Paediatric Cochlear Implant Assessment - Parental Experiences
Research type
Research Study
Full title
Parental Experiences of Cochlear Implant Assessment for their Child with Multiple Disabilities.
IRAS ID
136931
Contact name
Lindsey Edwards
Contact email
Research summary
Approximately 40% of deaf children have sensory, medical, physical, behavioural or emotional needs in addition to their deafness (Birman, Elliott and Gibson, 2012, Gallaudet Research Institute, 2010), and a small proportion of these have severe, multiple disabilities. Around 12 children are referred to the GOSH Cochlear Implant Programme each year who fall into this latter category. All children receive a comprehensive assessment of their suitability for cochlear implantation. This involves CT and MRI scans, a balance assessment, and multiple appointments with audiologists, speech and language therapists, clinical psychologists and a home visit from a teacher of the deaf.
Children with no disabilities in addition to their deafness typically require between 6 and 8 hospital visits/appointments, most of which occur during an intensive ’assessment week’. In contrast the children with multiple disabilities are usually very hard to test and require many more appointments/visits to obtain the necessary assessment results, sometimes as many as 16 visits over a period of several months.
Informal feedback from some parents of children with multiple disabilities is that the process of assessment can be very stressful and frustrating, and result in feelings of anger and distress, especially if ultimately the team’s decision is that an implant is not appropriate. Other parents have said that the process is positive in helping them to understand their child’s needs and inform decision about their management and care, even if the decision is ’no’.
This study will therefore use a qualitative methodology to explore the issues/factors that are important in influencing how parents experience the assessment process.
REC name
North of Scotland Research Ethics Committee 2
REC reference
13/NS/0131
Date of REC Opinion
24 Sep 2013
REC opinion
Favourable Opinion