Sharing decisions on reproductive goals: A mixed-methods study of the views of women who have cystic fibrosis

Background: There are complex medical, psychological, social and economic aspects to becoming a par?ent with Cystic Fibrosis (CF). A shared decision-making (SDM) approach could help women with CF make

informed decisions about their reproductive goals that are sensitive to their individual values and pref?erences. This study investigated capability, opportunity, and motivation to participate in SDM from the

perspective of women with CF.

Methods: Mixed-methods design. An international online survey was completed by 182 women with

CF, to investigate participation in SDM in relation to reproductive goals, and measures of capability (in?formation needs), opportunity (social environment) and motivation (SDM attitudes and self-efficacy) to

engage in SDM. Twenty-one women were interviewed using a visual timelines method to explore their

SDM experiences and preferences. Qualitative data were analysed thematically.

Results: Women with higher decision self-efficacy reported better experiences of SDM relating to their

reproductive goals. Decision self-efficacy was positively associated with social support, age, and level of

education, highlighting inequalities. Interviews indicated that women were highly motivated to engage in

SDM, but their capability was compromised by lack of information, perception of insufficient opportuni?ties for focused discussions about SDM.

Conclusions: Women with CF are keen to engage in SDM about reproductive health, but currently lack

sufficient information and support to do so. Interventions at patient, clinician and system levels are

needed to support capability, opportunity and motivation to engage equitably in SDM in relation to their

reproductive goals.