A qualitative exploration of the assessment process to cochlear implantation for children with hearing loss

Abstract

OBJECTIVE: To explore the process of paediatric cochlear implant assessment, from referral to implantation, from the perspective of parents, cochlear implant professionals, and through observations of clinics. DESIGN: Qualitative approach, using grounded theory methodology. STUDY SAMPLE: Twelve families with children under 5 years with permanent hearing loss referred for a cochlear implant or received an implant in the past year, and six professionals who refer or assess children for cochlear implants. Data collection involved interviews and ethnographic observations of assessment clinics. RESULTS: The core theme derived from interview and observation data related to the work of the cochlear implant assessment for families. The relationship between the work generated by the assessment process and capacity of parents to do the work provides a model to examine access to early implantation, consistent with the Burden of Treatment theory. We identified variation in terms of workload, relating to factors such as a child’s additional needs or number of appointments required, and in terms of capacity, relating to factors such as social circumstances or health literacy. Social, peer and professional support and information helped families manage the workload. CONCLUSIONS: Findings have implications for delivery of paediatric cochlear implant services.