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

  • PDF / 624,940 Bytes
  • 10 Pages / 595.276 x 790.866 pts Page_size
  • 51 Downloads / 143 Views

DOWNLOAD

REPORT


ORIGINAL PAPER

Is it feasible to assess self‑reported quality of life in individuals who are deaf and have intellectual disabilities? Johannes Fellinger1,2,3   · Magdalena Dall1,2 · Joachim Gerich4 · Maria Fellinger2 · Katharina Schossleitner1,2 · William Joseph Barbaresi5 · Daniel Holzinger1,2,6 Received: 3 March 2020 / Accepted: 1 September 2020 © The Author(s) 2020

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 (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. 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 selfreported 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. Keywords  Quality of life · Intellectual disability · Deafness · Self-report · Sign language

Introduction

* Johannes Fellinger [email protected] 1



Research Institute for Developmental Medicine, Johannes Kepler University Linz, Linz, Austria

2



Konventhospital Barmherzige Brüder, Institut für Sinnes- und Sprachneurologie, Linz, Austria

3

Division of Social Psychiatry, Medical University of Vienna, Vienna, Austria

4

Department of Sociology, Johannes Kepler University Linz, Linz, Austria

5

Division of Developmental Medicine, Department of Pediatrics, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA

6

Institute of Linguistics, Karl-Franzens University Graz, Graz, Austria





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]. However, obtaining information on Quality of Life directly from people with intellectual disabilities (ID) has been shown to be challenging. Prior studies highlight barriers including language and cognitive function, response bias, and theory of mind [3–6] that are even more relevant in persons who are deaf and have ID [7]. There is consensus that individuals with ID should be d