Assessment & Research

Review: the development of family quality of life concepts and measures.

Samuel et al. (2012) · Journal of intellectual disability research : JIDR 2012
★ The Verdict

Family quality of life tools have grown up; use the trimmed FQOLS-2006 and always check cultural fit.

✓ Read this if BCBAs writing family goals or picking intake measures for kids with ID/DD.
✗ Skip if Clinicians only running direct 1:1 teaching with no family programming.

01Research in Context

01

What this study did

Falcomata et al. (2012) wrote a story-style review. They tracked how "family quality of life" grew from a parent mood check into a full family-centered yardstick.

The paper maps two big toolkits: the Beach Center Family Quality of Life Scale and the Family Quality of Life Survey-2006. It shows how each was built and where they overlap.

02

What they found

The field moved from asking "How sad is mom?" to "How well does the whole family live?" Domains like finances, support, and togetherness now sit beside child progress.

Both major tools cover five similar areas, but they use different item styles and scoring rules. Researchers can pick either; clinicians should check which fits their families.

03

How this fits with other research

Cançado et al. (2011) scanned 16 instruments one year earlier. They warned most tools lacked strong psychometrics. Falcomata et al. (2012) echo that call and show how later versions tried to fix it.

Leaf et al. (2012) tested the FQOLS-2006 with numbers. They proved you can drop the Importance and Stability sub-scales and still get a clean five-factor fit. The review folds that fix into its timeline.

Guerrero et al. (2025) extends the story to rural Peru. Only 27 of 59 standard items made sense to parents there. The review’s tidy history now meets real-world cultural limits.

04

Why it matters

You now have a short road map of family quality of life tools. Pick a tool that matches your families’ culture and language. Skip the Importance sub-scale to save time. Add loneliness and community items after you see the Gur et al. (2024) link to resilience. Most important: ask about money and support—those gaps hurt the most.

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Print the 25-item Beach Center scale, cross off the Importance column, and give it to your next new family during intake.

02At a glance

Intervention
not applicable
Design
narrative review
Population
intellectual disability, developmental delay
Finding
not reported

03Original abstract

Historically, intervention programmes in intellectual and developmental disabilities have targeted the individual's special needs independent of the family and environmental context. This trend has been changing over the past two decades. This paper presents a literature review on changing trends in family support and the development of family quality of life (FQOL) and intellectual disability from a construct to a theory. The evolution of research in quality of life from the perspective of the individual with the disability to the family is described. A description of the development of FQOL measures is included, specifically an introduction and comparison of the two leading comprehensive initiatives on measuring FQOL - international FQOL project and the FQOL initiative of the Beach Center on Disability, in the USA. This paper provides the conceptual background and context to the other papers presented in this special issue, which focus on FQOL measurement in specific contexts.

Journal of intellectual disability research : JIDR, 2012 · doi:10.1111/j.1365-2788.2011.01486.x