Although the dominant discourse creates expectations that trans people will follow a linear set of interventions to transition ‘from’ one gender ‘to’ another, the reality is complex and subjective, involving a range of possibilities and processes. Translating gender identities into medical choices, and communicating these choices to healthcare professionals, is a complicated task. This research aims to explore the intersections between identity, health, information-seeking and decision-making for trans people. Using narrative inquiry and assisted in my interpretations by information science, this thesis will use narratives to explore how trans people actively shape their understanding and articulation of their healthcare needs.
Rationale for researching trans people’s decision-making practices and information needs
Sociological research has helped to explore the ways in which our social lives impact on our interpretations of what it means to require medical treatment and our access to the healthcare system. Understanding how people make decisions about their health is key to effective medical practice and policy making.
The literature on decision-making in health tends to focus on how patients and doctors discuss and decide on which course of treatment is most suitable, isolating the act of decision-making to a single clinical encounter. In reality, navigating the healthcare system is always a complex journey. It necessitates consulting a combination of healthcare professionals, information resources, friends and family, at different times and in different ways for different purposes.
Rapley is among authors who have called for attempts to broaden out the analysis of decision-making, urging more researchers to unpick the distributed nature of decision-making. His research indicates that patients and medical professionals do considerable amounts of work outside of the consultation to make decisions:
‘Decision making is an ongoing event that often evolves over multiple encounters […] never just a solo, cognitive activity but rather […] initiated, sustained and transformed over a range of encounters with both people and technologies’ (Rapley 2008, p.429).
As well as decision-making evolving over a series of social encounters, which are messy and non-linear, information seeking and decisions about health are highly emotional. Emotion, affect and sentiments shape our understanding of the world, and inform our behaviour. Feelings themselves can inform choices, as feelings are often considered constituted information by the decision-maker (Schwarz 2012). Although no one exists outside of their social context, the dialectic between a person’s inner life or ‘cognitive space’ and the social/organisational environment in which their decisions are made provides fertile ground for interdisciplinary understandings of decision-making for health (Ingwersen 1996).
This research project aims to provide what Geertz termed ‘thick description’ of the experience of decision-making and information seeking in a community of trans people in England (Geertz 1973). Decision-making, used in this context, does not just mean treatment decisions, but decisions about whether to access healthcare, when, who from, where, and why. It aims to explore how people tell the story of their decision-making and information-seeking practices, both through contact with the healthcare system and informally through peer-to-peer advice, self-help and social support.
Being trans is associated with a distancing of oneself from the gender assigned at birth. The incongruence between societal expectations and an individual’s sense of their own gender causes in some feelings of distress and discomfort, which medical institutions term Gender Dysphoria. This is addressed through medical interventions such as hormones and reconstructive surgery. Whilst these medical interventions are provided relatively quickly for those with the ability to pay for private healthcare, people that rely on insurance or national healthcare systems may face a lengthy process of diagnosis and treatment, involving primary care practitioners, psychiatrists, endocrinologists, surgeons and other medical professionals.
In all cases of medical intervention, the patient is expected to make complex decisions about what will relieve their sense of bodily incongruence. Whilst many medical inventions aim to achieve a gender ‘transition’ (often labelled male-to-female or female-to-male), this linear approach to care is not what every patient is seeking. Some trans people do not feel their identity fits within a binary gender category, whilst others may not regard specific body parts as incongruent with their sense of gender whilst still wishing to change others. Not all trans people desire medical intervention at all, despite a pervasive discourse that expects them to change their physical characteristics to fit societal expectations of gender. Patients must pilot these complex decisions around the best course of treatment, translating very personal experiences into medical recommendations.
Emotional responses, whether about one’s own gender/healthcare needs or to seeking help from medical professionals, is key to trans healthcare experience. Good practice from the trans patient perspective often centres around feeling respected, feeling validated, feeling like they are not objectified (McNeil et al. 2013). Research on patient experience for this group often uncritically highlights areas where trans people are unhappy with healthcare without unpacking and exploring with any granularity what caused this emotional response or how it might impact a person’s longitudinal healthcare journey.
Research on trans healthcare has also flagged up perceived issues in the doctor-patient relationship. Trans people feel they shoulder the burden of educating healthcare professionals about their healthcare needs (Bauer et al. 2009; NHS England Specialised Commissioning 2015). This suggests that there are gaps in information provision and a high level of community organising to fill these gaps. There is also an assumption in the literature that trans people will already be informed of their healthcare options and desires for treatment before their discussion with professionals, positioning the healthcare professional’s role as ensuring that the patient fits the diagnostic categories, has no counterindications to treatment and managing patient’s expectations (NHS 2013; Hembree et al. 2009; General Medical Council 2017; Coleman et al. 2012). What is not known is how trans people explore the options and desires for treatment outside of their discussions with professionals, or decide how to communicate these desires. The trans patient experience has been described as shaped by anticipation: trans people who seek treatment from gender specific services often spend a long time waiting for their healthcare needs to be met (Pearce 2016). During this wait, we can assume trans people are actively shaping and deciding how to articulate their healthcare needs, but how this active decision-making takes place has not been documented. Therefore, this thesis aims to understand trans people’s ‘cognitive space’ as a window onto their information needs and practices in the social/organisational environment of the English healthcare system.
The problem space outlined above has lead me to ask the following questions:
- How have my participants come to understand whether or not they need medical intervention for gender dysphoria?
- How have my participants decided on which medical inventions, if any, were necessary for them?
- How do trans people’s healthcare experiences inform their decision-making around health?
- What information are trans people seeking about their health? Where from? Who are trans people seeking this information from, and why?
How do trans people manage their health during the long wait for appointments?
This project is conducted from a constructivist epistemological standpoint, reflecting my belief that an individual’s understanding of the world is co-created through human thought, emotion and assumption. Whilst there is an independent reality, people make sense of this reality collectively, in relation to individual experiences. This sense-making is culturally and historically contingent. As such, there can be a plurality of personal realities relating to the actual, phenomenological world. It is also positioned as part of the ‘affective turn’ and feminist research, placing value on participant’s emotional experiences and subjectivities and the relational nature of research.
The tool used to explore the research questions outlined above will primarily be narrative inquiry. Information Sciences and theories of cognitive information retrieval will also provide insight in the analysis of the data. As McNay observes, ‘meaning is not inherent to action but is the product of interpretative strategies amongst which narrative is central’ (McNay 2000, p.95). The interest that both methods have in making plain how the inner life of the participant informs their interpretation of an event and their likelihood for future action means they are well placed to explore the intersections of identity, decision-making and information seeking.
Narrative methods hold that ‘it is through our own narratives that we principally construct a version of ourselves in the world and it is through its narrative that a culture provides modes of identity and agency to its members’ (Bruner 1996, p.15). These narratives have their foundation in the socio-historical context and provide a template by which we understand our experiences, providing ‘the heuristic linkage between the psychological ‘inner’ world of the learner with the external world of society and culture’ (Stephens and Trahar, in Cowie et al. 2012, pg.60).
Likewise, cognitive information retrieval holds that individual actors have ‘world models’ which are ‘highly dynamic and interchangeable cognitive structures’ which ‘controls the perception and further processing of external input’. Further, as in narrative inquiry, ‘the individual cognitive space and, in particular, the current cognitive/emotional structures and states are determined by the experiences gained through time in a social and historical context.’ (Ingwersen 1996, p.6). The desire for information is informed by these cognitive process (Ingwersen 1996, p.16). Therefore using narrative inquiry to explore how information needs are formed and inform decisions appears promising.
Narrative inquiry requires that analysis occurs in tandem with data collection, as the act of interpretation and meaning-making itself is an act of analysis. Beyond this initial, responsive analysis, I will also conduct an in-depth thematic analysis of participant’s narratives.
I am committed to using my research to benefit the trans community in whatever modest way it can. This research may highlight gaps in information provided to trans people seeking medical care, showing where additional support may be required to assist trans people in making difficult, lifechanging decisions. In this way, this research hopes to deepen understanding of the medical needs of this group.
By creating ‘thick description’ of how feelings of dissatisfaction are created and negotiated, as well as emphasising what successful interactions and relationships between trans people and their HCPs might look like, recommendations for additional training and best practice from healthcare professionals may also be an outcome of this research.
Further, it is hoped this research will also make academic contributions. The field of information science more often seeks to build generalised theory. By paying attention to the practices of a marginalised group, theories of information retrieval may be tested, expanded or made more inclusive. Whilst sociology regularly explores the intersections between power, identity, and illness, perhaps the results of these narrative explorations will also yield novel findings for this field.
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