From children to young adults: cystic fibrosis and siblingship A longitudinal study

Aim: To compare the results from our previous study in 1994/95 of children with cystic fibrosis (CF) at the age of 6-14 years and their healthy siblings with data from the same participants as young adults in regard to their self-esteem, life satisfaction and attitudes towards the CF siblingship situation. Methods: Thirty-seven sibling pairs participated. Three instruments were used: The 'As I see myself' self-evaluation questionnaire; the 'Ladder of life', assessing life satisfaction; and the 'Sibling Mirror', reflecting a person's feelings, when one's sibling or oneself has CF. Results: Contrary to 1994/95 study results, the female participants showed no signs of impaired self-esteem. Concerning life satisfaction, women in both groups and the men with CF have lower ratings than a healthy reference group. Individuals with CF look upon themselves today as independent, thoughtful and mature, but remember themselves as being active, spoiled or fussy. Healthy siblings consider themselves diplomatic, responsible, mature, important and loyal but remember themselves as angry, envious and neglected. Conclusion: The self-esteem of women in the sibling pairs (whether with CF or healthy sisters) has improved since their childhood. Overall, the results indicate that young adults with CF today are medically well controlled and psychosocially well adapted, albeit aware of their precarious future.