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Participation and quality of life

Participation and quality of life

To many chronically ill and disabled patients, the degree to which they can play a part in society is the most important measure of the outcome of care. People with a chronic illness or disability are vulnerable in more than one aspect. Apart from their illness, their financial position is often weaker than others’ as well. They have to make ends meet on social security benefits more often, and they have added costs due to their illness or disability. Paid employment is the most important remedy to change this financial position. In addition to this, it also boosts many people’s self-esteem. Because of this, NIVEL and other parties have developed a course for kidney patients with the aim of preventing drop-out from the labour market and strengthening their autonomy. This course is being implemented nationwide at the moment and its effects will be assessed and included in a thesis in 2010-2011.

Since 2005, NIVEL has been operating a national participation monitor among people with a physical or mental disability. NIVEL uses a participation index for this, which measures the participation of a number of target groups annually within several domains (housing, education, work, leisure activities, social contact and transportation). As of 2010, the participation monitor will be expanded to include elderly people living on their own and the general population.

The coming years, the effects of the Social Support Act and the new Law for the compensation of the chronically ill and disabled [Wtcg] will also be monitored for the participation in society and the financial position of chronically ill or disabled people, respectively.
People with a chronic illness or disability usually perceive their health and quality of life to be much worse than people in the general Dutch population. In the National Panel of the Chronically Ill and Disabled, the developments in this field are being monitored at the moment.