A questionnaire-based analysis of parental perspectives on pediatric cochlear implant (CI) re/habilitation services: a pilot study from a developing CI service in India.

OBJECTIVE: To study parental perspectives on re/habilitation services offered for pediatric cochlear implant (CI) users at a non-profit organization in India.

METHODOLOGY: A non-standardized questionnaire comprising 46 items was created to understand perspectives of parents of pediatric CI users. Questions were designed to examine re/habilitation services from the angles of service delivery, parental stress levels, reasons for delay in obtaining services, sources of emotional support, concerns, and fears during each stage starting from diagnosis of hearing loss to CI surgery, re/habilitation services and parents' views of their children post-CI. The questionnaire was posed to 30 parents and responses were recorded and coded.

RESULTS AND DISCUSSION: Qualitative and quantitative analyses based on parents' responses identified several factors that significantly influenced parental perspectives during each stage. The major factors delaying the decision to go for CI included a fear of surgery, lack of funds for CI and the subsequent re/habilitation process, and limited knowledge. Key concerns were the child's academic performance and social acceptance. Familial support played an important role during each stage. A significant reduction in the parental stress levels was observed following CI surgery. Parents indicated that local support for therapy, financial assistance and better guidance at each stage would substantially help in lowering stress levels.

CONCLUSIONS: The parental perspectives analyzed in this study can be utilized towards improving the quality of service delivery in terms of parental satisfaction and outcomes post-CI. Efforts should be taken to improve parental awareness, funding options, and access to re/habilitation services and social networks connecting similar parents.