Avoiding Re-Traumatization and Healthcare Avoidance in Women with MRKH Syndrome
Disciplines
Health Psychology | Other Mental and Social Health | Psychological Phenomena and Processes | Quality Improvement
Abstract (300 words maximum)
Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH) is a congenital disorder among biological females that is characterized by the absence or underdevelopment of the uterus, vagina, and cervix (Laggari et al., 2009). For most women, diagnosis does not occur until adolescence, usually in response to concern about not beginning to menstruate. This diagnosis is traumatizing for many women who have anticipated bearing children at some point in their lives, which is nearly unattainable with MRKH. Though this syndrome affects approximately one in 4,500 women, MRKH research is scarce, and most people have never heard of it before, including medical professionals (Morcel et al., 2007). It is not an uncommon experience within the MRKH community to be forced to explain what MRKH is when meeting with a medical professional. This and related experiences in the healthcare setting can be re-traumatizing and can lead to healthcare avoidance. The current study investigates the relationship between negative experiences within healthcare settings and subsequent healthcare avoidance. I tested three hypotheses: (1) people with MRKH experience re-traumatization at healthcare appointments, (2) this re-traumatization is a universal experience, not limited to the American healthcare system, and (3) people with MRKH experience more healthcare avoidance than the general population. A sample of 163 participants diagnosed with MRKH responded to an online survey. They named the psychological triggers associated with their diagnosis, rated the emotional impact of specified scenarios that may occur during medical appointments, and reported their levels of healthcare avoidance. Results highlight the ongoing psychological impact of an MRKH diagnosis by demonstrating the relationship between interpersonal interactions during medical appointments and subsequent healthcare avoidance.
Academic department under which the project should be listed
RCHSS - Psychological Science
Primary Investigator (PI) Name
Beth Kirsner
Avoiding Re-Traumatization and Healthcare Avoidance in Women with MRKH Syndrome
Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH) is a congenital disorder among biological females that is characterized by the absence or underdevelopment of the uterus, vagina, and cervix (Laggari et al., 2009). For most women, diagnosis does not occur until adolescence, usually in response to concern about not beginning to menstruate. This diagnosis is traumatizing for many women who have anticipated bearing children at some point in their lives, which is nearly unattainable with MRKH. Though this syndrome affects approximately one in 4,500 women, MRKH research is scarce, and most people have never heard of it before, including medical professionals (Morcel et al., 2007). It is not an uncommon experience within the MRKH community to be forced to explain what MRKH is when meeting with a medical professional. This and related experiences in the healthcare setting can be re-traumatizing and can lead to healthcare avoidance. The current study investigates the relationship between negative experiences within healthcare settings and subsequent healthcare avoidance. I tested three hypotheses: (1) people with MRKH experience re-traumatization at healthcare appointments, (2) this re-traumatization is a universal experience, not limited to the American healthcare system, and (3) people with MRKH experience more healthcare avoidance than the general population. A sample of 163 participants diagnosed with MRKH responded to an online survey. They named the psychological triggers associated with their diagnosis, rated the emotional impact of specified scenarios that may occur during medical appointments, and reported their levels of healthcare avoidance. Results highlight the ongoing psychological impact of an MRKH diagnosis by demonstrating the relationship between interpersonal interactions during medical appointments and subsequent healthcare avoidance.