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

Williams, Denitza ORCID:, Esan, Oluwaseun B., Schlüter, Daniela K., Taylor-Robinson, David, Paranjothy, Shantini, Duckers, Jamie, Goodchild, Natalie and Phillips, Rhiannon 2023. Sharing decisions on reproductive goals: A mixed-methods study of the views of women who have cystic fibrosis. Journal of Cystic Fibrosis 22 (2) , pp. 207-216. 10.1016/j.jcf.2023.02.007

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Background There are complex medical, psychological, social and economic aspects to becoming a parent 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 preferences. 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 (information 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 opportunities 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.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Publisher: Elsevier
ISSN: 1569-1993
Date of First Compliant Deposit: 6 March 2023
Date of Acceptance: 13 February 2023
Last Modified: 03 Jun 2023 05:55

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