Aim: To assess the parenting experience of mothers with cystic fibrosis (CF) and to compare with normative data.
Methods: Cross-sectional study with a validated generic parental stress questionnaire (PSQ). This PSQ differentiates four components of parental stress: main factor "parental stress", compounding factor "role restrictions", protective factors "support from spouse", and "social support". Cut-off scores categorise results as "normal", "borderline" or "concerning".
Sample: Seventy-three women were informed by their local CF centre. Of these, 36 enrolled and had a first-born child aged 1-12 years (consistent with reference values of the PSQ). Of these, 31 (86%) returned the PSQ. Mean age of mothers was 32.6 years ± 6.9 years, mean age of first-born child was 5.2 years ± 3.4 years. Most of the mothers had one biological child, five women had two children and one had three children.
Results: Parental stress scores were normally distributed, the same applies for contributing factors and for the two protective factors. Favourable scores were twice as frequent as concerning scores. Mothers of younger children scored slightly better than mothers of school-aged children.
Conclusion: In line with the only comparable study, mothers with CF seem to be a remarkably resilient group who mostly cope well with parental stress even in the face of a progressive, chronic disease requiring time-consuming treatment.
Implications for rehabilitation: Today, motherhood is increasingly becoming an option in fertile women with cystic fibrosis. The additional burden of parenting seems to be rewarded by fulfilling essential personal goals. CF clinics should routinely address a possible wish for a child and to discuss it, openly.
Keywords: Adults; cystic fibrosis; parenthood; stress.