Negotiating uncertainty: Parental decision making about mild and unilateral deafness in infants and young children.

Abstract

There are a range of clinical uncertainties for managing mild and unilateral deafness in infants, such as whether hearing interventions are effective or even required. This study aimed to explore parental experiences of decision making for their pre-school aged children with mild or unilateral deafness identified through newborn hearing screening. Grounded theory methodology was used to develop a theory of parental decision making. Semi-structured interviews were carried out with seventeen parents of children with mild and unilateral deafness age 5 months to 4 years old. Parents made decisions about use or non-use of hearing interventions. Negotiating uncertainty was the core category that explained the decision making process. Parental skills and values, trust in professionals, and external constraints enhanced or mitigated uncertainty. The process of negotiating uncertainty involved learning to notice any changes in their child's behaviours which could reinforce or cast doubt on medical advice. Parents engaged in trade-off actions, such as comparing their perceptions of their child's hearing with evidence provided by professionals. These actions led to specific decisions regarding ways of managing their child's deafness, whether they preferred to 'maximise hearing' or 'wait and see'. Parents of infants and young children with mild and unilateral deafness often experience significant uncertainty, particularly in the early stages following diagnosis. The parent-professional relationship is important in supporting families through uncertainty and decision making. Enhancing professionals' ability to communicate effectively about uncertainty could support early parental decision making about their child's deafness.