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Making sense of health-related quality of life in people with Down’s syndrome

Survey of almost 200 families identifies major social factors affecting daily life 
Quality of life

Survey of almost 200 families identifies major social factors affecting daily life

Quality of life is difficult to measure, not least as it is subject to personal perceptions and values, as well as cultural context, previous experiences and aspirations. Quality of life, however, overlaps with concepts of health and well-being.

This study sought to explore what determines health-related quality of life among people with Down’s syndrome aged 16-31 years.

Lack of meaningful activity

The findings confirm that, while addressing ill health, nurses and other practitioners should also address social factors, including isolation and lack of meaningful activity.

Using several validated instruments, 197 families were surveyed. More than half had problems affecting their daily life, with almost one third being obese. The global impact of illness and the effect of mental health and bowel conditions all had

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