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'It was a lot tougher than I thought it would be'
- Source :
- Journal of Genetic Counseling, 26(6), 1324-1332. Wiley
- Publication Year :
- 2017
-
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.
- Subjects :
- 0301 basic medicine
Experiences
IMPACT
Sorrow
COMMUNICATION
030204 cardiovascular system & hematology
030105 genetics & heredity
DISEASE
FAMILIES
0302 clinical medicine
PARENTS
hemic and lymphatic diseases
Child
Genetics (clinical)
Qualitative Research
media_common
medicine.diagnostic_test
Genetic Carrier Screening
MOTHERS
Mother-Child Relations
Sadness
Feeling
Life course approach
Female
Qualitative
Psychosocial
Clinical psychology
Adult
REPRODUCTIVE CHOICES
medicine.medical_specialty
congenital, hereditary, and neonatal diseases and abnormalities
Genetic counseling
media_common.quotation_subject
Genetic Counseling
Hemophilia A
Hemophilia B
03 medical and health sciences
Quality of life (healthcare)
medicine
Humans
ATTITUDES
PRENATAL-DIAGNOSIS
Psychiatry
Genetic testing
business.industry
Quality of Life
Grief
Carrier
business
Subjects
Details
- Language :
- English
- ISSN :
- 10597700
- Volume :
- 26
- Issue :
- 6
- Database :
- OpenAIRE
- Journal :
- Journal of Genetic Counseling
- Accession number :
- edsair.doi.dedup.....b72110493ca84225333d762861513336