Mothers with CF: Psychosocial data about an almost unknown group Gerald Ullrich*, Ingrid Bobis**, Burkhard Bewig** * Self-employed scientist; Private Practice, Schwerin, Germany ** Adult CF centre, University Hospital Schleswig-Holstein, Kiel, Germany Dr. Gerald Ullrich Psychologist, Psychotherapist Schwerin, Germany ullrich@med-wiss.com Poster 256, 37th ECFC , 11 – 14 June 2014

Background and Aims Despite rising numbers of children born to mothers with CF, there are almost no data about the life experience of these women [1,2]. Therefore, we aimed to explore both CF-specific as well as generic aspects of motherhood with CF. Poster 256, 37th ECFC , 11 – 14 June 2014 Aims-Methods-Sample-Results-Conclusion-References

Methods Cross-sectional, mixed-methods study (qualitative and quantitative measures); The present part of the study is based on data assessed with a purpose-designed questionnaire. The questionnaire consists of 8 sections to describe a broad range of the life experience of a mother with CF. Items are multiple choice or fill in the gap items. Sections refer to: Impact of motherhood on CF; child wish and preparatory stage; pregnancy and birth; being a mother with CF at different developmental periods of the child; motherhood and marital relationship; “difficult” topics (communicating about CF and possible death); recommendations based on one’s own experience. Poster 256, 37th ECFC , 11 – 14 June 2014 Aims-Methods-Sample-Results-Conclusion-References

Procedure and Sample German CF centres were informed about the study. Of these, 19 CF centres were willing to cooperate and to refer our invitation letter to mothers treated at the respective CF centre. Overall, 73 women were informed by their local CF centre. Of these, 44 were willing to participate and 38 actually enrolled. Participants were on average 33y ± 7.1y old (see poster 259 for further details on mother’s age). The majority of women (76%) gave birth to one child, but 6 women had already two and 3 even three biological children. The mean age of the first-born child was 6.9y (0.9y to 25y). Mother’s CF mostly was diagnosed within the first two years of her life (71%), but 16% were diagnosed late (adolescence or adulthood). One mother’s CF diagnosis was confirmed only when she gave birth to her third child! FEV1 was below 70% in 17/29 mothers (lowest FEV1 20%). No woman had a lung transplant, so far. Poster 256, 37th ECFC , 11 – 14 June 2014 Aims-Methods-Sample-Results-Conclusion-References

Results (1): Reactions of significant others Pregnancy was planned in 74% of mothers. This was unrelated to age at first pregnancy. If pregnancy was planned, we asked about reactions of significant others towards child-wish (7 point smiley scale). If pregnancy was unplanned, we asked about reactions towards pregnancy (see table 1). Poster 256, 37th ECFC , 11 – 14 June 2014 Aims-Methods-Sample-Results-Conclusion-References

Results (2): Knowledge prior to pregnancy Box 1 There were considerable knowledge gaps regarding the possible impact of CF on pregnancy and vice versa (see Box 1). Information about respective influences mostly were given by CF practitioners (77%). Almost a quarter of women each complained about lack of access to relevant information (23%) or didn’t want to know details about it (23%). Poster 256, 37th ECFC , 11 – 14 June 2014 Aims-Methods-Sample-Results-Conclusion-References

Results (3): Overall judgement about the first year as a mother Box 2 At the end of the baby period the overall impression of mothers with CF was mixed (see Box 2). Poster 256, 37th ECFC , 11 – 14 June 2014 Aims-Methods-Sample-Results-Conclusion-References

Summary and conclusions Motherhood is increasingly becoming common in women with CF. Therefore, further information about their life experience is needed to enable comprehensive counseling as requested. Poster 256, 37th ECFC , 11 – 14 June 2014 Aims-Methods-Sample-Results-Conclusion-References

References and Acknowledgements [1] Frankl & Hjelte (2004) Parents who have cystic fibrosis - experiences and aspects of parenthood. J Cyst Fibros, Vol. 3, Suppl.1, p.103; [2] Cammidge et al. (2013) When women with CF become mothers: A qualitative study of psychosocial impact and adjustment. J Cyst Fibros, Vol. 12, Suppl. 1, p. 37 Acknowledgements: This study was supported in total by Novartis Pharma GmbH, Germany. We also appreciate the support from following colleagues: CF nurse specialist Kerscher and PD Dr. Fischer (Munich), Dipl. Soz.-Päd. Becker (Essen), Dr. Sauer-Heilborn (Hanover), Prof. Bargon (Frankfurt/Main), PD Dr. Kappler (Munich), Dr. Dieninghoff (Cologne), Dr. Hammermann (Dresden), Dr. Heyder (Stuttgart), Dr. Mainz (Jena), PD Dr. Mellies (Essen), Dr. Nährlich (Gießen), Dr. Köster (Oldenburg) Dr. Claßen (Bremen), Dr. Kinder (Neubrandenburg), Prof. Skopnik (Worms), Prof. Hebestreit (Würzburg), Dr. Breuel (Rostock), Dr. Heuer (Hamburg), Dr. Smacny (Frankfurt/Main), Dr. Vogl-Vosswinkel (Munich), Dr. Rietschel (Cologne), Dr. Wiebel / Dr. Pömpeler (Heidelberg), Dr. Büsing (Osnabrück), Prof. Ballmann (Bochum), PD Dr. Grüber (Frankfurt/Oder). Poster 256, 37th ECFC , 11 – 14 June 2014 Aims-Methods-Sample-Results-Conclusion-References