Experiences of Patients with Vascular Connective Tissue Disorders on the Family Planning Option of Surrogacy
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Authors
Makaram, Aditi
Flores, Abigail
Issue Date
2024-05-01
Type
thesis_closed
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Keywords
Vascular Connective Tissue Disorders , Marfan syndrome , Ehlers Danlos syndrome , Surrogacy , Family Planning , Pregnancy , Cardiology
Genetics and Genomics
Obstetrics and Gynecology
Alternative Title
Human Genetics Theses
Abstract
Patients with vascular connective tissue disorders (vCTDs) are counseled on the risks of carrying a pregnancy and alternative methods of family planning. We performed semi-structured interviews to explore the experiences of individuals with vCTDs and a subset of their partners about decision-making related to alternative family planning options, specifically focusing on those considering surrogacy. This cross-sectional qualitative study investigated key themes in decision-making and experiences pursuing alternative family planning options (surrogacy, in vitro fertilization, adoption), and advice to peers and medical professionals about family planning counseling. Participants noted a lack of specific information from medical professionals about these alternative options, necessitating the need for self-education. Major factors weighed by participants in decision-making included cost, duration of time for the process, influence of a person’s social network (friends, family, agencies/consultants), and emotional toll. Participants discussed emotional factors (anxiety, fear, loss of control, uncertainty) influence on decision-making and the surrogacy experience. Participant advice to medical professionals regarding discussion about having children included gauging the patient’s receptiveness to the acceptance of the information and tailoring the amount and timing of information. Limitations of this study include sample size and selection bias, impacting the generalizability and transferability of the data to others in the vCTD community. Overall, a lack of information about alternative family planning options from medical providers provides insight into the need for resources to aid in education. Further areas of research include exploring barriers to surrogacy in the wider vCTD population and creation of an informational tool for patient education.
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