Trans Healthcare Access in Mass

Discussion

The purpose of this study was to identify how transgender adults in Massachusetts are navigating the existing healthcare system to access medical care. Through the process of interviewing the study participants and analyzing the resulting data, several answers have been generated which answer this question. Namely, an access model was created which outlines the method of identifying a new primary care provider (see Figure 1).

Primary Care Access Model

Internal and External Motivators

Developing the care access model. The common methods of identifying and establishing care with a new trans-knowledgeable provider was one of the earliest themes identified. Awareness of how trans patients are ultimately connecting with PCP’s is a key to delivering life-saving preventative care to a marginalized and underserved population. As noted above, longer relationships with a PCP reduce the reliance on methods of care access which are more likely to result in a negative experience such as emergency rooms and urgent care centers (Grant, et al, 2011; James, et al., 2016). Medical providers who are seeking to increase patient census of trans individuals have the opportunity to make changes to public facing policies, marketing materials and strategies, signage, and make improvements to the training and trans-knowledgeability of first line points of contact such as receptionists, billers, schedulers, and security personnel.

As of 2016, approximately 33% of trans patients receiving transition-related medical care did so through the use of a specialist outside of their routine healthcare provider, typically a PCP (James, et al., 2016). However, also in 2016, 51% of trans patients received both their transition-related medical care as well as their routine healthcare from their routine healthcare provider or PCP (James, et al., 2016). With the qualitative data reviewed along with the literature, there seems to be significant opportunity to streamline healthcare opportunities and protocols by combining the offering of transition related medical care within the offices and services provided by primary care physicians.

Experiencing Safety and Comfort Accessing Healthcare and Healthcare as a Privilege

The researcher asked participants to discuss their most challenging experience accessing medical care, which resulted in themes which illuminated the interlinking nature of experiencing safety and comfort for trans individuals accessing healthcare. Participants reported feeling grateful for the minimally negative experiences that they had endured compared to their awareness of both observed and stereotypically expected negative experiences of trans-identified individuals accessing healthcare. The fears disclosed by participants are not unfounded, as the NCTE studies from 2011 and 2016 consistently show high rates of discrimination and refusal of care across multiple healthcare environments (Grant, et al, 2011; James, et al., 2016) The 2016 study by the National Center for Transgender Equality found that of the participants who had been seen by a medical provider within the last year, 33% reported “at least one negative experience with a doctor or other health care provider related to being transgender (James, et al., 2016).” Among other experiences reported by participants, the 2016 NCTE study found that 24% of respondents were obligated to teach or educate their medical provider in order to receive appropriate care, with 15% reporting invasive or unnecessary questions about their identity unrelated to the medical visit , and a further 8% indicating care or treatment refusal related to their identity or gender presentation (James, et al., 2016)

Given the fact that trans individuals who are medically transitioning through the use of hormone therapy are obligated to remain in ongoing contact with a medical provider in order to safely and legally transition, this is a concerning status quo and subconscious power dynamic with wide ranging possible consequences. The results generated from this study affirmed that trans patients experience safety and comfort as being intertwined. The fears discussed by participants were not related or limited to being assaulted per se but were focused on the internal emotional and physiological experiences of suffering through dysphoria as a result of accessing medical care. For many participants, the suffering of dysphoria is judged to be more impactful than delaying routine or even urgent medical care, unless it absolutely cannot be avoided. In 2016, the NCTE reported that 23% of its respondents had elected not to seek necessary medical treatment due to the fear of mistreatment related to their gender identity or presentation (James, et al., 2016). Further quantitative study into gender dysphoria and its involvement with medical care is strongly recommended, especially into the delay of preventative and routine care for sexual and reproductive health amongst trans-masculine individuals.

The study identified that participants commonly expressed themselves as lucky or fortunate to receive respectful medical care. Given that the NCTE 2016 Transgender Survey found that 33% of trans individuals experienced at least one negative experience while seeking medical care, with 2% of individuals reporting instances of assault in a medical setting related to their identity as a transgender person (James, et al., 2016), it is not difficult to understand why there is such a pervasive belief that accessing medical care will be at the very least, uncomfortable, unpleasant, and mentally and emotionally distressing. Further investigation into how the healthcare system can ease dysphoria through medical transition is needed, which includes consideration into the legal and medical nature of transition as both separate and combined entities. When considering the long-term impact of traumatic negative experiences endured by trans individuals seeking healthcare, as well as the widespread belief that these experiences are to be expected and endured, there is a concerning unknown for an already vulnerable population.

Providers looking to become more intentionally inclusive would benefit from connecting with trans focused healthcare providers like Fenway Health, to request support and guidance on developing policies and procedures to effectively support trans patients to access PCP services. This recommendation holds especially true for pediatric medical providers, who have a unique opportunity to foster relationships with trans-knowledgeable providers to create a warm hand off and ensure that trans patients do not feel rejected or as though their needs cannot be met within their existing pediatric practice. In a macro lens, respondents to the NCTE surveys in both 2011 and 2016 cited cost as being the most significant barrier to medical care (Grant, et al, 2011; James, et al., 2016), for our participants geographic limitation was significantly more impactful, however the cost of transportation and travel related expenses was also brought up. Considering how to better provide trans-knowledgeable care throughout all of Massachusetts should be a legislative and healthcare policy priority. The NCTE found that trans patients were “three times more likely to have to travel more than 50 miles for transgender-related care than for routine care (James, et al., 2016) which was observed in the data collected and analyzed to answer the research question posed. Research and policy initiatives focused on the transportation barriers for trans individuals in Western and Southeastern Massachusetts as it pertains to accessing trans-knowledgeable healthcare would likely help to determine where there are large regional gaps in care access for trans patients of all ages.

Limitations

The study interviews resulted in a wealth of data, however there were some limitations and areas of opportunity which are relevant to the results. Inherently, the use of a convenience and snowball sample recruiting method from an often isolated and disenfranchised population results in a sample of individuals that is somewhat influenced by the geographic reach and cultural access of the research team.

The primary limitation of this study was the sample size (n=8). The research team recruited individuals with a goal of 10 participants, using a combination of in person and electronic recruiting contact, from convenience and snowball samples. The resulting population is not sufficient to reach saturation of grounded theory data (Aldiabat and Le Navenec, 2018).

In addition, no participants of color were represented, which is a significant limiting factor as there is even less qualitative research data available on the experiences of people of color. According to the NCTE studies, people of color experience higher rates of discrimination, assault, and refusal of care (James, et al., 2016) further suggesting the need for more intensive study into the experiences of transgender people of color accessing medical care.

An additional limitation on the study was the low participation from trans-feminine individuals, which is relevant to studies regarding experiences accessing healthcare, as the NCTE has found significant variety in the types and magnitude of negative experiences had while accessing healthcare as a trans individual when compared between trans men, women and non-binary individuals(Grant, et al, 2011; James, et al., 2016).