Navigating uncertainty in gender incongruence and differences in sex development (DSD)/intersex conditions

In the care for children/adolescents with gender incongruence or a DSD/intersex
condition, uncertainty is salient. This uncertainty concerns medical,
psychological, ethical and communicative aspects and leads to practical and
moral challenges for healthcare professionals, parents and sometimes for the
children/adolescents themselves.

The present research proposal conerns 1) an interview study, 2) an observation
study on consultations, and 3) an observation study on multidisciplinary
meetings (MDMs) to map out this uncertainty. In the interview study, healthcare
professionals, parents and where possible children/adolescents, and (young)
adults with a DSD/intersex condition are interviewed about their experiences
with uncertainty in healthcare. In the observation study on consultations, it
is investigated how uncertainty manifests in clinical consultations, what the
communicative functions of these manifestations are, and whether/how these
change in the course of the trajectory. In the observation study on MDMs, it is
investigated how uncertainty manifests in multidisciplinary meetings among
healthcare professionals, and what the communicative functions of these
manifestations are. The studies contribute to the provision of support to
healthcare professionals, children/adolescents and their parents in recognizing
and dealing with uncertainty.

The project aims are to 1) provide an integrative understanding and
conceptualization of uncertainty in transgender and DSD/intersex care, and to
2) support children/adolescents, parents and healthcare professionals in
recognizing, discussing and coping with uncertainty. The subgoals that are
central to this research proposal and that contribute to the before mentioned
project aims, are as follows:
1) Interview study: to gain insight in the experiences and reflections of
healthcare professionals, children/adolescents and their parents in transgender
and DSD/intersex care and adults with a DSD/intersex condition;
2) Observation study on consultations: to gain insight in the ways in which
different types of uncertainty manifest in clinical consultations, the
interactional consequences of such manifestations, and the potential changes in
these in the course of a medical trajectory.
3) Observation study on MDMs: to gain insight in the ways in which different
types of uncertainty manifest in multidisciplinary meetings, and the
interactional consequences of such manifestations.

This is a qualitative study on uncertainty in transgender and DSD/intersex
care, consisting of 1) an interview study and 2) an observation study. In the
interview study, four groups are interviewed: 1) healthcare professionals, 2)
(if possible) children/adolescents with gender incongruence or a DSD/intersex
condition, 3) their parents, and 4) adults with a DSD/intersex condition.
Healthcare professionals are interviewed once. To also gain insight into the
development of uncertainty over time, it is valuable to talk with parents and
(if possible) children/adolescents at several timepoints in the medical
trajectory. Parents and children/adolescents can choose to be interviewed once,
twice or three times, ideally with the interviews taking place around a moment
of decision-making about treatment. Unlike the chldren/adolescents with gender
incongruence (over 10 years old), many of the children with a DSD/intersex
condition will often be too young (under the age of 8) to be interviewed. In
order to represent the perspective of people with a DSD/intersex condition,
adults with a DSD/intersex condition are interviewed about uncertainty
regarding the care they have received in the past or regarding the care they
are still receiving.

The observation study on consultations concerns a study on the ways in which
uncertainty manifests itself in interaction. To this end, clinical
consultations, i.e., interactions between healthcare professionals and
children/adolescents/parents, are video-recorded. The consultations will be
analyzed using two research methods: 1) content analysis, which examines which
types of uncertainty emerge in consultations, and 2) Conversation Analysis,
which examines in detail how participants in consultations claim or demonstrate
uncertainty, and what the interactional consequences of these displays are. In
addition, it is investigated whether there is a change in the participants'
displays of uncertainty in the course of a medical trajectory, and if so, what
this change entails.

The observation study on MDMs concerns a study on the ways in which uncertainty
manifests itself in interaction in multidisciplinary meetings. Meetings between
healthcare professionals who work in transgender and/or DSD/intersex care are
recorded and analysed with conversation analysis. It is examined how
participating healthcare professionals claim or demonstrate uncertainty, and
what the interactional consequences of these displays are.

The interviews could be emotionally taxing for some participants, as we invite
them to talk about uncertainty. As a result, there is a risk that they will
experience negative emotions during or after the interview. In addition,
children/adolescents, parents and/or healthcare professionals could experience
the video recording of their consultation and/or MDM as disruptive to their
conversation. However, our experience from previous video observation research
is that people who decide to participate ultimately indicate that they are
hardly aware of the presence of the camera.

The risks described above are, in our estimation based on clinical and research
experience with the same target groups, small and negligible in frequency. The
research team has extensive experience with video observation of consultations
and with interviews with healthcare professionals and patients in which their
experiences with healthcare were discussed. By working together with contact
persons from patient groups and interest groups and with healthcare
professionals who know the population well, we adapt the content of the
interviews to the resilience of the target group. We do our utmost best to make
the content of the interview guideline as little confronting as possible. In
addition, we ensure that potential participants can make a well-considered
decision about whether or not to participate in the study. If during the
participation there are nevertheless participants who experience the interview
as burdensome, they are explicitly given the opportunity to stop their
participation and/or to be referred to psychological help. The researcher can
also discontinue participation if they expect that continued participation may
be harmful to the participants. We therefore expect that the chance that
participation in the study will lead to psychological damage is negligible.

In the observation studies, the burden and risks are minimal compared to the
standard treatment, since this takes place in exactly the same way as it would
take place without the study. The only difference is the presence of a camera,
of which all those involved have been informed and which they have given their
consent to. Lastly, participants have been informed about the possibility to
switch off the camera at any time.

On the other hand, we believe that the research is highly relevant. Uncertainty
plays a major role in this type of healthcare, for healthcare professionals and
parents, and for children/adolescents themselves. In order to be able to
provide for support/tools to help those involved, a better understanding of
current practice is essential. The proposed research will make an important
contribution to this.

For both the interview study and the observation study on consultations,
underage participants are involved. This is related to the research questions,
which concern uncertainty in the care for children and adolescents - this
research can therefore not be conducted without including underage subjects.
However, we take care in various ways (see above) of minimizing risk and burden
as much as possible.