The concept of quality of life: what we know and do not know.
Use both self and caregiver QOL tools that fit the client’s culture, then add real-life supports and check again.
01Research in Context
What this study did
Schalock (2004) read every quality-of-life paper about people with intellectual disability.
The author sorted what we know, what we half-know, and what we still do not know.
No new data were collected; the paper is a map, not an experiment.
What they found
Quality of life is many things at once: health, work, friends, choice, and culture.
No single tool can catch all of these parts.
Culture changes what "a good life" looks like, so our tests must change too.
How this fits with other research
Nevin et al. (2005) took the map and wrote a ruler. They give six quick questions (who, what, when, where, why, how) to judge any QOL tool before you use it.
Hatton et al. (2005) tested the culture claim. They asked 781 people in four countries and found some life domains are universal while others are culture-specific.
Balboni et al. (2013) and Celletti et al. (2012) show the map in action. When clients cannot speak for themselves, caregiver ratings work. When they can, ask them. Either way, more supports and real jobs raise scores.
Why it matters
Stop hunting for the perfect QOL form. Pick two tools: one for the client and one for a close caregiver. Check that the questions match the person’s culture and daily life. Add supports like supported work or community living, then re-test. This simple bundle is evidence-based and takes one extra hour per plan review.
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02At a glance
03Original abstract
BACKGROUND: Over the past two decades the concept of quality of life (QOL) has increasingly become a focus for research and application in the fields of education/special education, health care (physical and behavioural), social services (disabilities and ageing), and families. METHODS: This article summarizes our current understanding of the construct of individual QOL as it pertains to persons with intellectual disabilities (ID). The article's three major sections discuss what we know, what we are beginning to understand, and what we still do not know about the QOL construct. RESULTS: We currently know the importance of the QOL construct as a service delivery principle, along with its current use and multidimensional nature. We are beginning to understand the importance of methodological pluralism in the assessment of QOL, the multiple uses of quality indicators, the predictors of assessed QOL, the effects of different data collection strategies, and the etic (universal) and emic (culture-bound) properties of the construct. We have yet to understand fully the use of QOL-related outcomes in programme change, how to best evaluate the outcomes of QOL-related services, and how to use the concept of QOL to impact public and disability reform. CONCLUSION: The article concludes with a brief discussion of future challenges related to demonstrating the concept's social validity and positive impact on the lives of persons with ID.
Journal of intellectual disability research : JIDR, 2004 · doi:10.1111/j.1365-2788.2003.00558.x