Abstract
Aim: This study contributes to the accuracy of the Quality of Life (QoL) measurement in people with intellectual disabilities (ID) by exploring the content and face validity of the different angular points (client, family, caregiver) with the use of selected existing measurement instruments. Methods: First, literature and an expert meeting were used to identify QoL instruments used in the Netherlands. Domains covered by these instruments were compared with domains from the WHO QoL framework. Second, data was collected by means of interviews. Participants were: 6 clients with mild to moderate ID, and complemented each with a family member and their professional caregiver. Participants were recruited through care provider ‘s Heeren Loo. Interviews were done with a carefully designed interviewguide. Participants were asked about the importance of QoL domains and individual items for QoL for the person with ID. The interviews were analyzed using content and domain analysis taking into account that client, family and caregiver were talking about the same client. Recruitment started May 2013. Interviews took place in May – June 2013. Results: Different QoL measurement instruments are used in the Netherlands. Most of these are based on Schalock’s work and include the domains: interpersonal relations, social inclusion, personal devolopment, physical wellbeing, self-dertermination, material wellbeing, emotional wellbeing, rigths and religion. Religion is part of the WHO framework but not of Schalock’s. Conclusion: Despite the paradigm that QoL for people with ID ought not differ from that of the general Dutch population, not all domains from the WHO QoL-framework and the Schalock QoL framework were covered in the QoL instruments used for people with ID. The combination of literature study and interviews suggest the content validity of currently used QoL instruments might be limited. The interviews in this study will help to further investigate the face validity of items included in QoL instruments.
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