Quality of Life of Persons with Profound Intellectual and Multiple Disabilities: A Narrative Literature Review of Concepts, Assessment Methods and Assessors

Autor/inn/en	Nieuwenhuijse, Appolonia M.; Willems, Dick L.; van Goudoever, Johannes B.; Echteld, Michael A.; Olsman, Erik
Titel	Quality of Life of Persons with Profound Intellectual and Multiple Disabilities: A Narrative Literature Review of Concepts, Assessment Methods and Assessors
Quelle	In: Journal of Intellectual & Developmental Disability, 44 (2019) 3, S.261-271 (11 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1366-8250
DOI	10.3109/13668250.2017.1388913
Schlagwörter	Quality of Life; Severe Intellectual Disability; Multiple Disabilities; Evaluation Methods; Caregivers; Observation + Suchen Sie Ihr Suchwort? Lebensqualität; Multiple disability; Mehrfachbehinderung; Caregiver; Carer; Betreuungsperson; Pfleger; Beobachtung
Abstract	Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD). Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the included studies were then analysed thematically. Results: Twenty-one articles were included in the analysis. Multidimensional concepts of QoL consisting of both subjective and objective components were found, although the articles used different distinctions for each. QoL was assessed by behavioural observations or interviews/questionnaires. Family members, primary caregivers and more distant observers (or a combination of these three) determined QoL. Triangulation of assessors and methodological pluralism were used. Conclusions: This review highlighted several components of QoL in persons with PIMD, as well as challenges in researching the QoL of persons who are not able to express themselves verbally. The distinction between objective and subjective QoL was difficult to clarify, with interpretation being both inevitable and necessary. Although triangulation is seen to be good practice in QoL assessment, the role of proxies in assessing the QoL of persons with PIMD needs further investigation. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2020/1/01