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Parents' perspectives on the dilemmas with intervention for infants with auditory neuropathy spectrum disorder: A
Kai Uus1, Alys Young, Marianne Day
1* Audiology & Deafness Research Group, School of Psychological Sciences, Faculty of Medical & Human Sciences, the University of Manchester, Manchester Academic Health Sciences Centre (MAHSC) , Manchester , UK.
Insights
Parents navigating auditory neuropathy spectrum disorder (ANSD) face challenges with early management due to conflicting advice and diagnostic uncertainty. Their experiences highlight the need for better support for families and professionals involved in intervention.
Area of Science:
- Pediatric audiology
- Developmental pediatrics
- Family-centered care
Background:
- Auditory Neuropathy Spectrum Disorder (ANSD) presents unique challenges due to its heterogeneous nature.
- Limited evidence exists regarding optimal management strategies and outcomes for children with ANSD.
- There is a scarcity of research focusing on the lived experiences of parents managing ANSD.
Purpose of the Study:
- To explore parental experiences with auditory management choices for infants and children with ANSD.
- To understand parental perspectives on language and communication development in the context of ANSD.
- To provide insights into family experiences given the condition's heterogeneity and evidence gaps.
Main Methods:
- A qualitative narrative study design was employed.
- Twenty-five parents of 21 children diagnosed with ANSD participated.
- Children's ages ranged from four months to six years, identified via newborn hearing screening.
Main Results:
- Families encountered barriers to early management, including conflicting professional opinions.
- Infants with ANSD faced diagnostic and prognostic challenges, impacting management decisions.
- Parents shared their evaluations of intervention benefits based on their child's progress.
Conclusions:
- Findings are crucial for clinicians and professionals involved in early intervention for ANSD.
- Understanding parental experiences can inform more effective support strategies.
- Highlights the need for cohesive guidance in managing ANSD and supporting affected families.
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.
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