Measurement of Quality of Life: content and face validity according to clients, their family & their professional caregivers

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