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Keywords:

  • family quality of life;
  • intellectual disability;
  • measurement;
  • quality of life

Abstract

Background  Family quality of life (FQOL) has emerged as an important outcome of service delivery for individuals with disabilities and their families. The purpose of this review was to explore the disparity of scale development approaches between families with children with disabilities and families from other populations and identify strengths to serve as a source of recommendations to improve the measurements of FQOL in the disability field.

Method  We conducted a keyword search of 25 databases. Sixteen measurement tools on FQOL, family well-being and family satisfaction currently used in the disability field, healthcare field and general family studies published in journals from 1980 to 2009 were included in the analysis.

Results  Three themes emerged from the detailed analysis and comparisons of the instruments: (1) description of the primary purpose and theoretical basis; (2) identification of the tool's respondents, domains, response formats and scoring strategies to assess family systems; and (3) summarisation of available psychometric information.

Conclusions  As family researchers continue their mission to conceptualise and theorise about FQOL, they should also promote the refinement of FQOL measurements and consider the implications from family instruments used in the healthcare and general family fields from the following aspects: (1) domains of FQOL; (2) units of analysis; (3) response format; (4) scoring choice; and (5) psychometric evaluation.