Is it feasible to assess self-reported quality of life in individuals who are deaf and have intellectual disabilities?

Johannes Fellinger,Maria Fellinger,William Joseph Barbaresi,Katharina Schossleitner,Joachim Gerich,Daniel Holzinger,Magdalena Dall

doi:10.1007/s00127-020-01957-y

Abstract

PurposeThere 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.MethodsBased 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 (t1 and t2), 6 months apart. The Stark QOL, an established picture-based questionnaire, was also obtained at t2 and three Proxy ratings of QOL (from caregivers) were conducted for each participant at t1.ResultsSelf-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.ConclusionReliable 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.

Highlights

Since the publication of the Convention on the Rights of Persons with Disabilities [1], quality of life has proved to be a useful construct to drive progress towards equity, empowerment, and self-determination [2].obtaining information on Quality of Life directly from people with intellectual disabilities (ID) has been shown to be challenging
We identified a subgroup of participants with good comprehension (22–24 points, maximum of two questions rated as uncertain) to evaluate the instrument in persons deemed capable of understanding the EUROHIS-Quality of Life (QOL) ESL items
Complete data at both time points are available for 41 individuals (67% of total sample), 25 of whom (41% of total sample) were in the subgroup of those with good comprehension

Summary

Introduction

Since the publication of the Convention on the Rights of Persons with Disabilities [1], quality of life has proved to be a useful construct to drive progress towards equity, empowerment, and self-determination [2]. Obtaining information on Quality of Life directly from people with intellectual disabilities (ID) has been shown to be challenging. There is consensus that individuals with ID should be directly involved in the measurement of their QOL [8,9,10]. For this purpose, strategies such as simplifying questions and response options and the use of supportive visuals are required [11]. It is assumed that close relatives or caregivers can provide information that is comparable to

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