Exploring how parents of children with unilateral hearing loss make habilitation decisions: a qualitative study

Abstract

Objective: This study sought to explore the decision making needs of parents managing the hearing and communication needs of children with unilateral hearing loss.

Design: An inductive, qualitative method was used. The data were analysed using a constant comparative approach, consistent with Grounded Theory method.

Study sample: Twenty one families participated in interviews yielding data on twenty two children. Each of these families had at least one child with unilateral hearing loss. The age range of the children varied from four months to sixteen years old. All parents were English speaking and received care from National Health Service Audiology departments across the United Kingdom.

Results: Parents valued professionals' opinions, but information provision was inconsistent. As their children mature, parents increasingly valued their child's input. Parent-child discussions focussed on how different management strategies fit their child's preferences. Parents were proactive in obtaining professional advice, and integrating this with their own iterative assessment of their child's performance.

Conclusions: Decision making is an iterative process. Parents make nuanced decisions which aim to preserve a sense of what is normal for them. Clinicians need to recognise the parental view, including where it may contrast with a medicalised or clinical view.

Keywords: paediatric; parent; shared decision making; unilateral hearing loss.