Considerations for the Role and Implementation of Reproductive Health Shared Decision-Making Interventions for Cystic Fibrosis: A Qualitative Investigation of Perspectives From Clinicians and Females With Cystic Fibrosis.

Abstract

Introduction: Advances in cystic fibrosis (CF) treatment have seen more people with CF starting a family. Females with CF (FwCF) have expressed a need for improved reproductive health-related shared decision-making (SDM) with health care providers. This study explored perspectives of FwCF and clinicians on the role and implementation of SDM tools in CF reproductive health care.

Methods: We conducted qualitative semi-structured interviews with FwCF and clinicians. We recruited clinicians through professional networks and FwCF via a previous study and social media. Interviews explored experiences of SDM related to reproductive health. Participants were given examples of SDM tools and asked to consider their utility within CF care. We analyzed interview transcripts using an inductive approach, identifying key themes.

Results: Six FwCF and 23 clinicians participated. Four themes were identified: Perceived usefulness of an SDM approach for CF reproductive health, Role of tools in facilitating SDM, Considerations for SDM tool development, and Implementation of SDM in routine CF care. Participants saw information provision as key to SDM, enhancing patient confidence to initiate and engage in conversations. Participants considered SDM tools helpful at three stages: preparing for consultations, facilitating in-consultation communication, and supporting post-consultation reflection and discussion. Trustworthy content was key to engagement. Participants felt reproductive health conversations should start in adolescence and recur throughout the life course. Clinicians highlighted the need for a service-wide culture supporting SDM.

Conclusions: Both groups supported early and ongoing reproductive health-related SDM. Further research should evaluate CF-specific reproductive health SDM interventions that build confidence, skills, and foster a health-service culture supportive of SDM.