Improvement of Trauma-Informed Care for Women with MRKH
Disciplines
Child Psychology | Clinical Psychology | Health Psychology | Quality Improvement | Quantitative Psychology
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, most commonly in response to concern for not beginning to menstruate. This diagnosis can be disheartening for many women who have anticipated bearing children at some point in their life, because that is nearly unattainable with MRKH. Though this syndrome affects approximately one in 4,500 women, the research is scarce, and most 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 retraumatizing 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 retraumatization at healthcare appointments, (2) this retraumatization is a universal experience, not limited to the United States’ healthcare system, and (3) people with MRKH experience more healthcare avoidance than the general population. A sample of 163 participants responded to an online survey. Within this survey, participants named the psychological triggers associated with their diagnosis, rated the emotional impact of given scenarios related to the healthcare system, and reported their levels of doctor 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.
Keywords: trauma-informed care, MRKH Syndrome, healthcare avoidance, retraumatization
Academic department under which the project should be listed
Psychological Science
Primary Investigator (PI) Name
Beth Kirsner
Improvement of Trauma-Informed Care for Women with MRKH
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, most commonly in response to concern for not beginning to menstruate. This diagnosis can be disheartening for many women who have anticipated bearing children at some point in their life, because that is nearly unattainable with MRKH. Though this syndrome affects approximately one in 4,500 women, the research is scarce, and most 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 retraumatizing 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 retraumatization at healthcare appointments, (2) this retraumatization is a universal experience, not limited to the United States’ healthcare system, and (3) people with MRKH experience more healthcare avoidance than the general population. A sample of 163 participants responded to an online survey. Within this survey, participants named the psychological triggers associated with their diagnosis, rated the emotional impact of given scenarios related to the healthcare system, and reported their levels of doctor 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.
Keywords: trauma-informed care, MRKH Syndrome, healthcare avoidance, retraumatization