Assessment & Research

The application of quality of life.

Brown et al. (2005) · Journal of intellectual disability research : JIDR 2005
★ The Verdict

Think quality of life first, deficits second, when you plan supports for people with ID.

✓ Read this if BCBAs who write ISP goals for adults or children with intellectual disability.
✗ Skip if Clinicians looking for a ready-made, psychometrically perfect QOL scale.

01Research in Context

01

What this study did

Hall et al. (2005) wrote a narrative review. They asked, "How should quality-of-life ideas guide services for people with intellectual disability?"

The authors mapped eight life domains. These include self-determination, social inclusion, and material well-being. They argued teams should use these domains instead of fixing deficits.

02

What they found

The paper gives no numbers. It is a call to action, not an experiment.

The main message: plan supports around what makes life good, not around what is "wrong" with the person.

03

How this fits with other research

Early et al. (2012) later tested the idea. They hunted for tools that measure QOL in people with ID plus challenging behaviour. Only six of twenty-four tools passed basic psych checks. None worked well for clients who hit, scream, or bolt. The review shows the 2005 vision is still ahead of the instruments.

Leonard et al. (2022) gave the vision numbers. They ran a latent profile study and found three QOL classes across diagnoses. Kids with Down syndrome landed in the high-QOL group; kids with Rett syndrome landed low. The study turns the 2005 domains into real profiles you can target.

Smit et al. (2019) went one step further. They gave adults with ID a short self-analysis course. Health-related quality of life went up. The pilot proves you can move from QOL talk to QOL change.

04

Why it matters

Stop writing goals that only fix problems. Use the eight QOL domains when you draft ISP targets. Ask the person (or guardian) which domain matters most this year. Pick one tool that Early et al. (2012) rated as sound, or adapt the QUALITRA-ID interview from Jones et al. (2010). Re-check the profile each review. Shifting from deficits to life-quality gives your client a voice and gives you clearer direction.

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Pick one QOL domain (self-determination, social inclusion, etc.) and add a related goal to your next ISP.

02At a glance

Intervention
not applicable
Design
narrative review
Population
intellectual disability
Finding
not reported

03Original abstract

BACKGROUND: Despite its popularity, to date little systematic work has been done in the application of the quality of life (QOL) concept to persons with intellectual disability (ID) and its impact on individuals and families. This article addresses that need. METHOD: The article summarizes the four application strands suggested by the IASSID SIRG on Quality of Life regarding the application of the QOL concept and discusses critical aspects of each. RESULTS: Examples and guidelines regarding each strand are presented, along with the ongoing need to align conceptualization, application, and research efforts and integrate QOL principles into professional education and training programmes. CONCLUSIONS: The QOL concept is now challenging some of the more traditional views and approaches to ID. These challenges are resulting in modifications and adaptations in current services and supports, along with the need to evaluate the outcomes from the application of QOL principles to persons with ID.

Journal of intellectual disability research : JIDR, 2005 · doi:10.1111/j.1365-2788.2005.00740.x