In 2006 Sue Archbold undertook a questionnaire survey of parents, cochlear implant users and professionals working with implanted patients in the UK and Europe. This survey was funded by Cochlear Europe.
A questionnaire was designed with parents and professionals at The Ear Foundation with the aim of carrying out a brief survey of the needs of cochlear implant users in Europe, how these needs are currently being met and what may be needed in the future. The survey aimed to uncover areas for further exploration and to find out whether there were differing issues for children and adult users, and whether the issues are the same for professionals working in implant centres and those in the community.
The study revealed that cochlear implant programmes continue to be recognised as the centres of expertise with the responsibility for training others. Over 90% of parents wanted more courses to be run by cochlear implant centres with only 30% wanting courses locally. Community professionals were more evenly divided between wanting courses locally or at implant centres.
Almost all respondents wanted more training/information on habilitation/follow up and around 70% of people wanted more training/information on technical aspects and outcomes.
However there needs to be more transfer of skills to local professionals. Over 50% of respondents in the UK seemed to feel that more teacher training is required about cochlear implants and that local professionals need support with the technology.
The children are seen to need more intensive therapy and special education. Parents highlighted issues with speech and language therapy, but adults have access to far fewer post-implant habilitation services than children.
There was concern regarding long-term support and follow up for both children and adults, particularly technical backup. Respondents wanted more help with resources including interactive or downloadable activities to develop skills. There was also much concern about finance in the UK but less so in the rest of Europe.
Concerns were also expressed about services for adults including timely referral for implantation and pre-operative counselling.
This paper is currently being written for publication.
A follow up survey, looking at what families want and what they get from cochlear implant services in the UK is currently under way at the Ear Foundation, funded by the NDCS which will report early in 2009.