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Understanding Transgender and Gender Diverse Youth's Experiences Receiving Care via Telemedicine: A Qualitative Study

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Abstract and Figures

Background: Access to virtual care has increased since the beginning of the COVID-19 pandemic, yet little is known about transgender and gender diverse (TGD) youth's experiences and perspectives on receiving care via telemedicine. Objective: The purpose of this study was to explore these experiences to 1) inform necessary changes to the provision of pediatric gender-affirming care and 2) help providers and health systems determine if and how telemedicine should be made available post-pandemic. Methods: Youth (14-17) who completed a telemedicine visit in the Seattle Children's Gender Clinic were invited to participate in a semi-structured interview exploring perceived advantages/disadvantages of telemedicine and preferred visit modalities. Interview transcriptions were analyzed by two research team members using an inductive thematic analysis framework. Results: Fifteen TGD youth completed an interview. Commonly cited advantages of telemedicine were convenience and comfort with having visits in their own environments. Reported disadvantages included technical issues, discomfort with the impersonal nature, lack of familiarity with the platform, and privacy concerns. Overall, slightly more youth preferred in-person visits over telemedicine, referencing both specific characteristics of the clinical visit (i.e., initial vs. return, complexity) and proximity to the clinic as reasons for this preference. Although a plurality of TGD youth preferred in-person visits, they also recognized the value of telemedicine and the impact it may have in facilitating access to care. Conclusions: Given variations in needs and visit complexity, our study supports the provision of both in-person and telemedicine modalities as options for pediatric gender-affirming care.
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Original Paper
Understanding Transgender and Gender-Diverse Youth’s
Experiences Receiving Care via Telemedicine: Qualitative
Interview Study
Nicole F Kahn1,2,3, PhD, MEd; Yomna H Anan3, BA; Kevin M Bocek2, BA; Dimitri A Christakis1,3, MD, MPH; Laura
P Richardson1,2,3, MD, MPH; Wanda Pratt4, PhD; Gina M Sequeira1,2,3, MD, MS
1Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, United States
2Division of Adolescent Medicine, Seattle Children's Hospital, Seattle, WA, United States
3Center for Child Health, Behavior and Development, Seattle Children's Research Institute, Seattle, WA, United States
4The Information School, University of Washington, Seattle, WA, United States
Corresponding Author:
Nicole F Kahn, PhD, MEd
Center for Child Health, Behavior and Development
Seattle Children's Research Institute
1920 Terry Ave
Seattle, WA, 98101
United States
Phone: 1 206 987 0988
Email: nicole.kahn@seattlechildrens.org
Abstract
Background: Access to virtual care has increased since the beginning of the COVID-19 pandemic, yet little is known about
transgender and gender-diverse (TGD) youth’s experiences and perspectives on receiving care via telemedicine.
Objective: The purpose of this study was to explore these experiences to (1) inform necessary changes to the provision of
pediatric gender-affirming care and (2) help providers and health systems determine if and how telemedicine should be made
available post pandemic.
Methods: Youth (aged 14-17 years) who completed a telemedicine visit in the Seattle Children’s Gender Clinic were invited
to participate in a semistructured interview exploring perceived advantages or disadvantages of telemedicine and preferred visit
modalities. Interview transcriptions were analyzed by 2 research team members using an inductive thematic analysis framework.
Results: A total of 15 TGD youth completed an interview. Commonly cited advantages of telemedicine were convenience and
comfort with having visits in their own environments. Reported disadvantages included technical issues, discomfort with the
impersonal nature, lack of familiarity with the platform, and privacy concerns. Overall, slightly more youth preferred in-person
visits over telemedicine, referencing both specific characteristics of the clinical visit (ie, initial vs return and complexity) and
proximity to the clinic as reasons for this preference. Although a plurality of TGD youth preferred in-person visits, they also
recognized the value of telemedicine and the impact it may have in facilitating access to care.
Conclusions: Given the variations in needs and visit complexity, our study supports the provision of both in-person and
telemedicine modalities as options for pediatric gender-affirming care.
(JMIR Pediatr Parent 2023;6:e42378) doi: 10.2196/42378
KEYWORDS
transgender and gender diverse youth; adolescent; telemedicine; gender-affirming care; qualitative methods; COVID-19; pandemic;
youth; gender; care; technical; implementation; transgender; telemedicine; gender diverse; complexity
Introduction
Telemedicine provides a means for 2-way, real-time,
synchronous communication between a health care provider
and a patient, who are not in the same physical location, using
audio or video technology [1]. Although telemedicine has been
available for a number of years, it has primarily been used to
support populations who experience geographic barriers to
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specialty health care (eg, rural settings and health professional
shortage areas) [1]. However, the COVID-19 pandemic has
recently forced health care systems to rapidly implement or
scale up the availability of telemedicine visits to continue
serving patients, resulting in increased focus on optimizing these
platforms for broader use [2,3].
Even before the pandemic, work was in progress to expand
telemedicine for the provision of subspecialty care to other
vulnerable populations, including children and youth [4]. This
was also true for transgender and gender-diverse (TGD) youth
seeking access to gender-affirming care, which may include
social or psychological supports and medical care that affirms
an individual’s gender identity. Telemedicine represented an
important mode of care delivery for TGD youth, given that
many experience substantial barriers to receiving
gender-affirming care due to the limited number of clinics across
the United States that deliver this care and the fact that few
providers outside of these clinics have received formal training
in this area [5-7]. However, few guidelines were in place for
the provision of these services [3], and little research had been
conducted regarding youth’s needs and preferences with this
modality of care delivery [8,9].
More recent research during the pandemic with a nationally
representative sample of youth has shown that young people
see value in telemedicine for minor concerns or follow-up care,
but that most still prefer in-person visits [10]. Similarly, research
conducted before the pandemic showed that just under half
(47%) of TGD youth were interested in telemedicine, but they,
too, preferred to use this modality for follow-up care [9,11,12].
However, telemedicine interest was especially high among TGD
youth who had less parental support for their identities [11].
Such unique experiences illustrate the importance of
understanding diverse patient perspectives as health care systems
make decisions about whether and how to provide telemedicine
services moving forward. As such, now that telemedicine
services are more widespread, more research is needed to
understand TGD youth’s perspectives on receiving
gender-affirming care via telemedicine and whether this could
be a way to improve access and help overcome the unique
barriers to care faced by this population [5,6,13].
Therefore, the purpose of this study was to further explore TGD
youth’s experiences receiving gender-affirming care via
telemedicine, with the broader goals of (1) informing necessary
changes to the provision of pediatric gender-affirming care and
(2) helping gender-affirming care providers and health systems
determine if and how this modality should continue to be made
available following the COVID-19 pandemic.
Methods
Participants and Recruitment
Youth aged 14-17 years who completed a telemedicine visit
with a Seattle Children’s Gender Clinic physician or nurse
practitioner to discuss or receive gender-affirming medical care
within the last 6 months were invited to complete a screening
survey, and if eligible, to participate in a semistructured,
one-on-one Zoom interview. For the purpose of this study, the
term “telemedicine” was defined as any visit that occurred using
real-time video and audio technology from a location outside
of the clinic.
For initial recruitment, members of the research team reviewed
electronic medical records to identify patients who met initial
inclusion criteria to contact by email or during an in-person
visit to the clinic. All prospective participants were directed to
a Research Electronic Data Capture (REDCap) [14] screening
survey to determine eligibility and to provide additional
information about the study. Eligible participants were then
contacted by a member of the research team to schedule an
interview over Zoom [15].
Ethics Approval
Due to the low-risk nature of this study and to avoid excluding
participants who may not have disclosed their gender identity
to a parent, a waiver of parental consent was granted by the
Seattle Children’s Hospital Institutional Review Board
(STUDY00002873), and all participants provided verbal assent
to participate prior to the start of the interview. Each interview
participant received a US $20 Amazon e-gift card. All study
procedures were approved by the Seattle Children’s Institutional
Review Board.
Measures
Screening Survey
Demographic information regarding age, gender identity,
ethnicity, and race were self-reported on the REDCap screening
survey.
For gender identity, respondents could select all that applied
from the following: transmale or transmasculine, transfemale
or transfeminine, nonbinary, genderqueer, genderfluid, gender
questioning, gender nonconforming, agender, demigender,
gender variant, androgyne, two spirit (or other identity of
indigenous origin), cisgender male, cisgender female, and other.
Respondents were also asked about travel time to the clinic,
how supportive their most supportive parent or legal guardian
was of their transition on a scale from 1 to 10, and whether a
parent had participated in their telemedicine visit with the gender
clinic.
Interview
The first part of the semistructured interview included
open-ended questions related to participants’ experiences
receiving gender-affirming care via telemedicine. The second
half of the interview focused on their attitudes toward receiving
gender-affirming care in the primary care setting. This paper
focuses on the first half of the interview, which asked the
following open-ended questions:
“How did you feel about doing a gender clinic visit using
telemedicine?”
“Were there particular aspects of the telemedicine visit you
liked or didn't like? Why?”
“If you had the option of doing a visit over telemedicine vs
in-person, what would you choose and why?”
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Interview questions were reviewed by members of a TGD youth
advisory board for clarity and applicability prior to
implementation.
Analyses
Interview transcripts were automatically generated by the Zoom
computer program [15] and reviewed by members of the
research team for clarity and accuracy. Transcripts were then
analyzed by 2 members of the research team using an inductive
thematic analysis framework [16] and Dedoose qualitative
analysis software (SocioCultural Research Consultants) [17].
Specifically, 2 members of the research team (“coders”) used
an initial codebook that was generated collaboratively with
TGD youth, parent, and primary care provider stakeholders to
analyze the data. The coders then met weekly to discuss
disagreements and to add codes iteratively as other key themes
emerged from the interviews until thematic saturation was
achieved. The final results were triangulated with members of
a TGD youth advisory board who were provided with a list of
themes and examples to ensure they agreed with the quote
categorizations.
Results
Participant Characteristics
Of the 45 TGD youth who completed the screening survey, 29
(64%) were deemed eligible and invited for an interview, of
which 15 (52%) agreed to participate (Table 1). The mean age
of interview participants was 15.7 years (SD 1.1). The majority
(n=11, 73%) identified as transmale or transmasculine, and
one-third (n=5, 33%) selected more than one gender identity
(range: 1-8). Most of the interviewed youth (n=12, 80%)
completed their first gender-clinic visit in person, while 3 (20%)
youth had completed their first gender-clinic visit via
telemedicine. Nearly all of the interviewed TGD youth lived
within an hour from the clinic (n=14, 93%). Overall, youth
indicated high levels of support for their transition from a parent
(mean 8.5, SD 1.9), and 12 (80%) youth had a parent join for
a telemedicine visit. Interviews ranged in length from 20 to 45
minutes.
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Table 1. Demographic characteristics of screening survey and interview participants.
Interviewed (n=15)Screened (n=45)Variables
15.7 (1.1)16.2 (1.2)Age (years), mean (SD)
Gender identitya, n (%)
11 (73.3)30 (62.5)Transmale or male
3 (20.0)11 (22.9)Transfemale or female
6 (40.0)14 (29.2)Nonbinary
3 (20.0)5 (10.4)Genderqueer
2 (13.3)2 (4.2)Genderfluid
0 (0.0)0 (0.0)Gender questioning
3 (20.0)3 (6.3)Gender nonconforming
1 (6.7)4 (8.3)Agender
2 (13.3)4 (8.3)Demigender
1 (6.7)1 (2.1)Gender variant
0 (0.0)0 (0.0)Androgyne
0 (0.0)1 (2.1)Two spirit (or other identity of indigenous origin)
0 (0.0)0 (0.0)Cismale
0 (0.0)0 (0.0)Cisfemale
1 (6.7)2 (4.2)Bigender
5 (33.3)15 (33.3)>1 gender identity (range: 1-8)
Ethnicity or racea, n (%)
2 (13.3)9 (18.8)Hispanic
0 (0.0)2 (4.2)American Indian or Alaska Native
2 (13.3)5 (10.4)Asian
1 (6.7)3 (6.3)Black or African American
1 (6.7)2 (4.2)Native Hawaiian or Pacific Islander
13 (86.7)37 (77.1)White
Distance to clinic, n (%)
5 (33.3)10 (20.8)30 minutes
9 (60.0)25 (52.1)31 minutes to 1 hour
0 (0.0)4 (8.3)1 to 2 hours
0 (0.0)0 (0.0)2 to 3 hours
1 (6.7)2 (4.2)3 to 4 hours
0 (0.0)2 (4.2)>4 hours
First visit, n (%)
12 (80.0)29 (60.4)In person
3 (20.0)14 (29.2)Telemedicine
8.5 (1.9)8.2 (2.1)Parental support for transition (mean; 1-10)
12 (80.0)38 (79.2)Parent at telemedicine visit, n (%)
aYouth could select more than one gender identity and ethnicity or race.
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Advantages and Disadvantages of Telemedicine
Modality for Gender-Affirming Care Key themes of the TGD youth’s responses regarding the aspects
that they liked and disliked about telemedicine with
representative quotes are shown in Table 2.
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Table 2. Advantages and disadvantages of telemedicine for gender-affirming care (n=15).
QuotationsThemes and subthemes
Advantages
Convenience (n=13, 87%)
Travel time “I do like that it's more convenient. Like you just don't have to, like, drive out or get your parents to drive
you out to a specific location.
“I especially appreciated that for very short check-in visits. That was, like, super easy to do via
telemedicine. That would have taken up a big portion of my day if we'd had to drive down.
Efficiency “There is also no wait time. I had some long waiting in the office times with the gender clinic. But with
telemedicine, it’s just like, you log on and they're right there. So, it's very, very efficient.
“I think for like just checkups and stuff and general symptoms it's good for telehealth because you can
just call and make it happen instead of having to drive over.
User-friendly “It's very like easy to use the telemedicine videos like you can, like it's very like easy to learn like it's not
really complicated like you can just, press on the Zoom link and then go on and then, if you have to put
your password or your name you just click enter and then and it's super reliable too, so I like it.
“Telemedicine is easy, you can do it at your house, in your bed, you don't really have to do much, you
just tap a few buttons.
Comfort (n=10, 67%)
Own environment “Well, I mean it's nice to do visits from my house. It's like being in my home is a little bit more comforting
because you know, when I go to [CLINIC NAME] I'm in a hospital.
“Um, for me, it's mostly the environment around me because when I'm actually in clinic it doesn't really
have that same feeling that at home it does, cuz that’s home…it's home. But the clinic, it feels like there's
a bunch of doctors and nurses and it just doesn't have that same comfort that it would be at home.
Social anxiety “It might be scary you're going to in person, because they've never had to, cause gender is, like a really
touchy subject and, like it can be a little bit uncomfortable sometimes, so I think having the screen in
between can sometimes make it a little bit less scary.
“For me, especially back then, before I started hormones, I was a very socially anxious person. So, it’s
always a little daunting going in and sitting face to face with somebody for an hour and you’re just
looking at a doctor and I feel like through telemedicine it kind of broke that weird barrier there. Like I
wasn't as anxious going into it and it was a really good introduction into my care there.
Avoiding COVID-19 “Personally, I like it just because like especially right now, because, like COVID and, like the delta
variant and all that stuff going on, I don't feel super comfortable going in, even though I am vaccinated
like fully but I do like in this current time, the distance because of the health precautions and stuff.
“especially with COVID it- it's it it's a lot safer”
Disadvantages
Technical issues (n=9, 60%)
Bad connection “Occasionally it's annoying if like, connections are bad and it's hard to understand people, technology
issues, that sort of thing. But that's about it. That's pretty much the only issues I’ve had.
“It's not really the telemedicine, like visit. It's more like the, like if you live somewhere like, where the
Internet is weird like, sometimes the connection is like, unstable.
Difficulty using platforms “I think, I think it's a bit difficult sometimes because of planning around it and about environment. Because
it can be stressful to figure out how to set up something like Zoom or Teams if you haven't before.
“I don’t personally have any concerns but I know that some people might struggle with a public video
call software via the platform that we use. It might be more comfortable for some people to be able to do
theirs through something that can be assured as limited access and very secure. Like a [HOSPITAL
NAME] run portal type thing.
Discomfort (n=8, 53%)
Impersonal “There is kind of more of a personal aspect to sitting with somebody. You kind of get to be with them and
it's more of a close connection you have with them.
“I just think sitting in a room with someone and seeing them right there kind of helps you get more of a
feeling of ‘this is a real person. Because sometimes, looking at a screen, it's just ‘this is my computer.’
There’s just this barrier in between you and the other person.
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QuotationsThemes and subthemes
“It's just a different environment and it changes how you feel about a certain area.
“I think at first it was very unfamiliar to me and kind of hard to adjust with talking to someone on a screen
instead of in person. Especially about kind of personal things, but that wasn't an issue much as I got more
used to doing that.
Unfamiliar
Privacy (n=7, 47%)
“Some of the things that I don't really like is because everybody's at home, I feel like people will overhear
me because the walls aren’t that thick and, or like they'll come up to me and say like, ‘hey I heard you
say this over your interview’or like, ‘during your visit.’”
“Like the contrast between being in person and being like, through Zoom - when you're in person you're
in an office or you're in a room somewhere and it's just the two of you, and you know that it's private.
But then when you're not, on their end it's private but also like, on your end, you can be anywhere.
Advantages
The 2 main themes that emerged regarding the advantages of
telemedicine included convenience (n=13, 87%) and comfort
(n=9, 60%). Regarding convenience, participants appreciated
not having to commute to the clinic, the efficiency of their visit,
and the user-friendliness of the web-based platform. Regarding
comfort, TGD youth liked being in their own environment to
conduct the visit, not having to deal with social anxiety
surrounding their gender identity when visiting the clinic, and
avoiding exposure to COVID-19.
Disadvantages
The most commonly reported disadvantage of conducting the
visit over telemedicine was technical issues (n=9, 60%).
Specifically, TGD youth cited unreliable internet connections
and difficulty navigating a new or different platform to engage
with their providers. Just over half of the TGD youth also
reported discomfort (n=8, 53%) using telemedicine, indicating
that these visits felt impersonal and were an unfamiliar way of
engaging with their providers. Finally, participants frequently
voiced concerns about privacy (n=7, 47%), explaining that they
felt more likely to be overheard by family or others while
connecting with their providers from home.
Preferred Modalities for Receiving Gender-Affirming
Care
A slight majority of the interviewed youth (n=7, 47%) indicated
that they preferred in-person visits compared to telemedicine
(n=5, 33%), while the remaining 3 (20%) youth said it would
depend on certain characteristics of the visit. Interestingly,
although most youth had a specific preference for either
in-person or telemedicine modality, it became clear through
further discussion that their preferred modality could vary based
on certain characteristics of the visit (Table 3).
Specifically, youth indicated that their first visit to the gender
clinic would be better done in person, but for return or follow-up
visits, they preferred telemedicine. In fact, of the 5 youth who
preferred telemedicine visits, 3 (60%) indicated wanting their
first visit to be in person. Regarding the first visit, participants
cited wanting to build rapport with their provider and have their
initial conversations occur face-to-face. Participants who
preferred telemedicine for follow-up or return visits most often
indicated that this was due to the simplicity of the visit and the
frequency with which they occur.
Another main theme was visit complexity. Participants
suggested that complex visits, including those that involved
procedures or major changes to their care, were better done in
person. Conversely, participants indicated that less complex
visits, including verbal check-ins with a provider, could be
easily completed via telemedicine.
Finally, youth cited distance to the clinic as an important factor
in deciding when to use telehealth services. Specifically, youth
suggested that in-person visits were better for those who lived
closer to the gender clinic, while telemedicine were better for
those who lived further away or with other transportation
barriers.
The following quote from a study participant illustrates this
interplay between these characteristics:
My first visit with the gender clinic was definitely
better in person, but many consecutive appointments
after that, I would have absolutely done telemedicine.
Because there was my first appointment, I was
prescribed something out the gate and that's, you
know, I would prefer that to be in person. But every
subsequent appointment besides that wasn't talking
about starting a new medication. It was definitely
like, I’m here for 10 minutes and I’m out. All right,
well goes back to convenience, where I don't really
want to hear the same thing, I don't want to go drive
half an hour and then hear the same thing that I heard
last appointment then drive away…I guess it depends
on the subject matter and the duration of the visit...But
yeah, yeah it's not, it, I feel like, ironically, despite
my stance on telemedicine, like, as in, like, it's
probably my least preferred way of communicating
medical ideals, it's, I also believe that it's the future
of medicine, because it's so convenient.
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Table 3. Reasons for in person versus telemedicine care.
Visit description and quotationsThemes
TelemedicineIn-person
Visit type Return visitFirst visit
“I think follow ups it really makes sense to do them vir-
tually because you're gonna have so many of them.
“I personally would prefer the first appointment to be
in person, just so it's easier to connect.
“I honestly think that telemedicine makes a lot more
sense than in person, especially for follow ups”
“I think maybe go in person, just for like a big initial
visit, and then after that I would have just been com-
fortable with telemedicine.
Complexity Less complex visitMore complex visit
“It kind of depends what the subject of the visit would
be, but for the normal check-ins I do, I think telemedicine
is preferable.
“If we were going to talk about doing something new
or making a big change to the stuff I'm already doing,
I think that's something that would be better done face-
to-face. “I think it depends on what needs to be done at my visit,
because for just an average ‘how are you doing on your
hormones’kind of talking thing, I would prefer
telemedicine.
“If they need to, you know, run tests, draw blood or
whatever like that, then I would rather come in then,
be in person, because I feel like that's harder to do
virtually.
Distance Further distance from clinicCloser proximity to clinic
“Personally, I thought it was a lot easier because I live
a few hours away.
“I don't think, there's no challenges or obstacles be-
cause like, we live like, really close to her like, well,
to the hospital. “I think time is a big part of it…Like, for me, I prefer
telemedicine because it's a long time to drive.
“I guess if you're closer to [CITY] and, and would, you
would be, different reasons.
Discussion
Principal Findings
The purpose of this study was to better understand TGD youth’s
perspectives and preferences regarding how they receive
gender-affirming care services in order to inform and improve
future care delivery. Our results support those of past surveys
and quantitative research, which have shown that youth prefer
in-person visits to telemedicine [8-11]; however, our qualitative
discussions regarding benefits and drawbacks of each modality
further indicate that the choice is not so simple. Although a
plurality of TGD youth in our study indicated a preference for
in-person visits, they also recognized the value of telemedicine
to themselves and others for less complex or follow-up visits
and the impact it may have in facilitating access to care [12].
Given variations in needs and visit complexity, our results
suggest that both in-person and telemedicine modalities should
be options for the provision of gender-affirming care, and that
patient needs and constraints should be considered as these
services become more widely implemented.
Although the rapid implementation and scale-up of telemedicine
options resulting from the COVID-19 pandemic have allowed
health care systems to continue serving patients remotely, any
such rapid change also brings growing pains [2,3]. Some of
these may be remediable with time. For example, certain
disadvantages cited by the youth in our study, including
discomfort with the new modality and certain technical issues,
may improve as patients become more familiar with the visit
process and platforms used. Other disadvantages, such as feeling
impersonal, may also be helped by additional provider training
on building rapport virtually. However, there are some
disadvantages, such as privacy issues, which may be more
difficult to change given the different environments where youth
engage in their telemedicine visits. National guidelines
emphasize the importance of confidential health services for
adolescents, which allow for private discussion of sensitive
health topics and encourage adolescent responsibility for their
own health care [18,19]. This may be even more important for
TGD youth who are not open about their gender identity to all
of the individuals with whom they live or those who have limited
parental support [11,20]. Additional changes to virtual care
provision (eg, room scans, use of headphones, asking whether
the patient is alone or if they can be overheard at the start of the
visit) may help to alleviate some of these privacy concerns, but
further solutions to ensure access to confidential care via
telemedicine are warranted [21].
Strengths and Limitations
An important strength of this study is our use of qualitative
methods to engage more deeply with end users. Existing
stakeholder-engaged research mechanisms have allowed for
patient-centered discussions regarding their needs and
expectations around their health care [22]. However, youth, and
particularly TGD youth, are rarely included in these
conversations [23]. Thus, engaging with youth in this way
represents an important first step toward developing more
youth-friendly health information technology, which will not
only make these services more responsive to the unique needs
of youth but will likely also increase patient satisfaction and
engagement with health care [23-26]. Given the current
generation’s access to and familiarity with technology [27],
such adolescent-informed platforms may also have additional
benefits as they relate to promoting adolescent autonomy over
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their health care and facilitating their successful transition to
adult care [28-30].
A critical limitation of our study is sample size, as the
experiences of this small group of youth cannot be interpreted
as representative of the broader population of TGD youth.
Similarly, rates of perceived parental support among participants
in our sample were quite high, which can be attributed to our
recruitment strategy that focused on TGD youth who had already
completed a telemedicine visit at the Seattle Children’s Gender
Clinic. Care must therefore be taken not to generalize these
findings to youth who may have lower rates of perceived
parental support. Our study is also limited by a relative lack of
diversity, which is not uncommon in clinic-based studies of
TGD youth, [30] but reflects the characteristics of populations
with greater access to gender-affirming care services [31]. That
said, it is critically important to recognize how intersectional
identities and experiences—such as those who identify as gender
diverse and are Black, Indigenous, and people of color or live
rurally—can further exacerbate barriers to care [31].
Furthermore, additional barriers that may disproportionately
impact TGD youth, such as parent or caregiver dependence for
access to care and consent to services, should also be considered
when developing pediatric gender-affirming care services [6,32].
Relatedly, since we interviewed youth via Zoom and only
interviewed those who had participated in a telemedicine visit,
we did not hear the perspectives of youth who experience
barriers to accessing these services. Specifically, those who live
in areas where internet access is unavailable or less reliable may
still have disproportionately less access to health care and other
services. Despite the often-cited advantage of increasing access
to health services among those living in medically underserved
areas, we must remain aware of the fact that the rapid
implementation of telemedicine could exacerbate existing
disparities [33].
Conclusions
Overall, our study supports the provision of both in-person and
telemedicine modalities as options for pediatric gender-affirming
care. Moreover, the benefits and drawbacks identified by TGD
youth in this study can be used to inform new and developing
telemedicine programs for adolescent health care as well as
future work focused on building adolescent-friendly and
responsive health systems.
Acknowledgments
This project was supported by the Seattle Children's Research Institute and the Agency for Healthcare Research and Quality
(AHRQ; K12HS026393-03; principal investigator: GMS) and Pivotal Ventures.
Thank you to the Seattle Children’s Gender Clinic TGD youth advisory board for their review of the interview questions and
results. Thank you to Elsie Rockers for her assistance with data collection.
Authors' Contributions
NFK drafted the initial manuscript, carried out initial analyses, and reviewed and revised the manuscript. YHA assisted with
drafting the initial manuscript, collected data, carried out the initial analyses, and reviewed and revised the manuscript. KMB
collected data and reviewed and revised the manuscript. DAC and LPR assisted in conceptualizing and designing the study and
critically reviewed and revised the manuscript. WP critically reviewed and revised the manuscript. GMS conceptualized and
designed the study and data collection instruments, supervised data collection, and reviewed and revised the manuscript. All
authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Conflicts of Interest
The author GMS has received consultative compensation from Pivotal Ventures and the Fenway Institute.
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Abbreviations
REDCap: Research Electronic Data Capture
TGD: transgender and gender diverse
Edited by S Badawy; submitted 01.09.22; peer-reviewed by K Braune, L Thurston, M Mars; comments to author 29.01.23; revised
version received 01.02.23; accepted 04.02.23; published 14.02.23
Please cite as:
Kahn NF, Anan YH, Bocek KM, Christakis DA, Richardson LP, Pratt W, Sequeira GM
Understanding Transgender and Gender-Diverse Youth’s Experiences Receiving Care via Telemedicine: Qualitative Interview Study
JMIR Pediatr Parent 2023;6:e42378
URL: https://pediatrics.jmir.org/2023/1/e42378
doi: 10.2196/42378
PMID: 36745775
©Nicole F Kahn, Yomna H Anan, Kevin M Bocek, Dimitri A Christakis, Laura P Richardson, Wanda Pratt, Gina M Sequeira.
Originally published in JMIR Pediatrics and Parenting (https://pediatrics.jmir.org), 14.02.2023. This is an open-access article
distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which
permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR
Pediatrics and Parenting, is properly cited. The complete bibliographic information, a link to the original publication on
https://pediatrics.jmir.org, as well as this copyright and license information must be included.
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... The patients and parents in this study described feeling less connected to their providers and less able to have their concerns addressed through telehealth. 47 While the physical components of gender care can only be addressed in person, providers should ensure that they foster a comfortable environment for those appointments that can be completed via telehealth. 35 Providers should ensure patient privacy during telehealth appointments (e.g. ...
... A total of 60% of the patient respondents preferred not to have their parents accompany them to gender care appointments, and their open-ended responses revealed an overall desire to maintain privacy and autonomy over their medical decisionmaking. 47,48 Conversely, the parent respondents wanted to be informed and involved in their children's gender journeys, potentially conflicting with their children's desires. Given the low parent response rate, however, it is likely that this sample was skewed toward parents who are particularly supportive of their children. ...
... At minimum, providers should consider offering an opportunity for patients to speak privately with them, by asking parents to leave the room or allowing the youth to take part of the visit in a different space. 47,48 Providers should also be aware that, due to the constraints of telehealth, it is not always possible to ensure privacy for youth, as the provider cannot see the entirety of the space where the visit is taking place or who might be off-camera. 48 Parental support has been shown to have several benefits for TGD individuals, including improvements in quality of life and lessened depression. ...
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... 30 A similar study conducted by Kahn et al. on the advantages and disadvantages of TM and preferred visit modalities found participants liked the convenience, efficiency, and comfort in their own environment, and found TM user-friendly. 31 In addition, these participants found TM less scary because of social anxiety consistent with our study results. 31 Like previously published opinions of cisgender youth 15 and transgender and nonbinary patients in Canada, 32 most of our participants preferred in-person visits to TM. ...
... 31 In addition, these participants found TM less scary because of social anxiety consistent with our study results. 31 Like previously published opinions of cisgender youth 15 and transgender and nonbinary patients in Canada, 32 most of our participants preferred in-person visits to TM. They shared that an affirming and comfortable clinic setting was favored over TM appointments. ...
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... Data from the portion of the adolescent interviews focused on receiving care via telemedicine has been published elsewhere. 16 ...
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Access to equitable health care, including gender-affirming medical care (eg, pubertal blockers, sex hormones), continues to be a struggle for transgender and nonbinary youth, especially those who are in racial and ethnic minority groups.¹,2 Barriers to accessing comprehensive health care may contribute to the many health disparities transgender and nonbinary youth face, such as higher rates of substance misuse, burden of sexually transmitted infections, bullying, being bullied, anxiety, depression, suicidal ideation, and suicidal behaviors compared with their aged-matched cisgender peers.³ Looking at 1 disparity, mental health, there is clear evidence that access to pubertal suppression and gender-affirming hormones can be lifesaving.⁴,5 Yet, barriers to this care continue to exist, and many transgender and nonbinary people avoid accessing health care because of experiences of discrimination and/or fear of breaches in confidentiality.
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The coronavirus disease 2019 (COVID-19) pandemic led to an unprecedented demand for health care at a distance, and telehealth (the delivery of patient care using telecommunications technology) became more widespread. Since our 2018 state-of-the-art review assessing the pediatric telehealth landscape, there have been many changes in technology, policy, payment, and physician and patient acceptance of this care model. Clinical best practices in telehealth, on the other hand, have remained unchanged during this time, with the primary difference being the need to implement them at scale. Because of the pandemic, underlying health system weaknesses that have previously challenged telehealth adoption (including inequitable access to care, unsustainable costs in a fee-for-service system, and a lack of quality metrics for novel care delivery modalities) were simultaneously exacerbated. Higher volume use has provided a new appreciation of how patients from underrepresented backgrounds can benefit from or be disadvantaged by the shift toward virtual care. Moving forward, it will be critical to assess which COVID-19 telehealth changes should remain in place or be developed further to ensure children have equitable access to high-quality care. With this review, we aim to (1) depict today’s pediatric telehealth practice in an era of digital disruption; (2) describe the people, training, processes, and tools needed for its successful implementation and sustainability; (3) examine health equity implications; and (4) critically review current telehealth policy as well as future policy needs. The American Academy of Pediatrics (AAP) is continuing to develop policy, specific practice tips, training modules, checklists, and other detailed resources, which will be available later in 2021.
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Purpose: No information exists on the needs of transgender youth transitioning their gender-affirming health care from pediatric to adult settings. We obtained perspectives of transgender youth, their parents, and providers, and aimed to identify barriers and unmet needs during the transition of care. Methods: Five online focus groups were conducted between February and March 2019 with separate groups for transgender youth 13-17 and 18-21 years old; parents of transgender youth 13-17 and 18-21 years old; and gender-affirming health care providers. Thematic analysis of transcripts was conducted by two researchers. Pooled Cohen's κ was 0.83, indicating excellent inter-rater reliability. Results: Sixty-six participants (29 youth, 27 parents, and 10 providers) identified 10 themes. Themes related to barriers to transition included access and insurance challenges, patient readiness and hesitancy to transfer care, and multidisciplinary-system inefficiencies. Themes related to improving transition focused on prioritizing referrals from trusted sources, establishing gradual patient independence, aligning gender transition goals, and setting impetus for transferring care. Conclusion: Successful health care transition for transgender youth must consider the intricacies of a complex medical system and challenges that they pose to adolescents' perceived abilities to independently manage health care and willingness to prepare transfer of care. Given that patients, parents, and providers assume important roles during the process, each can uniquely contribute toward ensuring a smooth transition. Efforts to improve this process should focus on enhancing collaboration between clinics and families through crowdsourcing resources, continued verification of health goals, supporting greater patient autonomy, and delineating an explicit timeline for transition.
Article
Purpose: Telemedicine holds potential to improve access to gender-affirming care for gender-diverse youth (GDY), but little is known about youth's perspectives regarding its use. The purpose of this study was to explore GDY's experiences and satisfaction with telemedicine for gender-affirming care during the COVID-19 pandemic. Methods: An online, cross-sectional survey was completed by 12-17-year-old GDY after a telemedicine gender clinic visit. Demographic characteristics, responses to a 12-item telemedicine satisfaction scale, and items assessing interest in future telemedicine use were analyzed using descriptive statistics. Open-ended items exploring GDY's experiences were coded qualitatively to identify key themes. Results: Participants' (n=57) mean age was 15.6 years. A majority were satisfied with telemedicine (85%) and willing to use it in the future (88%). Most GDY preferred in-person visits for their first gender care visit (79%), with fewer preferring in-person for follow-up visits (47%). Three key themes emerged from the open-ended comments: (1) benefits of telemedicine including saving time and feeling safe; (2) usability of telemedicine such as privacy concerns and technological difficulties; and (3) telemedicine acceptability, which included comfort, impact on anxiety, camera use, and patient preference. Conclusions: Despite their preference for in-person visits, a majority of GDY were satisfied and comfortable with telemedicine, and expressed their interest in continuing to have telemedicine as an option for care. Pediatric gender care providers should continue services through telemedicine while implementing protocols related to privacy and hesitation regarding camera use. While adolescents may find telemedicine acceptable, it remains unclear whether telemedicine can improve access to gender-affirming care.