Parents’ perspectives on the dilemmas with intervention for infants with auditory neuropathy spectrum disorder: A qualitative study

Abstract

Objective: This paper explores parental experiences of choices surrounding auditory management and language and communication development for infants and children with auditory neuropathy spectrum disorder (ANSD) in the light of the heterogeneity of condition, a poor evidence base for best outcomes in relation to management options, and the scarcity of data rooted in parent and family experience. Design: Qualitative narrative study. Study sample: Twenty-five parents of 21 children (aged four months to six years) identified with ANSD through the newborn hearing screening programme. Results: Families identify barriers to early management due to conflicting expert opinions and ANSD-specific challenges with diagnosis and prognosis in infants, and share their accounts on their own evaluations of intervention benefit in their children. Conclusions: The results are of relevance to the clinicians and other professionals involved in early intervention, management, and support of infants with ANSD.

Key Words::

• Auditory neuropathy spectrum disorder
• management

Acknowledgements

The authors thank the families who participated in the study, the teachers of the deaf for supporting the study and help with recruiting families. This work was funded by a grant from the National Deaf Children's Society.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.