Quality of Life and Persons with Intellectual Disability: Can We Measure QOL in This Population?
Quality of life (QOL) has been discussed by professionals working with persons with intellectual disability (ID) for some time, but since QOL is concerned with subjective well-being, satisfaction and happiness, how is it possible to measure, when the person in question is unable to communicate? Consciousness is believed to be an internal and personal thing, but we have done the simple experiment to ask observers to rate QOL of another person, also in sub dimensions like self-assessed physical and mental health, relationship with self, self-assessed sexual ability, self-assessed social ability, and we have found that people are able to assess the QOL rather accurate of other people. The fact that we are fairly able to read other person‘s mind and tell their state of consciousness, quality of life and quality of relationships indicate that we are able to share consciousness as an objective phenomenon. As a practical consequence we can measure QOL of people who are unable to communicate allowing us to improve care and make better decisions about life and death. We recommend observer-rated QOL1/QOL5/QOL10 for quality assurance of the medical, psychological or CAM/holistic therapeutic treatments of all patients groups that for some reason, i.e. ID, coma, psychosis, and brain damage has no sufficient language, intelligence, self-insight or ability to rate themselves. We find that the Personal-Development-Q5 (PD5) questionnaire measuring the level of personal developmental in five dimensions: emotions, mind, sexuality, spirituality and I-strength, can also be observer-rated. A strategy for measuring QOL in persons with intelligence deficits (ID) is presented.
The Danish Quality of Life Survey, Quality of Life Research Center and The Research Clinic for Holistic Medicine, Copenhagen, was from 1987 until today supported by grants from the 1991 Pharmacy Foundation, the Goodwill-fonden, the JL-Foundation, E. Danielsen and Wife's Foundation, Emmerick Meyer's Trust, the Frimodt-Heineken Foundation, the Hede Nielsen Family Foundation, Petrus Andersens Fond, Wholesaler C.P. Frederiksens Study Trust, Else and Mogens Wedell-Wedellsborg's Foundation and IMK Almene Fond.
Ventegodt, Søren; Omar, Hatim A.; Struve, Flemming; Nielsen, Tove K.; Kandel, Isack; and Merrick, Joav, "Quality of Life and Persons with Intellectual Disability: Can We Measure QOL in This Population?" (2010). Pediatrics Faculty Publications. 249.
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Published in Journal of Alternative Medicine Research, v. 2, issue 4, p. 459-471.
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