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What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries

Lookup NU author(s): Emerita Professor Helen McConachie, David Mason, Deborah Garland, Professor Jeremy Parr, Emerita Professor Jacqueline Rodgers

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This is the authors' accepted manuscript of an article that has been published in its final definitive form by Mary Ann Liebert , 2019.

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Abstract

Relevant and valid measurement is crucial in determining whether interventions and supports have improved the quality of life (QoL) of autistic people. However, it is possible that researchers' and services' use of general population QoL tools may overlook issues of specific importance. To advance methodology, we conducted a preliminary exploration of the need and basis for cross-cultural development of additional autism-specific QoL questions. Nine consultation groups with autistic adults (n = 38) were held in Argentina, Australia, Singapore, and the United Kingdom to examine the items of the World Health Organization QoL questionnaire (WHOQOL-BREF) and the WHOQOL Disabilities add-on module. Each group discussion was transcribed and analyzed thematically to identify missing issues and nuances of particular significance to autistic people. Themes seen as important and particularly relevant to QoL of autistic people included a positive autistic identity, other people's lack of understanding of autism, sensory issues, and autistic people's contributions to society. There were notable similarities across sites indicating that creation of cross-cultural autism-specific items is likely to be possible; the themes identified could inform the focus of items for measurement of QoL. This project represents an initial step toward fuller international consultation, and subsequent development of an autism-specific module for addition to the core WHOQOL model.

Publication metadata

Author(s): McConachie H, Wilson C, Mason D, Garland D, Parr J, Rattazzi A, Rodgers J, Skevington S, Uljarevic M, Magiati I

Publication type: Article

Publication status: Published

Journal: Autism in Adulthood

Year: 2019

Volume: 2

Issue: 1

Pages: 4-12

Print publication date: 11/03/2020

Online publication date: 09/10/2019

Acceptance date: 13/08/2019

Date deposited: 15/08/2019

ISSN (print): 2573-9581

Publisher: Mary Ann Liebert

URL: https://doi.org/10.1089/aut.2019.0008

DOI: 10.1089/aut.2019.0008

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