Abstract
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.
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.
| Original language | English |
|---|---|
| Pages (from-to) | 207-216 |
| Number of pages | 9 |
| Journal | Journal of Cystic Fibrosis |
| Volume | 22 |
| Issue number | 2 |
| Early online date | 28 Feb 2023 |
| DOIs | |
| Publication status | Published - Mar 2023 |
Bibliographical note
AcknowledgementsWe would like to thank Lorna Allen from the CF Trust, BEAM and the Cystic Fibrosis Foundation for their support in publicising the study. We would like to thank our public partner Ms Cleo Goodchild. Above all we would like to thank all the women who took part and shared their stories with us, without them this work would not be possible.
Funding
This study was funded by a Health and Care Research Wales Research for Public and Patient Benefit grant (reference: RfPPB-18-1497 T). The funders had no role in the design, conduct, analysis, or interpretation of findings, or the decision to submit this manuscript for publication.
Keywords
- Cystic Fibrosis
- pre-conception
- shared decision-making
- person-centred care
- mixed methods
- reproductive goals