Instruments used to assess gender-affirming healthcare access: a scoping review protocol

Introduction

The World Professional Association of Transgender Health (WPATH) describes the goal of gender-affirming care as partnering with transgender and gender-diverse individuals and working in a holistic manner to address social, mental, and medical health needs (Coleman et al., 2022). This supportive work is often across the lifespan of an individual from youth to older age and includes fostering a space to explore and question gender openly without influence towards a particular intervention (Spencer et al., 2021). Due to the complexity of this work, it is best delivered by staff experienced in gender work, and care should be individually tailored to the individual and their specific needs. Medical interventions may include hormone blockers, cross-sex hormones, and surgical procedures (Coleman et al., 2022).

As our understanding of gender grows, there is a recognition that gender-diverse presentations may be binary or non-binary and either may seek gender-affirming care inclusive of medical and/or surgical interventions. (Monro, 2019; Scandurra et al., 2019). In recent years there has been an unprecedented increase in demand for gender-related healthcare and clinical presentations have changed with an increase in natal females and a decrease in the age of presentation to services (Thompson et al., 2022). Due to the evolving nature of this field of work, continued research is needed to seek to understand the dynamic landscape of gender healthcare.

Currently, gender-related healthcare is typically delivered through either centralised or decentralised models of care (Koehler et al., 2021). Centralised models of care are described as institutions that provide all or most gender-related services at one location or as one team. In contrast, decentralised care is described as care delivered by multiple different autonomous services. In Europe, the term “gender clinics” or “gender identity clinics “ are commonly used to describe centralised services. There is little evidence of preferred models of care and Koehler et al. (2021) detail reasonable pros and cons of both models.

Regardless of the model, the benefits of accessing gender-affirming endocrine care are well documented in adult populations (Hughto & Reisner, 2016). Some studies have claimed these benefits extend to adolescents receiving puberty suppression (de Vries et al., 2011) but researchers note the limitations of this evidence due to the lack of high-quality longitudinal studies in this area (The Cass Review, 2022). Research on outcomes from surgical interventions reports an increase in QoL and improvement in mental health, but again lacks robust longitudinal data (Swan et al., 2022).

This study is particularly interested in exploring access to gender-related healthcare. The study will seek to explore and understand how healthcare is accessed in this population. Various theories have been proposed to explain health-seeking behaviours in this population. Minority Stress has been frequently referenced as a source of social stress, due to stigma and discrimination, that can impair healthcare access and mental health (Hunter et al., 2021). The Gender Affirmation Model has been referenced as a potential protective factor, describing how access can improve when healthcare professionals are known to be affirming and supportive of a person’s gender identity (Hidalgo et al., 2013). The Anderson healthcare utilisation model has been used to describe barriers related to healthcare access in gender-diverse youth that encompass multiple factors, including social stressors (Kearns et al., 2021).

Regarding further protective factors, Resilience and hardiness emerge as critical constructs in understanding the experiences of transgender youth in their healthcare-seeking journey. Despite encountering numerous obstacles and facing high levels of discrimination, transgender youth exhibit remarkable resilience in navigating healthcare systems and accessing gender-affirming care. This resilience is characterised by their ability to adapt, cope, and maintain positive mental health outcomes in the face of adversity. Research by Goldenberg et al. (2020) emphasizes the resilience of transgender youth in their pursuit of healthcare services. The study suggests that stigma and resilience experienced both inside and outside of health care settings can play a role on access to care. In addition, the study found having a positive sense of identity resulted in less difficulties accessing health care.

Furthermore, the concept of hardiness, as proposed by Kobasa (1979), provides further insight into the experiences of transgender youth in healthcare seeking. Hardiness refers to a set of personal qualities including commitment, control, and challenge, which enable individuals to effectively cope with stressful situations. For transgender youth, the commitment to their authentic gender identity, the sense of control over their healthcare decisions, and the willingness to face and overcome challenges are key components of their hardiness.

Prior qualitative systematic reviews have reviewed elements of healthcare access. McCann et al. (2021) examined the psychosocial support needs of transgender and non-binary people highlighting the impact of stigma, discrimination, and marginalisation as well as the importance of formal and informal support systems. Chong et al. (2021) conducted a review of the experiences and perspectives of transgender youth in accessing gender care and discussed systemic barriers and feelings of fear and uncertainty in the context of decision-making for youth and parents.

Transgender youth face unique challenges when it comes to accessing healthcare, which are influenced by several key features. First, stigma and discrimination from healthcare providers can act as significant barriers, resulting in reluctance to seek care, increases in internalised transphobia and compromised healthcare experiences (White Hughto et al., 2015). Second, limited provider knowledge and understanding of transgender health needs can impede access to appropriate and gender-affirming care (Mikulak et al., 2021). Additionally, systemic factors such as lack of insurance coverage, financial constraints, and limited availability of transgender-inclusive healthcare services further exacerbate healthcare access disparities (Puckett et al., 2018). While existing literature has shed light on these features, further exploration is needed to understand the intersectional experiences of transgender youth, including factors such as race, ethnicity, neurodiversity status, socioeconomic status, and geographic location, which may contribute to additional barriers or disparities in accessing healthcare services. Moreover, the impact of a well-supported social transition on healthcare access is underexplored in the literature.

To the best of the authors’ knowledge, no quantitative review of the literature regarding healthcare access has been completed to date. Therefore, the authors propose a scoping review to:

Due to the nature of this research topic, natal sex and gender will be different from one another. For the purposes of reporting, the authors will disaggregate by gender identity and this will be clearly described, where possible.

Methods

This scoping review is informed by methods outlined by Arksey and O’Malley (2005) and includes enhancements by Levac et al. (2010) and the Joanna Briggs Institute (2015). The framework consists of six iterative stages including 1.) identification of the scoping review question, 2.) identifying relevant studies, 3.) selection of eligible studies, 4.) charting the data, and 5.) collating, summarising and reporting of the results, and 6.) consulting with key stakeholders. The research team feels consultation is crucial with populations that are often omitted from research that studies them. The research team will therefore utilise an already-established expert panel to consult with key stakeholders. The expert panel consists of ten young adults who have lived experience of being transgender or non-binary and interfacing with health systems. They have reviewed the research question and will be consulted with throughout the stages below. Lastly, they will help to disseminate the results to community members and key stakeholders.

Conclusion

The results of the scoping review on quantitative instruments used to assess healthcare access will serve as a valuable foundation for a subsequent mixed-method study. The mixed methods study protocol is outlined in more detail in a published paper (Kearns et al., 2022).

By thoroughly examining and synthesising existing quantitative measures, the scoping review will identify gaps, limitations, and areas for improvement in current assessment tools. This comprehensive understanding, alongside a qualitative investigation findings will inform the design of a new quantitative questionnaire that aims to be more comprehensive in capturing the nuances of healthcare access for young transgender and non-binary people in the Irish context.

The mixed-method study, utilising the newly developed questionnaire, holds several benefits for young people and their parents. Firstly, it will provide a more accurate and comprehensive assessment of healthcare access experiences, allowing for a deeper understanding of the challenges and barriers faced by this population. The questionnaire's improved design will enable a more nuanced exploration of factors such as affordability, availability, provider attitudes, and cultural competence, thus capturing the multifaceted nature of healthcare access.

Overall, the mixed-method study, informed by the results of the scoping review, aims to develop a more comprehensive and context-specific quantitative questionnaire. By combining quantitative data with qualitative insights, this research endeavor will contribute to a deeper understanding of healthcare access challenges, promote tailored interventions, and ultimately improve the healthcare experiences and outcomes for young people and their parents in Ireland.

Study status

This study is at Stage 2 – a preliminary search of the literature has been conducted and the software packages Mendeley and Rayyan have been trialled.