CP í norðri - Hvernig farnast einstaklingum með Cerebral Palsy á Norðurlöndunum? Kynning á samnorrænu 4ra ára rannsóknarverkefni

Abstract

In CP-North a highly qualified team of researchers from the Nordic countries will address a number of societal challenges associated with living with, or being a parent of a child with CP in Norden by merging data from national registers with unique health data from quality registers. Cerebral palsy (CP) is rare, but still the most common musculoskeletal childhood disability. How persons with CP fare in life in terms of health, quality of life, education, employment, and income is virtually unknown. Also, very little is known about how parents of children with CP − both young and grown-up− fare, in terms of health, stress, employment, and income. Although the Nordic countries have strong welfare systems it is unknown to what extent the added burden related to disability are actually compensated for. With CP-North, the world’s largest dataset of persons with CP, their parents, and controls from the general population will be created. The knowledge gain is expected to influence how the social support systems in the Nordic countries are constructed and how healthcare is organized for this population. Findings will also be of interest to the international community as the size, richness, and generalizability of the data set will allow investigation of questions that cannot be studied elsewhere. Comparison between the Nordic countries, with identification of successful and unsuccessful policies for the group, allows the countries to learn and benefit from each other.