The long-term concerns post cochlear implantation as experienced by parents/caregivers of prelingually deaf children between the ages of 3 and 5 years in Gauteng Province, South Africa (original) (raw)

2016, South African Journal of Child Health

Studies on cochlear implantation (CI) have mostly highlighted the rollercoaster emotions experienced by families when a diagnosis of a hearing impairment is made. [1] The experiences of caregivers post CI have largely been neglected. For this article, the term caregiver refers to the natural parents or any family members who may assume the role of caring for a child who may not be their biological child. [2] In South Africa (SA) many children are being raised by grandparents mostly due to divorce, substance abuse, child abuse/neglect, HIV/AIDS, unemployment or death. [3,4] Furthermore, SA is a developing country characterised by high rates of poverty, unemployment, poor access to healthcare facilities and a high burden of disease. [5] There are also discrepancies in gender equality where women, often grandparents, are the ones who assume the caregiver role, [6] and in most cases, these grandparents are above the age of employment, thereby relying on government's pension grant for income. [3] Consequently, caregivers inherit the 'caregiver burden' , [7] described as the 'consequences of the activities involved in providing necessary direct care to a relative or friend that result in observable and perceived costs to the caregiver'. [7] In this case the caregiver burden is associated with raising a child with cochlear implants. Background Globally, 6 in 1 000 babies are born with a hearing impairment. [8] This affects language acquisition, since language development relies heavily on hearing. [9] Unless hearing impairment is identified and managed early, a child with a hearing impairment may miss an opportunity to develop spoken language. [9] Although SA is a developing country with access to developed world technology, [5] the public healthcare sector is marred by poor service delivery, and this affects the early detection and management of hearing impairments. [5] While rehabilitative services are essential, they are not a high priority when compared with life-threatening diseases such as tuberculosis (TB) or HIV/AIDS. [10] Cochlear implants are highly recommended in children with severe-to-profound sensorineural loss, [11] and who meet the candidacy criteria as discussed by Gray et al. [12] However, cochlear implants are costly. Kerr et al. [10] found that in the first 10 years of implantation, the average estimated cost for a paediatric CI was ZAR455 225. This figure may have since increased, affecting families with children who are fitted with cochlear implants. The CI process is also lengthy and emotionally draining. According to Luterman, [13] having a child with a hearing impairment creates stress within the family owing to continuous decisions such as suitable schools and the mode of communication for the family. There are ~10 schools in Gauteng Province, SA, that cater for children with hearing impairments (Peel EL. Inclusive Practice in South Africa. A Deaf Education Perspective. 2004: unpublished). The mode of communication offered and the proximity of the school may cause a concern for parents. Parents may enrol children at boarding schools or alternatively choose a local mainstream school or a school for learners with special educational needs. These often fail to cater for a child with cochlear implants. Methods A purposive sampling strategy was used to recruit three biological mothers and two caregivers. Parents/caregivers of children who were prelingually deafened between the ages of 3 and 5 years, fitted with cochlear implants and currently attending paediatric aural rehabilitation (AR), were recruited (Table 1). Background. Cochlear implantation aims to provide an effective means of spoken communication for prelingually deaf children. However, studies in this field are mostly clinically orientated, with little focus on the experiences and long-term concerns of families post cochlear implantation (CI). Objective. To describe the long-term concerns post CI as experienced by parents/caregivers of prelingually deaf children between the ages of 3 and 5 years, and to determine the role of support groups with regard to effective intervention and coping post CI. Methods. A phenomenological, non-experimental research design was conducted through semi-structured, indepth, one-on-one interviews with five parents/caregivers. Results. Caregivers reported concerns with changes in family support, financial difficulties, poor communication, and schooling and vocational prospects for their children. Conclusion. The findings of this study highlight a need for continued support for parents and families with children who have been fitted with cochlear implants. This should be through the use of a family systems perspective model that takes into account the impact on the quality of life of families with children who have a hearing loss or who are fitted with cochlear implants. There is a need for a contextualised longitudinal study where, based on previous observations and experiences, parents/caregivers are reminded about the continual long-term expenses associated with CI. This includes maintenance costs, hospital visits and school placement when the children reach school-going age.