Perspectives on quality of life of people with intellectual disabilities: the interpretation of discrepancies between clients and caregivers.
Large discrepancies have sometimes been found between the quality of life (QOL) experienced by clients with intellectual disabilities and their QOL as described by their caregivers. Olsen and Schober (Soc Indi Res 1993; 28: 173-193) may have provided a framework useful to conceptualize such discrepancies. They suggested that lack of concordance between objective circumstances (i.e. poverty) and perceived QOL must not be treated as measurement noise, but as a source of information. They speculated on the psychological processes that underly and explain this lack of concordance; particularly processes that try to deal with the stress induced by cognitive dissonance and learned helplessness. In this study low to moderate agreement was found between caregivers judgement of QOL of individual clients and clients' own perception of QOL. In some areas and for some clients the discrepancies indicated dissonance (caregivers are satisfied, clients are not) and in other areas and for other clients adaptation (clients are satisfied, caregivers are not). There were systematic differences between clients falling in these groups with respect to their personal characteristics and with respect to factual conditions of care. These outcomes are interpreted with respect to Olson and Schober's contentions regarding the psychological processes that underly a person's experience of QOL. The Olson and Schober framework appears to be a fruitful way to combine different sources of information regarding QOL.
Janssen
C G C
CG
Department of Special Education, Free University, Amsterdam, The Netherlands. cgc.janssen@psy.vu.nl
Schuengel
C
C
Stolk
J
J
D017028:Caregivers / Q000523:psychology*; D005260:Female; D006040:Goals; D006801:Humans; D008607:Intellectual Disability / Q000451:nursing / Q000523:psychology*; D008297:Male; D009426:Netherlands; D011788:Quality of Life; D011795:Surveys and Questionnaires