Is it feasible to assess self-reported quality of life in individuals who are deaf and have intellectual disabilities?
Johannes Fellinger, Magdalena Dall, Joachim Gerich, Maria Fellinger, Katharina Schossleitner, William J. Barbaresi, Daniel Holzinger
Abstract
Abstract Purpose There is consensus that Quality of Life (QOL) should be obtained through self-reports from people with intellectual Disability (ID). Thus far, there have been no attempts to collect self-reported QOL from people who are deaf and have ID. Methods Based on an established short measure for QOL (EUROHIS-QOL), an adapted easy-to-understand sign language interview was developed and applied in a population ( n = 61) with severe-to-profound hearing loss and mild-to-profound ID. Self-reports were conducted at two time points ( t 1 and t 2 ), 6 months apart. The Stark QOL, an established picture-based questionnaire, was also obtained at t 2 and three Proxy ratings of QOL (from caregivers) were conducted for each participant at t 1 . Results Self-reported QOL was successfully administered at both time points for 44 individuals with mild and moderate ID (IQ reference age between 3.3 and 11.8 years). The self-reports showed sufficient test–retest reliability and significant correlations with the Stark QOL. As anticipated, self-reported QOL was higher than proxy-reported QOL. Test–retest reliability and internal consistency were good for self-reported QOL. Conclusion Reliable and valid self-reports of QOL can be obtained from deaf adults with mild-moderate ID using standard inventories adapted to the linguistic and cognitive level of these individuals.