‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers
ABSTRACT Background Primary ciliary dyskinesia (PCD) affects fertility in both females and males. 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 qualitativ...
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| Format: | Article |
| Language: | English |
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Wiley
2025-06-01
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| Series: | Health Expectations |
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| Online Access: | https://doi.org/10.1111/hex.70316 |
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| author | Leonie D. Schreck Sophie Meyer Eva S. L. Pedersen Yin Ting Lam Hansruedi Silberschmidt Sara Bellu Living with PCD patient advisory group Sofía C. Zambrano Claudia E. Kuehni Myrofora Goutaki |
| author_facet | Leonie D. Schreck Sophie Meyer Eva S. L. Pedersen Yin Ting Lam Hansruedi Silberschmidt Sara Bellu Living with PCD patient advisory group Sofía C. Zambrano Claudia E. Kuehni Myrofora Goutaki |
| author_sort | Leonie D. Schreck |
| collection | DOAJ |
| description | ABSTRACT Background Primary ciliary dyskinesia (PCD) affects fertility in both females and males. 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 Out of 384 survey respondents, 206 (54%) provided free‐text comments that we included in this analysis. We identified five categories illustrating participants' experiences with fertility: (1) challenging experiences of fertility care, ranging from insufficient fertility evidence to poor care from treating physicians, leading to an overall perception of inadequate care related to fertility; (2) PCD‐related reproductive concerns, such as pregnancy risks, heritability of PCD and delayed PCD diagnosis; (3) non‐PCD‐related factors complicating fertility, such as challenges in accessing fertility treatment, age as a limiting factor for fertility and other diseases affecting fertility; (4) psychological impact of infertility, marked by emotional distress, grief and coping strategies; and (5) family caregivers as gatekeepers of fertility information, reflecting their role in managing, delaying, or shaping how and when children learn about fertility. Conclusion We need enhanced support and standardised reproductive counselling and healthcare for people with PCD to enable informed decisions on fertility and to reduce the fertility‐related concerns and psychological impact faced by many. Patient or Public Contribution This participatory study was co‐designed with people with PCD and a patient advisory group. Patients actively shaped research priorities, contributed to study design and questionnaire development, and played a key role in data interpretation and dissemination. |
| format | Article |
| id | doaj-art-b8c6dea203894e7682f38f41dc8faa02 |
| institution | Matheson Library |
| issn | 1369-6513 1369-7625 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj-art-b8c6dea203894e7682f38f41dc8faa022025-06-27T05:43:05ZengWileyHealth Expectations1369-65131369-76252025-06-01283n/an/a10.1111/hex.70316‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family CaregiversLeonie D. Schreck0Sophie Meyer1Eva S. L. Pedersen2Yin Ting Lam3Hansruedi Silberschmidt4Sara Bellu5Living with PCD patient advisory groupSofía C. Zambrano6Claudia E. Kuehni7Myrofora Goutaki8Institute of Social and Preventive Medicine University of Bern Bern SwitzerlandInstitute of Social and Preventive Medicine University of Bern Bern SwitzerlandInstitute of Social and Preventive Medicine University of Bern Bern SwitzerlandInstitute of Social and Preventive Medicine University of Bern Bern SwitzerlandVerein Kartagener Syndrom und Primaere Ciliaere Dyskinesie Deutschland Wetzikon SwitzerlandAssociazione Italiana Discinesia Ciliare Primaria Sindrome di Kartagener Onlus Bari ItalyInstitute of Social and Preventive Medicine University of Bern Bern SwitzerlandInstitute of Social and Preventive Medicine University of Bern Bern SwitzerlandInstitute of Social and Preventive Medicine University of Bern Bern SwitzerlandABSTRACT Background Primary ciliary dyskinesia (PCD) affects fertility in both females and males. 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 Out of 384 survey respondents, 206 (54%) provided free‐text comments that we included in this analysis. We identified five categories illustrating participants' experiences with fertility: (1) challenging experiences of fertility care, ranging from insufficient fertility evidence to poor care from treating physicians, leading to an overall perception of inadequate care related to fertility; (2) PCD‐related reproductive concerns, such as pregnancy risks, heritability of PCD and delayed PCD diagnosis; (3) non‐PCD‐related factors complicating fertility, such as challenges in accessing fertility treatment, age as a limiting factor for fertility and other diseases affecting fertility; (4) psychological impact of infertility, marked by emotional distress, grief and coping strategies; and (5) family caregivers as gatekeepers of fertility information, reflecting their role in managing, delaying, or shaping how and when children learn about fertility. Conclusion We need enhanced support and standardised reproductive counselling and healthcare for people with PCD to enable informed decisions on fertility and to reduce the fertility‐related concerns and psychological impact faced by many. Patient or Public Contribution This participatory study was co‐designed with people with PCD and a patient advisory group. Patients actively shaped research priorities, contributed to study design and questionnaire development, and played a key role in data interpretation and dissemination.https://doi.org/10.1111/hex.70316fertility experiencesparticipatorypatient‐reportedprimary ciliary dyskinesiaqualitative researchreproductive health |
| spellingShingle | Leonie D. Schreck Sophie Meyer Eva S. L. Pedersen Yin Ting Lam Hansruedi Silberschmidt Sara Bellu Living with PCD patient advisory group Sofía C. Zambrano Claudia E. Kuehni Myrofora Goutaki ‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers Health Expectations fertility experiences participatory patient‐reported primary ciliary dyskinesia qualitative research reproductive health |
| title | ‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers |
| title_full | ‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers |
| title_fullStr | ‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers |
| title_full_unstemmed | ‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers |
| title_short | ‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers |
| title_sort | nobody has ever spoken to me about pcd and fertility issues fertility experiences of people with primary ciliary dyskinesia and their family caregivers |
| topic | fertility experiences participatory patient‐reported primary ciliary dyskinesia qualitative research reproductive health |
| url | https://doi.org/10.1111/hex.70316 |
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