[Mothers with cystic fibrosis: psychosocial data about an almost unknown group]

Abstract

Aims: To explore pregnancy and motherhood in cystic fibrosis patients from the women's perspective.

Methods: Data were assessed with a purpose designed questionnaire and the paper focuses on the following sections: "pregnancy and birth" (feedback of significant others, women's knowledge, concerns, and overall judgement), and the "first year as a mother" (overall judgement).

Sample: 38/73 mothers filled in the questionnaire; mean age was 33.8 y ± 7.1 y and mean age of firstborn child was 6.9 y ± 5.7 years. Nine women had more than one biological child. 18 mothers (47 %) were currently employed, 12 of whom with 19 to 30 hours per week and none full-time. Mean FEV1 in perc. Pred. was 66 ± 19 %.

Results: Pregnancy in CF should be planned and prepared, and this was achieved in 28 women, while 10 pregnancies were unplanned. The feedback of significant others towards wish for child/pregnancy was more positive in those who planned. Mothers' own parents reacted least enthusiastic, irrespective of whether or not pregnancy had been planned. The feedback of CF-teams differed according to women's lung function. The women's knowledge about "pregnancy and CF" was rather poor. Their concerns predominantly referred to detrimental effects of CF medication to the unborn child.

Conclusions: Motherhood is increasingly becoming an option for young women with CF. Therefore, CF-teams are well-advised to proactively engage them in a dialogue about wish for child and impact of CF on motherhood. Knowledge about pregnancy/motherhood and CF should be increased.