Clients of the Pretoria Cochlear Implant Programme : characteristics and perceived outcomes of children and their families

Abstract

In order to provide evidence demonstrating the efficacy of cochlear implantation in the children enrolled in the Pretoria Cochlear Implant Programme (PCIP), an in-depth analysis of the numerous variables involved in determining each individual child’s success with his/her cochlear implant needs to be undertaken. As the PCIP has been operating for over a decade, a standardised database that includes the variables identified by similar cochlear implant programmes world-wide as being related to outcomes of children with cochlear implants and their families, has to be assembled. As the PCIP functions partly as a paediatric cochlear implant programme, an Early Communication Intervention (ECI) approach with the emphasis on the family unit is of critical importance. To address this need, a comprehensive questionnaire was used in a cross sectional study combining qualitative, and predominantly quantitative methods. The aim was to determine the perceptions of parents/caregivers of children with cochlear implants in the PCIP of the children’s outcomes. The questionnaire was further used to gather relevant data pertaining to children and their families’ biographical, medical, environmental, audiological, linguistic and educational histories and current functioning. A total of 45 participants, all mothers of children with cochlear implants, returned questionnaires. Results indicated that several key factors played a role in determining a positive outcome in the children’s audiological, linguistic, social and educational functioning leading to placement in an inclusive educational setting. These included an early age at diagnosis and prompt fitting of hearing aids and subsequent cochlear implantation, the absence of prenatal and perinatal complications including feeding difficulties, a higher level of maternal education, achievement of developmental milestones within normal age norms, the use of an FM system in the primary school phase, access to ECI, the presence of an older sibling to act as a language model, the absence of birth trauma and congenital rubella syndrome as cause of hearing loss, and later (acquired) onset of hearing loss. Children whose cause of hearing loss was non-syndromic and hereditary or unknown, were more likely to have positive outcomes. The clinical implications for the PCIP were synthesised and presented as a developmental systems model, providing guidelines for the entire process from referral to the cochlear implant programme to exiting of the system. The urgency of the need for a universal newborn or infant hearing screening programme as well as reliable systems of early referral to cochlear implant programmes, emerged strongly in the recommendations of the study.