– With a focus on the life-span perspective I have studied how chronic childhood arthritis may influence young people’s health and quality of life, says Ingrid Landgraff Østlie who worked as Head Nurse in the Children’s Unit in Elverum Hospital in Norway for many years.
Approximately one child per thousand under 16 years old suffers from chronic childhood arthritis in the Nordic countries, almost as many as those suffering from childhood diabetes. The dominating symptoms are pain, fatigue and limited joint motility. The disease’s unpredictable course makes it difficult to plan everyday life. This may have consequences for the entire family.
– One has to learn early in life to take one day at a time, says Ingrid Landgraff Østlie who now works as a lecturer for nursing students at Gjøvik University College, Norway.
Longing to be like one’s peers may cause protest and denial of the disease as well as a negative self-image. Most of the adolescents learn to cope with the disease and to adjust themselves to the limits caused by the disease. However one often feels weak and different, and as an adult one gets more concerned about health and life course in the future.
Most of these young people have to consider the disease limitations when deciding on education and training. Therefore, it is interesting to observe the higher frequency of young people with chronic childhood arthritis having a higher education, especially young women, as compared to the general Norwegian population. Also, there seems to be no difference in employment frequency compared to the country’s residents.
Children considered health professionals they met to be close and caring. However, they got less understanding of the health problems at school. Health professionals in adult ward were perceived as more organ-focused and impersonal. A more organised planning and follow-up provided by health professionals and school teachers may contribute to a person’s acceptance of the life situation in childhood and adolescence. Moreover, this may help the young people take care of themselves and make the most of their potential.