ArticleJournal of genetic counseling2017
"It was a lot Tougher than I Thought It would be". A Qualitative Study on the Changing Nature of Being a Hemophilia Carrier.
Article in Journal of genetic counseling, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.
- The experiences and attitudes of hemophilia carriers around pregnancy: A qualitative systematic review.Journal of thrombosis and haemostasis : JTH · 2020Pooled it
- Hemophilia's Overlooked Female Face.Journal of clinical medicine · 2026Review
- Clinical spectrum of Wiskott-Aldrich syndrome carriers: Self-reported survey of 193 carriers.Clinical immunology (Orlando, Fla.) · 2026Article
- Reproductive decision-making for Barth syndrome carriers: Unexplored complexities.Journal of genetic counseling · 2025Article
- 'In the dark': parents' lifelong commitment to supporting children with Bardet-Biedl syndrome.Health psychology and behavioral medicine · 2025Article
- What have we learned about the patient's experience of von Willebrand disease? A focus on women.Hematology. American Society of Hematology. Education Program · 2022Review
- Insights into the Molecular Genetic of Hemophilia A and Hemophilia B: The Relevance of Genetic Testing in Routine Clinical Practice.Hamostaseologie · 2022Review
- Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers.Research and practice in thrombosis and haemostasis · 2022Article
- Families with complex needs: an inside perspective from young people, their carers, and healthcare providers.Journal of community genetics · 2022Article
- The lived experience of women with a bleeding disorder: A systematic review.Research and practice in thrombosis and haemostasis · 2022Review
- Men with an FMR1 premutation and their health education needs.Journal of genetic counseling · 2021Article
- "There Are Hills and Valleys": Experiences of Parenting a Son With X-Linked Retinoschisis.American journal of ophthalmology · 2020Article
- The experience of postpartum bleeding in women with inherited bleeding disorders.Research and practice in thrombosis and haemostasis · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Studies on carriers of genetic disorders mainly focus on the process of genetic testing and reproductive choices, and less on how psychosocial aspects of being a carrier change over time. Our study sought to understand more about the psychosocial aspects of hemophilia carrier status, and thereby improve counseling aiming to advance carriers' quality of life and well-being. We analyzed 16 in-depth interviews from women who were carriers of hemophilia and had a son with hemophilia. Three themes emerged: Guilt and sorrow across generations; the choices and future consequences of genetic testing; and preparing to have a child with hemophilia. Experience with being a hemophilia carrier is a process that changes over time while feelings of guilt and sorrow run across generations. The carrier status may create "mothers-in-waiting" living at risk of having a sick child or not. The women think they are prepared to have a son with hemophilia, but experience more sadness than they expect when a son is diagnosed. Our findings suggest that health professionals, especially clinical geneticists and genetic counselors, carriers, families and patient organizations need to be aware that women's experiences of being a carrier of hemophilia changes during the biographical life course. The women may benefit from several rounds of genetic counseling at different stages of life.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.