Informed choice and unbiased support: Parents’ experiences of decision-making in paediatric deafness

Abstract

A body of research highlights parents' decision-making and the contested nature of deafness as an issue in clinical practices. Drawing on sixteen months of ethnographic fieldwork from 2017 to 2018 in an Australian city a ‘follow the baby’ approach was undertaken in a multi-sited setting. Forty-one parents and twenty-seven health and education professionals were interviewed. Informed choice, framed in this context as ‘unbiased’, aims to empower parents to make choices about technologies, communication options and early intervention. While many parents said they knew what they wanted for their child they also reported that making decisions was complex, uncertain, and confusing. Conflicting ideas about what was ‘best’ for a deaf child, clinicians' power, and other stakeholders' vested interests, shaped parents' experiences of making decisions. This article captures the complexities and ambiguities of parents' decision-making and illustrates the ways that informed choice worked to sometimes confuse and perplex parents, which may be counterproductive to good care practices. We probe whether complexities and structural barriers in childhood deafness might complicate parents' experiences and their satisfaction with services. Greater transparency in paediatric deafness and increased collaboration and understanding between parents and clinicians is recommended as a support to parents' decision making.

Keywords

• Parents' decisions
• Childhood deafness
• Informed choice
• Best practice
• Early intervention
• Medical anthropology