Caregiver perspectives on receiving gender-affirming care with their transgender and gender diverse adolescents via telemedicine

Abstract

Telemedicine may help improve access to gender-affirming care for transgender and gender diverse (TGD) adolescents. Parents or guardians (i.e., caregivers) of TGD adolescents play a critical role in supporting TGD adolescents in accessing this care. The purpose of this study was to explore caregivers’ perspectives regarding their adolescent receiving pediatric gender-affirming care via telemedicine to help providers and health systems optimize this modality for future care delivery. Caregivers (n=18) of TGD adolescents ages 14–17 participated in semi-structured, individual interviews that were transcribed and analyzed qualitatively. Caregivers cited participating in visits from their home environment, decreased anxiety, COVID safety, ability to have more family members attend, no transportation demands, and effective delivery of care as advantages of telemedicine. Disadvantages included dysphoria or discomfort with self-image, impersonal provider-patient interactions, video teleconferencing fatigue, difficulty with portal navigation, connectivity issues, and lack of privacy. Caregivers largely deferred to their child’s preference regarding the choice of visit modality, but many reported a preference for the first to be conducted in-person, and follow-up and less complex visits via telemedicine. Health systems should consider these perspectives as they adapt telemedicine infrastructure to better meet the needs of patients and their families.

Introduction

Transgender and gender diverse adolescents (TGD), or those whose gender identity does not align with their sex assigned at birth, experience significant barriers to receiving care, including a limited number of providers with formal training in this area, stigma and discrimination both in healthcare settings and in their communities, and restrictions in access to care (Dowshen et al., 2016; Inwards-Breland et al., 2021; Weixel & Wildman, 2022). For this reason, the accessibility of telemedicine, or two-way, real-time, audio-video communication between a healthcare provider and a patient residing in a different location (Olson et al., 2018), presents an important opportunity to provide gender-affirming care to adolescents who desire this care (Lucas et al., 2023; Stewart et al., 2021). Prior to the COVID-19 pandemic, telemedicine was largely used to provide specialty healthcare services to populations living in rural settings or in regions with health professional shortages, with efforts directed towards expanding its reach for the provision of subspecialty care services to other vulnerable populations, including children and adolescents (Burke et al., 2015). The COVID-19 pandemic forced telemedicine technologies into the forefront, as healthcare systems were faced with rapidly adapting and optimizing these systems for broader use (Barney et al., 2020; Evans et al., 2020; Koonin et al., 2020), as well as consider how virtual care modalities may be used to inform the future directions of care delivery for patients coming from underserved and historically marginalized communities.

Previous research has indicated that nearly half of TGD adolescents receiving care in a hospital-based multidisciplinary gender clinic were interested in receiving gender-affirming care services using telemedicine (Sequeira, Kidd, Coulter, et al., 2021). More recent research focusing on TGD adolescents’ experiences with telemedicine during the COVID-19 pandemic showed that although many adolescents still prefer in-person visits, TGD adolescents understand the impact telemedicine may have in facilitating access to care, both for themselves and others in the TGD community (Kahn et al., 2023; Rankine et al., 2023; Russell et al., 2021; Sequeira, Kidd, Rankine, et al., 2021).

Parents or guardians (i.e., caregivers) of TGD adolescents play a critical role in their access to healthcare (Bhattacharya et al., 2021; Buckloh et al., 2022). This role may include identifying and contacting local providers, facilitating travel/transportation to visits, providing financial means related to receiving care, participating in medical visits, and medical decision-making. The role of the caregiver is particularly salient for TGD individuals under the age of 18 who are interested in receiving gender-affirming medical care, which requires caregiver consent. This may also influence TGD adolescent perspectives of telemedicine, as one study found that TGD adolescents who reported lower levels of perceived parental support were more likely to report interest in receiving care via telemedicine (Sequeira, Kidd, Coulter, et al., 2021).

One recent cross-sectional survey study found that caregivers of TGD adolescents already receiving gender-affirming medical care were highly satisfied with using telemedicine (Apple et al., 2022). However, no prior studies have substantively explored caregiver perspectives regarding the ways telemedicine can be used and improved for adolescent gender-affirming care provision in the post-pandemic era. The purpose of this study was to qualitatively explore the perspectives of caregivers of TGD adolescents regarding the advantages, disadvantages, and preferences related to the receipt of pediatric gender-affirming care via telemedicine, with the goal of helping providers and health systems optimize this modality for future care delivery.

Materials and Methods

Participants and Recruitment

Caregivers of TGD adolescents ages 14–17 years who had completed a telemedicine visit to discuss gender-affirming care with a medical provider in one multidisciplinary gender clinic in the Pacific Northwest of the United States were invited via email or in-clinic study flyer to complete a brief screening survey. Inclusion criteria included 1) being the parent of a TGD adolescent ages 14–17 and 2) having attended a telemedicine visit with their child in the prior six months. Eligible caregivers were invited to participate in a semi-structured, individual interview over Zoom with a member of the research team. Each participant received a $20 e-gift card for their participation in the interview. All study procedures were approved by the Seattle Children’s Institutional Review Board.

Measures

Demographic information regarding their child’s gender identity, caregiver role in relation to their child, race and ethnicity, and travel time to the clinic were self-reported on the REDCap survey prior to the interview (Harris et al., 2009). For the caregiver’s role in relation to their child, caregivers could select from the following options: mother, father, nonbinary parent, grandparent, or a free response write in option. For their child’s gender identity, respondents could select all that applied from the following: trans male or transmasculine, trans female 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, or a free response write-in option.

Interview

The first portion of the interview included open-ended questions related to caregivers’ experiences with their TGD adolescent receiving gender-affirming care via telemedicine. The second half of the interview focused on caregiver perspectives on 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 related to the provision of care via telemedicine:

• How did you feel about doing a gender clinic visit using telemedicine? Do you think your presence on the telemedicine visit had an impact on your child?

• 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? Do you think other parents would feel the same or different? Why or why not?

• Was your child’s first visit with the gender clinic via telemedicine or in-person? Do you think doing a first visit with the gender clinic using telemedicine would feel the same or different than doing a follow-up visit? Why?

• During telemedicine visits, some adolescents have asked their providers if they could turn off their video. Why do you think this might be happening?

• Did you experience any barriers to completing the gender clinic visit via telemedicine with your child?

Interview questions were developed in partnership with an advisory board of TGD individuals and caregivers of TGD adolescents for clarity and applicability prior to inclusion in the study protocol.

Analyses

Interview transcripts were auto-generated in Zoom, then manually reviewed by research team members for accuracy and clarity. Each transcript was then analyzed using an inductive thematic analysis framework (Braun & Clarke, 2006). Thematic data analysis was conducted in Dedoose qualitative analysis software by two different members of the research team with experience in qualitative research methodologies (SocioCultural Research Consultants LLC, 2018). These two members of the research team began the analytic process by collaboratively generating an initial codebook, which was then reviewed in partnership with a group of TGD youth, parent, and primary care provider stakeholders prior to coding. Once consensus on the project codebook was reached, each transcript was then independently coded by each coder (JG and VR) and disagreements were adjudicated by a third member of the research team (KB) until consensus was reached. The research team met weekly during the coding process to iteratively generate key themes until thematic saturation was reached. No additional interviews were completed once data saturation was reached. The final aggregation of themes and sub themes identified by the research team were then triangulated through discussions with TGD youth and caregiver stakeholders to ensure findings were interpreted within the context of community acceptability.

Results

Participant characteristics

Interviews were completed with 18 caregivers, whose demographic characteristics are presented in Table 1.

Table 1.

Demographic characteristics of interview participants (n=18)

Caregiver relationship to adolescent, n (%)
Mother	15 (83.3)
Father	3 (16.7)
Adolescent’s gender identitya, n (%)
Trans male or male	13 (72.2)
Trans female or female	3 (16.7)
Nonbinary	2 (11.1)
Gender nonconforming	1 (5.6)
Agender	1 (5.6)
Demigender	2 (11.1)
Selected >1 gender identity, n (%)	3 (16.7)
Ethnicity and raceb, n (%)
Hispanic	1 (5.6)
American Indian/Alaska Native	2 (11.1)
Asian	0 (0.0)
Black/African American	0 (0.0)
Native Hawaiian/Pacific Islander	0 (0.0)
White/Caucasian	18 (100)
Travel time to gender clinic, n (%)
≤ 30 minutes	3 (16.7)
31 minutes – 1 hour	6 (33.3)
1 – 2 hours	5 (27.8)
2 – 3 hours	3 (16.7)
3 – 4 hours	0 (0.0)
> 4 hours	1 (5.6)

^aParticipants could select more than one gender identity. Gender identity options that were provided but not represented in the sample included “Genderqueer”, “Genderfluid”, “Gender variant”, and “Bigender”.

^bParticipants could select more than one and race or ethnicity.

Qualitative findings

The final codebook included 41 unique codes that focused on advantages and disadvantages of telemedicine (n=28) and preferences for care modalities (n=13).

Advantages and disadvantages of telemedicine for gender-affirming care

Caregiver’s perspectives regarding the advantages and disadvantages of telemedicine are shown in Table 2 with representative quotes.

Table 2.

Advantages and disadvantages of telemedicine for gender-affirming care

Advantages
Theme	Subtheme	Representative Quotes
Comfort	Ability to Participate in Home Environment	I think they enjoy the telemedicine appointments more than in-person appointments. It gives them the safety of being in home and somewhere they know as opposed to be in an unfamiliar place. [Mother of nonbinary adolescent]
	Decreased Anxiety	I mean overall, it’s a pretty positive experience, and half of us have [Autism Spectrum Disorder], and so like, obviously like being in-person is anxiety inducing sometimes. And I like that, you know, most of it is electronic communication, so I don’t have to feel anxious and my child doesn’t have to feel anxious about going to be in-person. [Mother of demigender adolescent]
	COVID Safety	I like the fact that I didn’t have to drive to Seattle and go in a building during COVID. [Mother of transmasculine adolescent] It was easy, effective, certainly during the pandemic that we’re still in the midst of, it felt a whole lot safer than going into the clinic. [Mother of transmasculine adolescent]
Convenience	Ability for More Family Members to Attend Appointment	I think having his dad join in on telemedicine made it more comfortable for him. [Mother of transmasculine adolescent]
	No Transportation Demands	…it’s an ordeal, at least half a day for us to drive there and back, and there’s always traffic…it was convenient. We could fit it into our schedule easily. [Mother of transmasculine adolescent]
	Effective Delivery of Care	I actually feel like [telemedicine visits] aid [communication] because they didn’t have to have their masks on. So she maybe was able to pick up on subtleties and facial expressions and stuff, because sometimes kids… don’t always have the words to say how they’re feeling. [Mother of transmasculine adolescent] Yeah, the nurse we talked to was really patient and informative, [they] made sure we had everything we needed to know working with the telemedicine, and the [provider] together … They were able to send us things that we had questions on… it was really helpful. [Mother of transfeminine, agender adolescent]
Disadvantages
Theme	Subtheme	Representative Quotes
Caregiver Perceptions of TGD Youth’s Struggles with Telemedicine	Dysphoria/Discomfort with Self-Image	I think that seeing themselves on a screen… can hit those dysphoria buttons for them. [Mother of transmasculine adolescent] I think that for kids who have dysphoria, I mean, for everyone having the video of yourself is kind of a little disconcerting. [Mother of transmasculine adolescent]
	Impersonal Provider-Patient Interactions	…there’s a lot of nuance, it’s lost when you’re not in front of somebody. [Father of transmasculine adolescent] I think the part that’s missing is kind of that deeper level connection. [Mother of transfeminine adolescent]
	Video Teleconferencing Fatigue	I think it’s just the nature of the format, and I think, you know, from my own kids too, doing zoom meetings last year for school, they were so burned out and going to [the city] to the gender clinic was actually kind of fun. [Mother of transmasculine adolescent] …You just are always looking at your face, you’re always looking at the camera. And it gets tiring. [Father of transmasculine adolescent]
Technological Difficulties	Difficulty with Portal Navigation	There’s a little more friction involved with establishing a telemedicine connection through the [institution’s] portal then every other virtual communication that I have. [Mother of transmasculine adolescent]
	Internet Connectivity Issues	It’s just one little thing off and then you’re spending five minutes troubleshooting. [Father of transmasculine adolescent]
Lack of Privacy in Home Environment		Where can I go where I’m not going to hear this conversation, and get you the privacy that you need? [Mother of transmasculine adolescent]

Advantages.

Caregiver-perceived advantages of telemedicine were divided into two main themes, comfort and convenience. Regarding comfort, participants expressed appreciation that they were able to conduct visits from their own environment. They also reported feeling that telemedicine was more accessible, particularly for adolescents or parents who experience anxiety when interacting with providers in the context of in-person visits, or those who were concerned about exposure to COVID-19 in public spaces.

…he has some social anxiety, and especially at that time before he transitioned, his anxiety was worse…I think just…being at home in the comfort of his own home was helpful for him to feel less nervous.

(Mother of transmasculine adolescent)

With respect to convenience, caregivers of TGD adolescents expressed appreciation that family members who may not have been able to physically attend an in-person visit were able to attend virtually when appointments were conducted via telemedicine. Participants also described appreciating that telemedicine allowed them to not have to commute long distances to the clinic while still being able to receive services effectively.

[My child’s father is] still able to get on and be part of the visit and be part of the gender care, which I think is really important for him through this journey as well, because he doesn’t understand it as much as I do.

(Mother of transfeminine/agender adolescent)

90% of the time would choose telehealth because it is so convenient for us. The biggest factor for going in [for an in-person visit] is that it is essentially an all-day event. And as opposed to this, I show up five minutes before we’re scheduled.

(Mother of nonbinary/gender nonconforming/transfeminine adolescent)

Disadvantages.

Caregivers also noted disadvantages of using telemedicine, including their perception of adolescent’s struggles with telemedicine, technological difficulties, and lack of privacy. Caregivers of TGD adolescents perceived that adolescents may struggle with telemedicine due to fatigue, dysphoria and discomfort with self-image due to the nature of video calls requiring TGD adolescents to look at a self-view image, and because video calls feel less personable than in-person care.

These are topics that are also kind of difficult and uncomfortable to talk about, especially in the first few appointments when they don’t know these providers, and they don’t know that they’re going to be really well listened to and taken seriously…it’s hard enough talking about it. But then to have somebody looking at you, you feel very vulnerable.

(Mother of nonbinary/gender nonconforming/transfeminine adolescent)

I think that seeing themselves on a screen…can hit those dysphoria buttons for them.

(Mother of transmasculine adolescent)

I think the part that’s missing is kind of that deeper level connection.

(Mother of transfeminine adolescent)

With respect to technology-related challenges, some caregivers reported that they experienced difficulties navigating the online patient portal used to access the telemedicine visit and issues connecting to the internet.

Yeah, the portal is, I would say, there’s a little bit of confusion. And I’m sure it totally makes sense if it was explained to me, but I’ve never taken the time to investigate.

(Mother of transmasculine adolescent)

The second visit we had to do in the car after school and…it was OK, but we still had some connection issues. And the same thing when we did the prior visit with my home internet, which is a satellite so it’s a little bit iffy.

(Mother of transmasculine adolescent)

Other caregivers found privacy concerns to be an issue, considering that visits were often conducted in the home environment, where there may not be enough physical space for TGD adolescents to talk with their provider confidentially without other members of the household potentially hearing their discussion. Caregivers also reported desiring confidential time to speak with their child’s provider regarding questions they did not feel comfortable discussing in front of their child.

I’ve had to like actively herd everybody to the other side of the house, so that my kiddo could have like five minutes to talk privately without somebody over hearing whenever they’ve talked to the doctor, so the privacy factor is a challenge.

(Mother of nonbinary/gender nonconforming/transfeminine adolescent)

Early on in this process I think it would have been nice to have the option [to speak to the provider alone]…because there’s a lot of questions, especially early on…if you’re there in gender clinic that you might have for the doctor that you may or nay not want your child to be a part of.

(Mother of a transmasculine adolescent)

Preferences for care modalities

Themes and representative quotes regarding caregivers’ preferences for care modalities (telemedicine vs. in-person) are shown on Table 3. Though caregivers generally deferred to their child’s preference regarding the choice of visit modality, the majority preferred having the first visit be conducted in-person. Participants stated multiple benefits to having the first visit in-person, including feeling more comfortable with their adolescent receiving gender-affirming care in the context of an information-intensive first visit, having their TGD adolescent experience a LGBTQ+ positive space, and being able to meet more of the gender clinic staff.

Table 3.

Caregivers’ perspectives on when to use telemedicine vs. in-person visits

Theme	Subtheme	Representative Quote
Prioritizing Youth Preferences in Location of Visit		Sometimes he likes to go in-person and I like to give him that option. [Mother of transmasculine adolescent]
Visit Complexity	More Complex Visit	I think it kind of depends, because if it’s like trying to start a new form of hormone therapy or something that he needs teaching with, I’d want to do that in-person. [Mother of demigender/transfeminine adolescent]
	Less Complex Visit	Having blood work done and then needing to evaluate those results, for say, testosterone adjustments, telemedicine is just fine.[Mother of transmasculine adolescent] But if it’s an informational or a reviewing labs kind of thing then, prefer to do it over telemedicine. [Mother of transmasculine adolescent]
Visit type	First Visit	At first we were in-person…it was good for him to feel validated. It was good for my husband and I to feel supported in this big transition… I wanted to know who the people were that were gonna help us through these steps. [Mother of transmasculine adolescent]
	Follow-up Visit	I know a lot of people that I’ve recommended go to the clinic live so far away, and so I think a lot of parents would choose that [Telemedicine]. I do think that having some of the initial appointments be in-person is nice. But yeah, it’s just too convenient to do it online. [Mother of nonbinary/gender nonconforming/transfeminine adolescent] I think it’s nice to at first meet the provider in-person and then be able to follow up with telemedicine. [Mother of transmasculine adolescent]
Availability of Appointments Based on Modality		I mean you have to base it on the timing, the situation. Sometimes telemedicine appointments, you can get in more rapidly than face to face. [Mother of transfeminine adolescent] If it was choosing between getting to go in-person versus having a sooner appointment with less of an ordeal, I would be absolutely fine doing telehealth. [Mother of nonbinary/gender nonconforming/transfeminine adolescent]

Being there I think you’re more aware of everything, you’re able to listen and ask questions more presently. You know just the whole experience itself, and seeing all the support, I just think it’s important to have the very first visit [be] in-person.

(Mother of nonbinary adolescent)

However, multiple caregivers also noted that if there was a sooner appointment available via telemedicine, they would rather take a telemedicine appointment than wait longer for the in-person appointment.

I want to make an appointment with the gender clinic, and they said, “Okay we can see you in-person [that is months away]” or “We could do a telemedicine appointment in three weeks.” I’m going to pick the telemedicine appointment.

(Mother of transfeminine adolescent)

Caregivers preferred telemedicine for follow-up visits, largely due to convenience. Participants expressed that the complexity of the visit was also a factor in whether they preferred in-person visits or telemedicine visits for their child. For example, if the TGD adolescent was initiating a new medication, or if there was a notable change in their care plan, then in-person visits were preferred. However, if the visit simply involved reviewing laboratory values or adjusting doses of medication, then telemedicine was deemed more appropriate.

I think it depends how complicated it is. If it’s just a quick checkup and checking to see how they’re doing and make sure that nothing’s changed, I think it’s fine. But if it’s more detailed and complicated, I think in-person would be better.

(Mother of transmasculine adolescent)

Discussion

The goal of this study was to learn about caregiver perspectives on utilizing telemedicine for gender-affirming care with their TGD adolescent, with a broader objective of understanding if and how these services should be made available in the post-pandemic era. Our results indicate that, similar to TGD adolescents (Kahn et al., 2023), caregivers perceive telemedicine to be more comfortable, convenient, and accessible than in-person visits, while also noting some disadvantages related to privacy and technological difficulties.

As TGD adolescents have suggested in prior studies, caregivers of TGD adolescents desired to have ongoing access to telemedicine to receive gender-affirming care for their children (Kahn et al., 2023). Caregivers reported that telemedicine visits were often more convenient for them to attend and that this modality helped decrease anxiety for both parents and adolescents because it allowed them to participate from their home environment. One additional advantage identified by caregivers in this study that has not been previously reported by adolescents is that telemedicine allowed other family members who may have been unable to attend an in-person visit to participate in their child’s care. This may be especially important for parents who are struggling to support their TGD adolescent in lowering barriers to participating in visits with providers who can discuss the importance of caregiver support and the positive impact this has on TGD adolescent mental health (Brown et al., 2020; Durwood et al., 2017; Olson et al., 2016; Tankersley et al., 2021).

Similar to concerns reported by TGD adolescents (Kahn et al., 2023), caregivers noted concerns about being overheard. Importantly, in addition to their child having confidential time with their provider, some caregivers expressed wanting to speak with their child’s provider confidentially. This finding is important for gender-affirming care providers who, after receiving consent from an adolescent, may find it helpful to create space to speak directly with caregivers of TGD adolescents to address any questions they may have that they are uncomfortable discussing in front of their adolescent (Barcelos et al., 2023; Bluth et al., 2021).

As was reported in a study with TGD adolescents early in the pandemic (Sequeira, Kidd, Rankine, et al., 2021), many of the caregivers in this study shared concerns that their child may desire to turn off their video camera due to discomfort or dysphoria related to their self-image when conducting visits on telemedicine. Considering this, we recommend providers non-judgmentally check-in with adolescents during telemedicine visits about their comfort leaving the video on and allow them to turn it off for a portion of the visit, if desired. Other caregiver concerns, including difficulties navigating the patient portal and remembering appointments, may warrant certain health system infrastructure adaptations. These include providing dedicated support for families in signing up for and navigating patient portals and adapting reminder systems, which were largely developed for in-person encounters, to help overcome barriers to completing telemedicine visits.

Finally, regarding preferences for in-person vs. telemedicine visits, caregivers perspectives were very similar to those noted in previous studies of TGD adolescents (Kahn et al., 2023). Caregivers felt that it was important to be in-person for the first visit with the gender clinic to experience the welcoming environment and to build a connection with the providers and clinic staff. They also felt that being in-person was more appropriate for complex visits or those that may need more hands-on support, such as teaching how to administer gender-affirming medications, while subsequent or follow-up visits could more easily be conducted via telemedicine. In addition, caregivers frequently noted deferring to their child regarding their preference to use or not use a specific modality. As a result, our findings support previous research indicating that both in-person and telemedicine should be made available for the provision of gender-affirming care in order to meet patient and family needs and constraints (Kahn et al., 2023).

Limitations

Given the qualitative nature of this work, it cannot be interpreted as broadly representative of all caregiver perspectives. This is especially true for caregivers of TGD adolescents who may be less supportive of their adolescent accessing gender-affirming medical care, as all caregivers who participated in this study had previously attended a clinical visit with their TGD adolescent. Similarly, our sample lacked diversity with respect to caregiver role, race and ethnicity. Future research is therefore needed to understand the perspectives and experiences of families of color, especially given these adolescents are disproportionately underrepresented in specialty adolescent gender clinics across the United States (Chiniara et al., 2018; Handler et al., 2019; Kidd et al., 2023; Sequeira, Kidd, Coulter, et al., 2021). Additionally, similar research is needed to explore perspectives of those TGD adolescents and families who desire but are not currently receiving this care to better understand whether telemedicine may be able to help overcome existing barriers and expand access for these groups of adolescents.

Relatedly, by conducting our interviews via Zoom and including only caregivers who had previously participated in a telemedicine visit, we were unable to hear from those who lived in areas where internet access may be less reliable or even unavailable. This also reflects a larger issue related to access to health services in medically underserved and/or under resourced areas. Thus, as telemedicine services for gender-affirming care expand into the post-pandemic era, we must ensure that they are implemented equitably to avoid exacerbating existing health and structural disparities (Wilcock et al., 2019).

Conclusion

Similar to prior studies with TGD adolescents, caregivers support the use of telemedicine for gender-affirming care. However, some concerns, including those related to privacy, difficulties navigating telemedicine platforms, and preferred visit modalities suggest additional work is needed to ensure telemedicine is meeting the needs of adolescents and their families. Our findings support the continued implementation of both in-person and telemedicine visits for gender-affirming care for adolescents and highlight the ongoing need for health systems to adapt telemedicine infrastructure to support adolescents and their caregivers in overcoming identified barriers to receiving care using this modality.