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

<p>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</p> <p>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</p> <p>perspective of women with CF.</p> <p>Methods: Mixed-methods design. An international online survey was completed by 182 women with</p> <p>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</p> <p>engage in SDM. Twenty-one women were interviewed using a visual timelines method to explore their</p> <p>SDM experiences and preferences. Qualitative data were analysed thematically.</p> <p>Results: Women with higher decision self-efficacy reported better experiences of SDM relating to their</p> <p>reproductive goals. Decision self-efficacy was positively associated with social support, age, and level of</p> <p>education, highlighting inequalities. Interviews indicated that women were highly motivated to engage in</p> <p>SDM, but their capability was compromised by lack of information, perception of insufficient opportuni?ties for focused discussions about SDM.</p> <p>Conclusions: Women with CF are keen to engage in SDM about reproductive health, but currently lack</p> <p>sufficient information and support to do so. Interventions at patient, clinician and system levels are</p> <p>needed to support capability, opportunity and motivation to engage equitably in SDM in relation to their</p> <p>reproductive goals.</p>