the findings.

Conclusions: Findings highlight the critical role of informed consent in NHS. Effective informed consent in NHS programs requires timely, clear, and culturally appropriate communication. This study underscores the need for standardized practices in informed consent to enhance parental understanding and support for NHS programs in South Africa, and proposes strategies to improve informed consent processes, particularly in contexts where universal NHS is not mandated.