The development of a pre-implantation tool for rating the individualised information and support needs of parents of young cochlear implant candidates

Abstract

Cochlear implantation is a proven and accepted option for young children with profound hearing loss. Cochlear implantation requires a professional team which should inform, guide, support and collaborate with parents constantly throughout the process. Existing programs for children with hearing loss and their families are generally designed on the basis of what experts believe they should contain, rather than on what parents actually wish to receive, which may often lead to a mismatch between the professionals view and the parents’ views of parental needs. In order to ensure that parental needs are appropriately addressed it is imperative that professionals investigate and understand the individual needs and desires of the parents with whom they collaborate. This can be managed by carefully tailoring information to their individual needs and presenting information in an accessible format at the time it is most appropriate and digestible. The aim of this research study was to develop a pre-implantation tool to rate the individual support and information needs of parents of young cochlear implant candidates. Within the context of applied research, a qualitative descriptive intervention research design was used in the study. Ten parents of children with cochlear implants participated in a semi-structured interview to investigate their need for information and support during the pre-implantation phase of cochlear implantation. Their responses were analysed and compared to relevant literature in order to develop the pre-implantation rating tool for parents of cochlear implant candidates. The rating tool consists of ten areas for information and support. These areas are as follows: general, technical, surgery, social support, financial, communication options, education, outcomes, rehabilitation and parental role. Parents are able to rate which areas of information and support is important to them and what they would like to discuss with the professional involved. Parents are also encouraged to identify any area of information and support that is not included in the rating tool that they would want information on from the cochlear implant team. This rating tool was evaluated by eight speech-language pathologist/audiologist working in six cochlear implant programmes in South Africa to determine the value of the rating tool. Positive responses were given about the adaptability of the tool to identify individual needs for support and information and the tool would be useful to guide speech-language pathologist/audiologists to identify needs of parents that should initially be addressed. Respondents agreed that the rating tool provides an opportunity to express parent’s individual needs for information and support; that the tool correlates with a family centered approach and would be useful to include in cochlear implant programs. The majority of participants felt the rating tool possibly will be effective in identifying information and support needs of parents before cochlear implantation and respondents would be willing to implement the rating tool in their cochlear implant programme. The positive response from professionals working in the field of cochlear implantation validates the effectiveness of the rating tool. AFRIKAANS : Kogleêre inplantering is ‘n beproefde en aanvaarde opsie vir jong kinders met ‘n uitermatige gehoorverlies. Kogleêre inplanting vereis dat ‘n professionele span ouers deur die proses inlig, lei en ondersteun. Huidige programme vir kinders met gehoorverlies en hulle gesinne, is oor die algemeen gebaseer op grond van inligting wat volgens kundiges belangrik is om in te sluit. Hierdie programme is nie noodwendig gebaseer op inligting ouers graag wil ontvang nie. Dit kan lei tot ‘n verskil tussen die perspektief van professionele persone teenoor die van die ouer oor ouer- behoeftes aan inligting. Om te verseker dat ouers se behoeftes effektief aangespreek word, is dit noodsaaklik om dit te ondersoek en die individuele behoeftes van ouers te verstaan. Dit kan gedoen word deur inligting aan te pas volgens die individuele behoeftes van ouers en die inligting te verskaf in ‘n toeganklike wyse op ‘n gepaste tyd wanneer dit geskik is en die ouer die inligting kan prosesseer. Die doel van hierdie navorsing studie was om ‘n pre-inplantering instrument te ontwikkel om die individuele behoeftes aan inligting en ondersteuning van ouers van jong kogleêre inplantings kandidate te bepaal. Binne die konteks van toegepaste navorsing is ‘n kwalitatiewe beskrywings intervensie navorsingsontwerp gebruik. Tien ouers van kinders met kogleêre inplantings het deelgeneem aan ‘n semi-gestruktureerde onderhoud. Die onderhoud het ouers se behoefte aan inligting en ondersteuning tydens die pre-inplanterings fase van kogleêre inplantasie ondersoek. Die resultate is geanaliseer en vergelyk met relevante literatuur om sodoende die pre-inplantering bepaling instrument vir ouers van kogleêre kandidate te ontwerp. Die instrument bestaan uit tien areas van inligting en ondersteuning. Hierdie areas is as volg: algemeen, tegnies, chirurgie, sosiale ondersteuning, finansieel, kommunikasie opsies, onderrig, rehabilitasie en ouer rol. Ouers kan bepaal watter areas van inligting en ondersteuning vir hulle belangrik is en wat hulle graag wil bespreek met die professionele persone betrokke by die kogleêre inplanting proses. Ouers word ook aangemoedig om enige area van inligting en ondersteuning te identifiseer wat moontlik nie ingesluit is in die instrument nie, maar wat hulle graag met die kogleêre span wil bespreek. Agt spraak-taal patoloë/oudioloë van ses kogleêre inplantings programme in Suid-Afrika het die instrument geëvalueer om die waarde daarvan te bepaal. Positiewe insette is gegee oor die aanpasbaarheid van die instrument om die individuele behoeftes vir inligting en ondersteuning te bepaal; dat die instrument betekenisvol is om die spraak-taal patoloog/oudioloog te lei om die behoeftes van ouers te identifiseer en aan te spreek; dat die instrument ooreenstem met ‘n familie- gesentreede benadering en dat die instrument effektief ingesluit kan word in kogleêre inplantings programme. Die meeste deelnemers het aangedui dat die instrument effektief sal wees in die identifisering van inligting en ondersteunings behoeftes van ouers voor ‘n kogleêre inplanting. Deelnemers het aangedui dat hulle bereid sal wees om die instrument te implementeer in hulle kogleêre inplantingsprogram. Die positiewe respons van spraak-taal patoloë en oudioloë dui op die geldigheid en effektiwiteit van die instrument.