The quantitative measurement of family quality of life: a review of available instruments.
Most family-quality tools are too narrow—choose ones that cover money, fun, and work, and have real stats behind them.
01Research in Context
What this study did
The authors hunted for every tool that claims to measure family quality of life.
They found 16 scales used with disability, mental-health, or medical families.
Each scale was scored for how well it was built: sample size, clarity, real-family input, and statistics.
What they found
Only a handful of tools had strong numbers behind them.
Most were short, asked only about the child’s disability, and skipped family-wide topics like money, jobs, or fun together.
The team listed five fixes: use big samples, add non-disability items, test with diverse cultures, check if scores stay stable, and ask families if the questions feel right.
How this fits with other research
Siklos et al. (2006) built a needs quiz that already follows two of the fixes: it asks about respite, money, and community inclusion, not just autism traits.
Sivberg (2002) showed ASD parents feel higher strain, so a good FQOL tool must capture that stress domain—something many scales miss.
Suhrheinrich et al. (2020) proved a short 3-point checklist can still hit 99 % reliability; brief but solid is possible if you test it right.
Together these papers say: keep it short, but keep it broad and psychometrically tough.
Why it matters
Before you pick a family survey, flip to the psychometric table.
If it only asks about the child’s diagnosis, swap it for one that also asks about money, work, and free time.
Your data will better guide where the family really needs help, not just where the disability shows up.
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02At a glance
03Original 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.
Journal of intellectual disability research : JIDR, 2011 · doi:10.1111/j.1365-2788.2011.01463.x