Measuring Family Quality of Life: Scoping Review of the Available Scales and Future Directions

The lack of quality of life is a key issue for families with children with an intellectual disability. While the quality of life for people with disabilities has previously been researched as an individual variable, this has now shifted to include family members. The purpose of this study was to conduct a review of the studies measuring the quality of life of families with an intellectually disabled member, in order to identify the most commonly used scales and their psychometric properties.

Data were collected from six databases (ERIC, Web of Science, Scopus, CINAHL, MedLine, and Google Scholar), and this search yielded 3948 studies. One hundred and twenty studies that met the inclusion criteria were included in this study.

Nine scales were used in the last years to measure the quality of life for families with individuals with an intellectual disability. The Beach Center scale was the most common scale, followed by the Family Quality of Life Survey and the World Health Organization's quality of life assessment (WHOQoL-BREF). The results showed that the included studies in the review lack the consideration of a broader population representing the different types of cultures with different socioeconomic backgrounds. Key aspects used to assess the FQoL are environmental factors (proximal and distal factors), as well as economic factors.

Although the operationalization of the FQoL often incudes several subthemes, a general agreement regarding which domains of the FQoL need to be included in the measurements, and these do not exist right now. Moreover, multidimensional scales are still rare.