Background Primary ciliary dyskinesia (PCD) affects fertility in both women and men. To understand the impact and concerns among people with PCD and parents of affected children (family caregivers), we explored how they report their experiences with fertility.

Methods We used qualitative data from a questionnaire on fertility from Living with PCD, an international participatory study. In optional open-ended comment fields, participants shared their thoughts and experiences related to fertility. We adopted conventional content analysis and analysed the data inductively.

Results We identified five categories illustrating participants’ experiences with fertility: Challenging experiences of fertility care, PCD-related reproductive concerns, non-PCD-related factors complicating fertility, psychological impact of infertility, and family caregivers as gatekeepers of fertility information.

Conclusion We need enhanced support and standardised reproductive counselling and health care for people with PCD to enable informed decisions on fertility, and to reduce the fertility related concerns and psychological impact faced by many.

Highlights

– People with primary ciliary dyskinesia (PCD) had challenging fertility experiences

– Impact of PCD on pregnancy and disease heritability were causes for concern

– Other reasons not related to PCD but affecting fertility complicated the journey

– Infertility as an emotionally difficult topic strongly impacted participants’ lives

– Family caregivers acted as gatekeepers for fertility information of their children

The authors have declared no competing interest.

Our research was funded by the Swiss National Science Foundation, Switzerland (SNSF 192804, SNSF 10001934), the Swiss Lung Association, Switzerland (2021-08_Pedersen), and we also received support from the PCD Foundation, United States; the Verein Kartagener Syndrom und Primäre Ciliäre Dyskinesie, Germany; the PCD Support UK; and PCD Australia, Australia. LD Schreck, ESL Pedersen, YT Lam, CE Kuehni, and M Goutaki participate in the BEAT-PCD Clinical Research Collaboration supported by the European Respiratory Society.

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Bern Cantonal Ethics Committee (Kantonale Ethikkommission Bern) approved our study (Study ID: 2020-00830).

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