Abstract
PurposeTo examine children’s health-related quality of life and parents’ satisfaction with life and explore the association between the two in families where a child has a rare disorder.MethodsWe used a cross-sectional study design. A questionnaire was sent to parents of 439 school children (6–18 years) with congenital rare disorders. Children’s health-related quality of life (HRQOL) was examined by Pediatric Quality of Life InventoryTM 4.0 (PedsQL) Norwegian version. Satisfaction with life was examined by Satisfaction with Life Scale (SWLS).ResultsThe response rate was 48% (n = 209). The average age of the children was 12 years and 50% were girls. The parents scored their children with reduced physical, emotional, social and school functioning. The reductions were greatest in the physical area. Parents scored average to high on SWLS but significantly lower than the general Norwegian population. There was a positive association between parental SWLS and the children’s social functioning and school functioning.ConclusionChildren with congenital, rare disorders often require assistance from many parts of the public service system. Caring for their physical needs should not conflict with their educational and social needs. It is important that the children’s school-life is organized so that the diagnosis does not interfere with the children’s education and social life more than necessary.
Highlights
Living with illness and disability can affect everyday life in several ways
This study shows that parent-reported health-related quality of life (HRQOL) is significantly lower for children with rare disorders than for Norwegian school children
This study shows that parents of children with rare diagnoses score their children with lower health-related quality of life than the parents of the general population
Summary
Living with illness and disability can affect everyday life in several ways. Some people with disabilities are continually or periodically in need of specialized medical care. Many need individual facilitation and adaptation in education, work and everyday life. Physical disability may lead to reduced interaction with other children because of decreased ability to play and keep up with children without disability, and because of accessibility problems. Cognitive and emotional problems may present challenges in learning and social participation. It has been shown that children with disability have
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