PIH54 HEALTH RELATED QUALITY OF LIFE OF PRE-ADOLESCENT DEAF CHILDREN WITH COCHLEAR IMPLANTS: A CONCEPTUAL DISEASE MODEL

Abstract

To develop a conceptual disease model of health-related quality of life (HRQoL) in deaf children between the ages of 8 to 12 using cochlear implants (CIs). A targeted literature review was carried out to review research conducted in deaf children with CIs detailing concepts relevant to their HRQoL. The literature review informed two concept elicitation studies investigating HRQoL in the patient population. The interview guides focused on researching HRQoL concepts relevant to the patient experience of being deaf with CIs. The first study involved qualitative interviews conducted over the telephone with 7 professionals that have direct experience in working with the population which included: 2 clinical audiologists, 2 clinical psychologists, 1 speech therapist, 1 consultant surgeon and 1 principal teacher of the deaf. The second study involved face to face qualitative interviews with 15 deaf children with CIs between the ages of 8 and 12 years old. All interviews were conducted and transcribed verbatim and coded using thematic analysis being aided by QSR Nvivo 10 software. The analysis used an inductive bottom-up approach with the data driving analysis. The concepts researched in the literature review and the candidate themes found in analysis from the two studies were used to develop conceptual disease model domains that comprise HRQoL in deaf children with CIs. The interviews showed domains reported by both a wide range of professional and the children themselves. The final domains include: emotions, social relationships, school life, hearing functioning, and device limitations. Domains that were shown to be candidate themes but were not relevant included impact of family dynamic and identity of being a CI user. The conceptual HRQoL model presented has the potential to be used for development of a patient reported outcome measure assessing HRQoL in deaf children with CIs.