Horizon CDT Research Highlights

Research Highlights

An ethnography of trans people’s distributed decision-making practices in relation to healthcare in a digitally enabled context

  Kate Arnold (2014 cohort)   katelarnold.com

Sociological research has helped to explore the ways in which our social lives impact our interpretations of what it means to be healthy 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. The preoccupation with the doctor-patient relationship has sparked a series of studies on shared decision-making and other patient-centred decision-making models.

Whilst the importance of this research should not be undermined, it has led to the over-emphasis of a particular moment in the process of seeking clinical intervention. 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 in order 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 2007, pg. 429).

Current healthcare communication models have tended to isolate decision-making to the clinical encounter between one medical professional and their patient. They attempt to fit the decision-making process into discrete categories, and fail to reflect social reality, which is messy and non-linear.

This research project aims to provide what Geertz termed ‘thick description’ of decision-making in action. 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. Utilising the ethnographic method, this research aims to take a holistic view on how decisions are taken whether to pursue healthcare interventions, both formally (through contact with the healthcare system) and informally (through peer-to-peer advice, self-help and social support).

The participant group that will be the focus of this ethnography are trans people. Trans is an umbrella term encompassing a diverse group of people whose ‘gender identity or expression diverts from prevailing societal expectations’ (Bauer et al. 2009, pg. 348). This can include transgender, transsexual, transvestite, genderqueer, non-binary identified, two spirit and other gender non-conforming identities.

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 psychiatry has labelled ‘gender dysphoria’, which is often treated 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.

Patients and healthcare professionals must navigate these complex decisions around the best course of treatment, translating very personal experiences into medical recommendations. Medical professionals must manage decisions to strike a balance between respecting the patient’s wishes, the restrictions of a rationalised healthcare system, and their own expert knowledge.

Of course, many trans people do not feel any distress or discomfort with their bodies, and would not wish to seek any kind of medical intervention in relation to their gender identity. However, it is likely that every trans person, at some point in their lives, will wish to access formal healthcare services, and many find that these services are not adequately equipped to care for people who do not fit the expected binary, static, gender categories. Concerns about whether to disclose their trans status and how they will be treated if they do, combined with a lack of provision for those that identify as neither male nor female, are all factors that make decisions about accessing formal care more complex for trans people as a group.

These concerns could be said to stem from a lack of ‘cultural competency’ within formal healthcare systems (Roehr 2015). Baer et al. suggest that assumptions about gender that proliferate society produce an erasure of trans people from the medical establishment via informational erasure and institutional erasure (Bauer et al 2009). Data from their study suggested that this causes the informational burden to fall more heavily on the trans individual seeking care- sometimes leading to the need for them to educate the very medical professionals they have gone to for specialist advice (Bauer et al 2009, pg. 356).

This adds another dimension to the decision-making process. If trans people are systematically erased from the medical establishment, what resources are they mobilising for support, and to provide the additional information that the healthcare services need? How do trans people chose which services to access so as to minimise the potential for discrimination or ignorance? If information is not readily available through the formal healthcare service, where and what kind of information are trans people accessing to make decisions about their health, given their particular circumstances?

Given the growth in the use of digital technologies for information seeking, it is likely that answers will be sought in the virtual world. My review of the literature so far indicates extensive use of digital technology by trans communities for healthcare, information and social support (e.g. Hill 2005, Raun 2015, Haimson 2015a, 2015b).

Although it is widely accepted that digital technologies are playing an increasingly central role in how we manage our health, fewer studies have tried to trace the effects of our activities online into the actions we take offline. In line with Christine Hine and the material turn more broadly, I view the internet as an ‘embedded, embodied and everyday’ feature of the social world (2015).

The highly personal, complex, and statistically infrequent situation of trans people makes for a rich environment in which to study how healthcare decisions are made. It is hoped that this research will provide a deeper understanding of the realities of managing health in the modern, digitally enabled British setting, allowing for a contextualisation of the clinical encounter as one point of many in a healthcare journey. It will also contribute to the growing body of literature exploring the impact of online behaviour on identity and actions taken offline.


  1. Bauer, G. R., Hammond, R. H., Travers, R. Kaay, M., Hohenadel, K. M., Boyce, M. (2009) ‘‘I Don’t Think This Is Theoretical; This Is Our Lives’’: How Erasure Impacts Health Care for Transgender People” in Journal of the Association of Nurses in AIDS care, 20:5 pp.348-361, doi=10.1016/j.jana.2009.07.004
  2. Geertz, C. (1973) The Interpretation of Cultures Basic Books: New York
  3. Haimson, O. L., Brubaker, J. R., Dombrowski, L. Hayes, G. R. (2015a) Disclosure, Stress and Support During Gender Transition on Facebook, Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing, pp. 1176-1190
  4. Haimson, O. L., Bowser, A. E., Melcer, E. F., Churchill E. F. (2015b) Online Inspiration and Exploration for Identity Reinvention, CHI 2015, April 18 - 23 2015, Seoul, Republic of Korea
  5. Hill, D. B. (2005) Coming to terms: using technology to know identity, Sexuality and Culture, 9:3, pp. 24-52
  6. Hine, C. (2015). Ethnography for the Internet: Embedded, Embodied and Everyday. Bloomsbury Academic.
  7. Rapley, T. (2007) Distributed decision making: the anatomy of decisions-in-action, Sociology of Health & Illness, 30:3, pp. 429-444
  8. Raun, T. (2015) Video blogging as a vehicle of transformation: Exploring the intersection between trans identity and information technology International Journal of Cultural Studies 2014, 18:3 pp.1–14
  9. Roehr, B. (2015) Comfortable in their bodies: the rise of transgender care. BMJ (Clinical Research Ed.), doi=http://doi.org/10.1136/bmj.h3083

This author is supported by the Horizon Centre for Doctoral Training at the University of Nottingham (RCUK Grant No. EP/L015463/1) and The Nottingham University Hospitals Trust.