Abstract
Background
Transgender and gender diverse (TGD) children and youth face significant disparities when accessing healthcare. Telehealth has become a promising strategy for improving healthcare access. The experiences of TGD children and youth using telehealth to access healthcare are poorly understood.
Aim
To synthesize the current evidence on TGD children and youths’ experiences using telehealth.
Methods
A meta-ethnography was conducted on seven papers examining TGD children and youths’ experiences with telehealth.
Results
The main findings expressed by TGD children and youth regarding their experiences of telehealth encompassed the themes of feeling safe, feeling seen, ease of access, and technological affordances.
Discussion
We propose a model to consider when designing telehealth for TGD children and youth entitled Trans-IT, incorporating the four key themes: feeling safe, feeling seen, ease of access, and technological affordances. Overall, this study identifies the range of user experiences that influence the accessibility and relevance of care available through telehealth for TGD children and youth and provides a foundation for future policy, practice, and research.
Introduction
Transgender and gender diverse (TGD) children and youth are a marginalized population who encounter negative experiences and face barriers when accessing conventional healthcare, making them less likely to access any type of care (Boyer et al., Citation2022; Chong et al., Citation2021; Puckett et al., Citation2018). As per the United Nations, children are those younger than 18 years of age, and youth are those aged 15-24 (United Nations, Citation2013). There is some overlap between children and youth, but the clinical needs and treatments provided to TGD children versus youth are distinct (Coleman et al., Citation2022). For example, care for prepubescent TGD children may focus on social transition and psychological well-being, whereas care for postpubescent TGD youth may focus more on affirming medications (testosterone or estrogen) and procedures (chest or genital reconstruction (Coleman et al., Citation2022). While TGD children and youth have general healthcare needs, they also merit access to this specific gender affirming care that may require access to both primary care and specialty care services.
Access to care is further complicated by the challenge for TGD people to find gender affirming healthcare. Gender affirming care can entail providing affirming medications and surgeries to TGD people to support their transition. Gender affirming care can also be more broadly defined as care that enables TGD individuals to express themselves without the fear of being rejected or pathologized (Pullen Sansfaçon et al., Citation2019). Unfortunately, these principles of gender affirming care are not always adhered to. Research shows that TGD children and youth report that healthcare providers are unprepared to provide gender affirming care and that TGD youth avoid general healthcare because they fear stigma and discrimination from both providers and support staff (Boyer et al., Citation2022; Chong et al., Citation2021; Kearns et al., Citation2021).
Besides provider-related barriers, TGD children and youth describe geographic location as a barrier to accessing healthcare, detailing the need to travel far distances to receive gender affirming care from specialty clinics or to locate a provider who is trans-friendly (Kearns et al., Citation2021). Moreover, family dynamics influence access to healthcare for this population. Younger gender diverse people require parental consent to obtain healthcare, family insurance coverage, and transportation to access care (Puckett et al., Citation2018). In a 2019 survey, Canadian transgender and non-binary youth identified other prevalent barriers to accessing healthcare, including fears of being seen in public, not having the time to go, and financial barriers (Taylor et al., Citation2020).
Added to these barriers is the broader shifting politics of gender affirming treatment access for youth. Healthcare for TGD children and youth has become a politicized and polarized issue of debate in some countries, significantly affecting what services are available for TGD children and youth. In North America, a recent trend in legislation banning gender affirming care for youth has become a significant obstacle to care access. In the United States (US), over 20 states introduced bills banning gender affirming care for minors in 2023, and since then, over half of these states have passed this care-restricting legislation (McNamara et al., Citation2023). In Canada, one province has recently proposed a complete ban on gender affirming treatments for those under 18 (Canadian Academy of Child and Adolescent Psychiatry Advocacy Committee, Citation2024). Other countries such as Norway, the United Kingdom, Sweden, Denmark, France, and Finland have recently narrowed the eligibility criteria for youth gender affirming treatments (Brierley et al., Citation2024).
Access to healthcare is a social determinant of health (McGibbon E et al., Citation2008; World Health Organization, Citation2024). Healthcare disparities for transgender children and youth can lead to chronic physical and mental health conditions, whereas receiving affirming care can shift mental health outcomes for this population to equal those of their cisgender counterparts (Eisenberg et al., Citation2020; Pullen Sansfaçon et al., Citation2019). TGD children and youth experience disproportionate rates of suicidality, self-harm, depression, anxiety, and substance use in comparison to the general population (Chong et al., Citation2021; Gridley et al., Citation2016). Tordoff et al. (Citation2022) found that transgender youth who had access to gender affirming healthcare had a 60% lower likelihood of depression and a 73% lower likelihood of self-harm and suicidality compared to those who did not. These authors’ findings demonstrate how access to healthcare improves health outcomes and quality of life for TGD children and youth. Considering the importance of accessible healthcare for the well-being of TGD children and youth, it is vital to identify novel solutions to the problem of poor care access.
The promise of telehealth
Sequeira et al. (Citation2021) define telehealth as using technology to support accessing healthcare from a distance. Colucci et al. (Citation2019) discuss telehealth and telemedicine (a subset of telehealth) as remote communication processes with different functions. These functions can include monitoring, recording data, and activating the behavior of end users from a distance (Colucci et al., Citation2019). Telehealth can involve a healthy or ill end-user receiving communication such as health promotion, education, or treatment via technology from a distance that is not necessarily from a provider (Colucci et al., Citation2019). Therefore, telehealth can be defined as an individual using technology to access any healthcare (including health related support, intervention, or education) from a distance.
Telehealth could mitigate barriers to healthcare, such as financial issues and poor geographic access to services, while providing benefits, such as saving time and promoting safety (Hedrick et al., Citation2022; Sequeira et al., Citation2022; Stoehr et al., Citation2022). The COVID-19 pandemic showed the feasibility of adapting many healthcare services for the TGD population to a telehealth format (Zwickl et al., Citation2023). Despite the promise of increasing access, there have been long-standing concerns about the safety and privacy of telehealth for other vulnerable populations that indicate careful implementation and evaluation of telehealth is important (Talal et al., Citation2020).
TGD children and youth and telehealth
Designing relevant telehealth services requires understanding user experiences and preferences (Jalil et al., Citation2019). Little is known about the telehealth experience of TGD children and youth, including whether they prefer to access healthcare through this modality. Significantly more research has been conducted on TGD adults’ experiences using telehealth compared to TGD children and youth (Apple et al., Citation2022; Hedrick et al., Citation2022). The experiences of adults do not necessarily align with those of children and youth, so care must be taken in extrapolating findings to younger populations. In Stoehr et al.’s (Citation2022) systematic review on telemedicine for gender affirming care, only one of the nine analyzed studies featured youth, and the telehealth interventions identified in two studies were designed for transgender adults, not children and youth. Notably, most of the studies reviewed were quantitative, and none described the lived experiences of children and youth. Kearns et al. (Citation2021) synthesized the lived experiences of transgender and non-binary youth accessing gender affirming care, but these experiences involved conventional healthcare access, not telehealth. These authors suggested that future research could be conducted on transgender youth’s preferred models of care or healthcare environments to inform policy development. While telehealth is a feasible and acceptable way to access healthcare for TGD children and youth, further research is warranted to understand their experiences using this modality and to establish if these experiences suggest improved access to equitable healthcare (Gilbey et al., Citation2020; Stewart et al., Citation2023; Stoehr et al., Citation2022).
Aims and research question
This review aimed to synthesize the existing literature on the following question: What are the experiences of TGD children and youth using telehealth? As part of this review, we aimed to inform recommendations for future research, policy, and practice. This study aimed to transcend individual study findings and create a conceptual model of considerations when designing accessible and usable telehealth for this population.
Methods
Design
We conducted a meta-ethnography using the phases in Sattar et al.’s (Citation2021) article, “Meta-ethnography in healthcare research: A guide to using a meta-ethnographic approach for literature synthesis” based on the original seven stages first identified by Noblit and Hare (Citation1988). This method synthesizes qualitative data. This method was chosen because it allows for a higher-order interpretation of individual study findings to create a model that surpasses individual study insights (Sattar et al., Citation2021).
Search strategy
Locating relevant studies
The search was conducted using a strategy with search filters and a health sciences librarian consultation for articles containing the following terms and synonymous keywords: telehealth, transgender/gender diverse, and children/youth. The following databases were used: CINAHL, MEDLINE, and PsychINFO. The search was completed in September 2023 using MeSH terms and Boolean operators for the above terms (a comprehensive list of terms used per database can be found in a supplementary table). Search findings were imported into Covidence, and abstracts were independently screened by the research team comprising the primary and secondary authors per inclusion and exclusion criteria. The team discussed and resolved selection discrepancies.
Inclusion and exclusion criteria
Inclusion criteria
Studies with a participant population comprising children and youth were included. The age range was defined as an average participant age of 24 years of age or less, which aligned with the United Nation’s (UN) definitions of children (under the age of 18) and youth (ages 15-24) (United Nations, Citation2013). Studies with participants who were transgender or gender diverse were included. Studies that used broader categorization of their samples beyond TGD children and youth were included (i.e. patients and caregivers, or gender and sexual minority children and youth) if samples were adequately differentiated to identify data from the target population and if the majority of the youth in the sample comprised TGD children and youth. Studies on the use of telehealth (based on the definition presented earlier in line with Colucci et al.’s (Citation2019) taxonomy of telehealth) were included. Studies published between 2013 and 2023 were included. This year range was selected as telehealth is a technological phenomenon and relevant research about the target population would likely be from the last decade. Primary qualitative studies or mixed methods studies were included where the qualitative data could be extracted, and thematic analysis was undertaken. The decision to include mixed-methods studies was made if both authors agreed on inclusion to ensure sufficient data to conduct a synthesis (this decision is in line with Cahill et al.’s (Citation2018) guide to conducting meta-ethnography). English language studies and studies from global locations were included.
Exclusion criteria
Studies where TGD participants were not differentiated in the analysis, studies where participants themselves did not use telehealth, studies with non-specified ages of study participants, and studies that did not complete thematic analysis of qualitative data, were excluded.
Quality appraisal
The quality of the included studies was assessed using the Critical Appraisal Skills Programme (CASP) checklist (Critical Appraisal Skills Programme, Citation2018). Each included study was scored out of 10. The higher the score, the higher the quality. The two highest-scoring studies were used as index studies, meaning they were the first to have concepts translated into each other, followed by the remaining studies in order from high to low quality. All studies were included regardless of quality score because, despite subjectively poor methodological rigor, all studies may offer insightful qualitative data (Sattar et al., Citation2021).
Reading the studies and determining how they are related
The studies were repeatedly read, and the first and second-order constructs (direct participant quotations and primary author themes) were extracted verbatim using a data extraction form for each study. Relationships between the themes of different papers were established by creating a list of study themes to determine common or reoccurring concepts. This list was used to group and reduce these themes into relevant descriptive categories.
Translating the studies and synthesizing the translations
The concepts from each paper were compared to all the others to check for similarities so they could be further arranged into conceptual categories. This was done starting with the highest quality paper and ending with the lowest quality paper until there was a synthesis of each paper’s primary author interpretations. These themes were examined within and across studies using a translations table (included as a supplementary table) to organize data. The studies were similar enough for a reciprocal translational synthesis, defined as summarizing shared themes across the studies by comparing first and second-order constructs leading to the development of third-order constructs (reading the primary data synthesis alongside a translations table) (Sattar et al., Citation2021). Finally, a line of argument synthesis, defined as using third-order constructs to interpret the relationship between higher-level themes and create a new theory or model (Sattar et al., Citation2021), was conducted to create a new conceptual model based on the themes derived from the translation.
Expressing the synthesis
The eMERGe Meta-Ethnography Reporting Guidance (France et al., Citation2019) was followed to write the synthesis, and a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) (Page et al., Citation2021) diagram of the search was included as seen in . Findings were summarized, and strengths, limitations, recommendations, and conclusions were identified.
Figure 1. PRISMA flow diagram.
Results
Search
Three databases were searched (CINAHL, MEDLINE, and PsychINFO), resulting in 439 articles. After the removal of duplicates, 339 articles underwent title and abstract screening. After title and abstract screening, the two research team members conducted full-text eligibility screening with the remaining 12 studies together. During full-text eligibility screening, five articles were excluded. Exclusion reasons are outlined in the PRISMA flow diagram (). Seven studies were included in the synthesis.
Included study characteristics
summarizes the characteristics of the seven included studies. Six of the studies were conducted in the United States of America (USA) (Apple et al., Citation2022; Hedrick et al., Citation2022; Kuhns et al., Citation2021; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). One study was conducted in New Zealand (Lucassen et al., Citation2023). All the studies were published in the last three years.
Table 1. Included study characteristics.
All the articles included the experiences of TGD children and youth with an average sample age of 24 years of age or less with a range of child and youth participants aged 12-31 years (Apple et al., Citation2022; Hedrick et al., Citation2022; Kuhns et al., Citation2021; Lucassen et al., Citation2023; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). The total number of TGD children and youth participants who contributed to qualitative data across the studies was 192 individuals (Apple et al., Citation2022; Hedrick et al., Citation2022; Kuhns et al., Citation2021; Lucassen et al., Citation2023; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). Three studies included parents’/caregivers’ perspectives, totaling 60 individuals (Apple et al., Citation2022; Hedrick et al., Citation2022; Martínez et al., Citation2023). Two studies included the perspectives of cisgender children and youth, totaling 31 individuals (Lucassen et al., Citation2023; Rankine et al., Citation2023).
The articles included a range of telehealth services. Five articles employed telehealth as a virtual visit between patient and provider using either audio-only or audio-visual communication (Apple et al., Citation2022; Hedrick et al., Citation2022; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). One article used telehealth as a mobile application for HIV prevention (Kuhns et al., Citation2021). One article used a serious game to provide an online cognitive behavioral therapy intervention as their method of telehealth provision (Lucassen et al., Citation2023).
One study used a qualitative design and focus groups for data collection (Lucassen et al., Citation2023). The other six studies used mixed methods in their design (Apple et al., Citation2022; Hedrick et al., Citation2022; Kuhns et al., Citation2021; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). Five of the studies that employed mixed methods used open-ended survey questions for qualitative data collection (Apple et al., Citation2022; Hedrick et al., Citation2022; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022) and one used semi-structured interviews (Kuhns et al., Citation2021).
Study quality was assessed using the CASP checklist. Quality scores ranged from 5/10-9/10. Notably, only one study had adequately considered the relationship between researchers and participants (Lucassen et al., Citation2023); the remainder had limited evidence of researcher reflexivity. Many of the studies used content analysis despite labeling their analysis as thematic, thus limiting the depth of analysis (Apple et al., Citation2022; Hedrick et al., Citation2022; Kuhns et al., Citation2021; Sequeira et al., Citation2022). All the articles clearly stated the aims of their research and findings while using at least in part qualitative methods to address study aims. Four studies did not justify their research design (Apple et al., Citation2022; Hedrick et al., Citation2022; Martínez et al., Citation2023; Sequeira et al., Citation2022). Despite variable methodological quality among the studies, they were all included.
Data synthesis
First-order concepts (direct participant quotations) and second-order constructs (primary author themes from included studies) were identified and translated into third-order constructs. The third-order constructs are presented as the following four themes: feeling safe, feeling seen, ease of access, and technological affordances. shows the contributions of each included study to the respective themes above.
Table 2. Contributions of the included studies to themes.
Findings
Feeling safe
This theme recurred among five studies (Apple et al., Citation2022; Hedrick et al., Citation2022; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). There were variable conceptions of safety among participants. Participants experiences of safety included perceived safety of personal health information, safety of the home environment, and safety from public microaggressions and gender-based violence (Apple et al., Citation2022; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). Some participants worried that their confidential information might be overheard or inadvertently shared due to the perceived security of telehealth and the environments in which they were using it (Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). A participant in Sequeria et al.’s (Citation2022) study described telehealth safety concerns by stating, “I feel like everyone in the house could hear me talking, and that made me very afraid because my provider needed to ask some sensitive questions, and my parents were with me, and couldn’t exactly leave” (p. 130).
Other TGD children and youth felt telehealth offered a comfortable and secure way to access care and emphasized trusting their providers and the telehealth platforms to protect their information (Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). Another conceptualization of safety was telehealth, offering protection from contracting COVID-19 by eliminating the need to travel outside the home (Apple et al., Citation2022; Hedrick et al., Citation2022; Sequeira et al., Citation2022). For other TGD children and youth participants, telehealth offered a sense of psychological safety, meaning they felt less anxious expressing themselves and less fearful of public prejudice when using it (Apple et al., Citation2022; Martínez et al., Citation2023; Sequeira et al., Citation2022). A participant in Apple et al.’s (Citation2022) study characterized feeling safe from discrimination when using telehealth, stating, “The front desk staff can’t misgender me because I don’t interact with them” (p. 162).
Feeling seen
Four studies (Kuhns et al., Citation2021; Lucassen et al., Citation2023; Martínez et al., Citation2023; Sequeira et al., Citation2022) represented the theme of feeling seen. Feeling seen was depicted by participants wanting to choose how they looked or if they were seen at all (i.e. turning the camera on and off) while using telehealth (Sequeira et al., Citation2022). Others felt limited by the way they could feel seen using telehealth; for example, a participant in Martínez et al.’s (Citation2023) study stated, “I missed the personal connection. Because gender affirming care is so embodied, I kept wanting to show how my body looked/moved and how I wanted it to look/move. That was hard to do over telehealth” (p. 5). For the studies on the use of games and apps, feeling seen took on a slightly different meaning; TGD children and youth participants wanted to see themselves in the characters, the language, the content, and the intended audience of the telehealth interventions (Kuhns et al., Citation2021; Lucassen et al., Citation2023). It was important to TGD children and youth in these studies to choose how they were represented while using telehealth (Kuhns et al., Citation2021; Lucassen et al., Citation2023). For example, a participant in Lucassen et al.’s (Citation2023) study describes the utility of choosing character pronouns, “…if the pronouns were used and they were able to be changed, then it’s a cool way for trans people or questioning people or anybody like that to try out pronouns without having to endanger themselves or do anything else” (p. 251). Beyond seeing themselves represented, TGD children and youth in the studies wanted diverse, inclusive, accurate, and positive representation (Kuhns et al., Citation2021; Lucassen et al., Citation2023). A participant in Lucassen et al.’s (Citation2023) study illustrated the need for positive representation in telehealth interventions by stating, “… but it’s quite sad, especially like there’s a trans [transgender] boy in it and his entire pain comes from being trans… so it’s representation but it’s sad representation” (p. 250).
Ease of access
Five studies (Apple et al., Citation2022; Hedrick et al., Citation2022; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022) contributed to the theme of ease of access. TGD children and youth in the studies found that telehealth improved accessibility by eliminating the need to travel outside the home to access care and, in turn, saved time, money, and effort. (Apple et al., Citation2022; Hedrick et al., Citation2022; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). For example, a participant in Rankine et al.’s (Citation2023) study stated, “Telemedicine does not require traveling to a designated location for a conversation and as such could reduce the stigma for seeking help” (p. 363). Alternatively, some participants felt aspects of telehealth detracted from accessibility by creating too casual of an environment to receive care or by making it more difficult to schedule things like follow-up appointments and blood work (Apple et al., Citation2022; Hedrick et al., Citation2022; Martínez et al., Citation2023). A participant in Hedrick et al.’s (Citation2022) study suggested that telehealth access was “dependent on patient’s access to internet and technological resources.” (p. 148).
Technological affordances
Six studies (Apple et al., Citation2022; Kuhns et al., Citation2021; Lucassen et al., Citation2023; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022) represented the theme of technological affordances. This theme was related to the specific ways in which technology improved or detracted from the telehealth experience, including the limitations of current technology in providing certain types of care. For example, a participant in Martínez et al.’s (Citation2023) study stated, “It is impossible to have any sort of physical exam over telehealth, and [provider name] will only share photos in person. These are both extremely important for most appointments related to gender surgery (p. 5).” Other participants referenced technological affordances in terms of the quality of telehealth internet connections, audio and visual interface, content, and features (Apple et al., Citation2022; Kuhns et al., Citation2021; Lucassen et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). TGD children and youth using telehealth games and apps expected contemporary and interactive user experiences (Kuhns et al., Citation2021; Lucassen et al., Citation2023); such as one participant in Lucassen et al.’s (Citation2023) study who stated, “Serious games like SPARX should be ‘updated’, technical issues need to be addressed (e.g. ‘I could barely play it on my phone’)” (p. 251). The affordances of technology influenced the utility of telehealth interventions for TGD children and youth in these studies.
Line of argument synthesis: Trans-IT
A line-of-argument synthesis was completed to demonstrate the primary author’s interpretations of the included studies. This synthesis integrated the third-order themes into a model of guiding principles for designing telehealth for TGD children and youth based on this population’s user experiences.
Trans-IT () is the title of this illustrative model. Trans-IT depicts a subway train to represent the user experience of telehealth for TGD children and youth. A subway uses technology to allow the user to travel from one place to another, much like telehealth acts as a means of connecting a user to health care, regardless of distance. This train also represents the journey of where we need to go in providing safe and accessible means for TGD children and youth to use telehealth.
Figure 2. Model of guiding principles when designing telehealth for TGD children and youth.
Feeling Safe is represented in Trans-IT with the “mind the gap” phrase, a commonly used safety warning for public transit. This sign warns passengers to take caution to prevent falls and harm when transferring from the platform to the train. Much like when using telehealth, TGD children and youth need telehealth options where safety and confidentiality have been prioritized, and precautions like “mind the gap” have been taken to protect them from harm. “Mind the gap” also serves as a reminder that many gaps still exist in current telehealth services resulting in some TGD children and youth feeling unsafe using telehealth.
Feeling seen is depicted in Trans-IT with curtains on the train’s windows. This population describes the need to choose how and when they are seen using telehealth and what this representation looks like. The key word in how TGD children and youth wish to be seen using telehealth is choice. A curtain provides the opportunity to let in the amount of light an individual chooses, whether they wish to uncover the window fully, allow for partial privacy, or entirely obscure the view. TGD children and youth emphasize the need to choose how their bodies look using telehealth, to choose to show their faces on camera, and to choose how they are represented in the content of games and apps. Current telehealth options for TGD children and youth either facilitated or inhibited the way they could feel seen.
Ease of access is represented in Trans-IT with the ramp on the rear door of the train. TGD children and youth necessitate accessible telehealth options for care that are designed for ease of use and that alleviate barriers when accessing traditional healthcare (time, money, transportation). Furthermore, inequitable access to technological resources must be addressed so all TGD children and youth may use telehealth if they so choose, despite factors such as socio-economic status or geographical location.
Finally, technological affordances are represented by the train itself working and running “on time,” affording certain kinds of journeys. When traveling via the subway, passengers expect a journey without technological malfunctions that can cause undue waits. For TGD children and youth using telehealth, the reliability of this technology was of the utmost importance, and it shaped their experiences. If internet connections or audio/visual displays were not up to par, this majorly impacted the usability of telehealth for this population.
Discussion
This meta-ethnography synthesized the experiences of TGD children and youth using telehealth. The synthesis of seven studies resulted in four themes that illustrate factors influencing this population’s telehealth experience. These themes include feeling safe, feeling seen, ease of access, and technological affordances. These findings can be contextualized within current literature regarding telehealth use, although mainly with populations other than TGD children and youth, due to limited research with this group.
Feeling safe using telehealth
The significance of safety using telehealth has been explored in other telehealth research. Duane et al. (Citation2022) describe the importance of optimizing the clinician and the patient’s environment to promote psychological safety, while Rea et al. (Citation2023) explore the importance of adolescents developing independent relationships with clinicians to enhance emotional safety and promote healthy development. Similarly, in our study, the perception of safety among TGD children and youth depended on the environment in which telehealth was used; factors such as the potential to be overheard, the presence of parents, and perceived confidentiality influenced psychological safety. Our study and Rea et al. (Citation2023) found that most children and youth valued privacy and independence when accessing telehealth, but some children and youth found that parental presence enhanced safety.
Riggs et al. (Citation2023) found that TGD children and youth benefited from the presence of animals when using telehealth as they offered a sense of comfort and support. These authors also explore the unique ways in which animals offer a welcome diversion from the sometimes uncomfortable realities of using telehealth such as staring at a screen. These results can be compared to our findings that environmental factors influence feelings of safety among TGD children and youth when using telehealth, although we did not have specific findings related to the presence of pets.
The use of telehealth for some TGD children and youth in our study facilitated a sense of feeling safe from the stigma encountered in public spaces. A similar experience was reported in a recent integrative review of research on individuals seeking mental health care via telehealth during the pandemic (Bright & Doody, Citation2023).
Feeling seen using telehealth
Our meta-ethnography describes the importance of feeling seen when TGD children and youth use telehealth. Virtual platforms may enhance or inhibit how TGD children and youth are represented or physically seen. Karches (Citation2023) describes the limitations of telehealth in providing the equivalent of an in-office embodied encounter with patients, while Downing (Citation2021) details the limits of telehealth in discerning visual body language used to determine emotional states. Downing (Citation2021) also details the need to modify interactions via telehealth to create a more embodied interaction, such as speaking louder or using exaggerated gestures and expressions to convey the embodiment lost via telehealth. The above literature on embodiment using telehealth conveys the limitations of telehealth in allowing its users to feel seen, as we found in our study. However, it fails to touch on how telehealth may empower users. For example, telehealth may enable TGD children and youth to choose how and when to show their faces on camera or to choose diverse avatars, names, and pronouns when using telehealth apps and games. These options for representation would never have been available for an in-person healthcare experience. Feeling seen may have been more important to TGD children and youth in our synthesis because much of gender affirming care is structured around transition and how TGD bodies are esthetically changed to align with inner identities. Consequently, when using telehealth, this population cares about visual appearance but also about having diverse and accurate representation options that reflect them as individuals.
Lupton and Maslen (Citation2017) discuss an alternative view on embodiment; in their review, they posit that telemedicine embodiment fundamentally differs from embodiment in traditional healthcare. These authors state that telehealth can authorize patients to take control of their health by physically using technologies to facilitate a visit or by inspecting their bodies and verbally relaying observations to clinicians. The findings of this study emphasize that embodied sensory experiences are still possible via telehealth but that some of this work is now put in the hands of patients themselves. These findings are in line with how TGD children and youth in our study desired to choose how they felt seen when using telehealth. Our study differed from current literature on embodiment using telehealth because rather than compensating for the lack of embodiment (Downing, Citation2021) or emphasizing how a different type of sensory embodiment may exist with telehealth use (Lupton & Maslen, Citation2017), TGD children and youth simply wanted to choose what this embodiment looked like. For some TGD children and youth, this meant not being seen at all. Recognizing that TGD children and youth experience disproportionate rates of developmental trauma compared to their cisgender peers (Price et al., Citation2023), it is essential to understand that this concept of autonomy and choice aligns with the tenets of trauma-informed care (Forkey et al., Citation2021) and that choice of representation may help reclaim power lost during adverse childhood experiences.
The concept of feeling seen when using telehealth may also affect how we transfer care delivery from in-person to telehealth, which is not a simple transition. Providers often lack the training to provide high quality telehealth and obtaining the necessary guidance and experience is intricate (Greenhalgh et al., Citation2023). The complexity of telehealth training and the new roles telehealth creates for patients and providers may be why TGD children and youth in our study did not always feel adequately represented when using telehealth. It is unclear what, if any, training telehealth providers and users received in most of the included studies. Accordingly, integrating representation for TGD children and youth into telehealth training will be necessary for providers to consider the concept of feeling seen in future telehealth provision.
Ease of access using telehealth
Our meta-ethnography demonstrated how telehealth use among TGD children and youth is shaped by how easily they can access it. Telehealth experiences among the target population often improved access to care by saving time, money, and effort. However, using telehealth was sometimes limited due to inadequate access to the necessary technology and other resources. Some time ago, Van Dijk and Hacker (Citation2003) described this digital divide as a “complex and dynamic” set of barriers that would exacerbate inequities if neglected. Aisbitt et al. (Citation2023) recently called attention to the intersecting inequities exacerbated by the digital divide for children and youth accessing telehealth-based mental health services. Ko et al. (Citation2023) found that among adults, those who were low-income and living in rural areas reported less access to telehealth compared to higher-income and urban individuals. These findings align with the perspective of some TGD children and youth in our study that a digital divide exists, meaning telehealth access depends on access to technology. Moreover, the TGD children and youth participants in the included studies used telehealth, meaning they did not necessarily represent those of diverse incomes, education levels, and geographic locations. Consequently, there is an entire group of TGD children and youth who were not captured in our study who may face alternative barriers that prohibit using telehealth at all. Future research on telehealth for TGD youth needs to address the specific barriers to accessing telehealth for this population, such as internet reliability in rural areas or electronic device affordability.
Stoehr et al.’s (Citation2022) systematic review on telemedicine for gender affirming care discusses how telehealth saves money by reducing costs associated with travel and missed work for appointments. These authors state that telehealth is cost-effective over time despite the need for an initial investment in technology for its use. Stoehr et al. (Citation2022) also found that gender affirming care could be hard to come by locally and that telehealth provided access to specialized gender affirming services regardless of geographical location. This study further supports how telehealth may enhance accessibility for TGD children and youth, as illustrated by our study findings. TGD children and youth may especially benefit from telehealth to access healthcare due to their dependence on parents for financial support and transportation, particularly if this parental support is not favorable. Parental support/consent has been studied as a barrier to gender affirming care for TGD individuals (Puckett et al., Citation2018), but not specifically in telehealth.
Technological affordances using telehealth
The affordances of technological design and functioning influenced the quality of TGD children and youth’s experiences and the overall usability of telehealth. Other research has corroborated the limitations of telehealth platforms for providing certain types of care that require physical exams and procedures (Gajarawala & Pelkowski, Citation2021; Stoehr et al., Citation2022). TGD children and youth highlighted the limitations of the telehealth technologies used in our included studies. The current literature outlines methods for patient-assisted virtual physical examinations and the possibility of measuring patient vital signs at a distance using technologies from home (Benziger et al., Citation2021). In our synthesis, clinicians did not appear to be employing patient-assisted techniques or facilitating the use of advanced technologies to expand the scope of telehealth provided care. The cost of such technologies may have been one barrier to their use, particularly among TGD children and youth of low socioeconomic status. Furthermore, the need to educate patients in conducting physical exam techniques (i.e. checking their pulse) and trusting them to proceed as instructed and accurately report findings to obtain valid objective data may have been daunting to healthcare providers. The fear of error using these methods and consequent negative health outcomes for patients may have been one reason they were not used. The young age of some participants in the included studies may have been another contributing factor, as providers may have lacked confidence in their ability to convey objective assessment findings via telehealth accurately.
Strengths and limitations
Limitations of the research field
The number of studies included in our meta-ethnography was small, as were the sample sizes in each of the included studies. Only seven studies met the criteria to be included in the analysis. This sparse number of included studies speaks to the limited research conducted with the TGD population. There was the potential for sampling bias in each of the included studies, as many relied upon convenience sampling. Six of the seven included studies used a cross-sectional design, which only provides a snapshot of participant experiences, limiting data extrapolation to the larger population and failing to determine if perspectives persist over time (Apple et al., Citation2022; Kuhns et al., Citation2021; Lucassen et al., Citation2023; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022). Notably, none of the included studies used a guiding theoretical framework. The lack of a foundational theory limits the linking of these studies to achieve greater understanding and provide consistent recommendations.
There was limited geographical diversity in the included studies. There was an apparent lack of research related to telehealth among TGD children and youth outside the US. Although some experiences may be shared universally, this meta-ethnography would not capture distinct cultural differences. Furthermore, health systems vary between countries, as would telehealth availability and provision. Racial and cultural diversity was limited in most studies, including mostly Caucasian participants. Exceptionally, in Kuhns et al.’s (Citation2021) study, the majority of participants were either black or multiracial, and in Lucassen et al.’s (Citation2023) study, two of the participants had a Māori background, resulting in a limited inclusion of indigenous perspectives. Overall, the findings of this study are based primarily on the experiences of Caucasian children and youth, which limits generalizability to Black, Indigenous people of color (BIPOC) communities.
Notably, the studies were all conducted in metropolitan areas. Some participants may have been from rural areas as they were using telehealth interventions, but many of the studies did not specify the geographical location of the participants. Two studies specified travel distances among participants but did not specify locations (Rankine et al., Citation2023; Sequeira et al., Citation2022). The majority of participants in both studies were within one hour of the urban clinics. Consequently, the generalizability of findings to rural TGD children and youth is restricted.
Undifferentiated samples of 2SLGBTQIA + individuals in many of the studies found in our search limited our ability to include them. We specifically wanted to examine the experiences of TGD children and youth. However, they were often grouped with other sexual minority children and youth, with their parents, or with adults. Many studies were excluded as they did not differentiate the sample, or the quotations included by gender identity and age of the participant. We decided to include the studies that used broader categorization of their samples beyond the target population if they differentiated these samples sufficiently so that quotations from our target population could be identified and if the majority of the youth in the sample were TGD children and youth (as previously mentioned in methods). This speaks further to the limited research solely dedicated to TGD children and youth and their unique perspectives. It should be noted that the thematic analysis in some of the included papers was based on the experiences of samples that included other sexual minorities, parents/caregivers, and adults in addition to the target population.
Strengths and limitations of this study
A strength of this project is its contribution to the limited body of evidence on the experiences of TGD children and youth using telehealth. Achieving a greater understanding of how telehealth can improve healthcare accessibility for TGD children and youth has implications for mitigating adverse health outcomes associated with poor access to care (Chong et al., Citation2021).
Another strength of this project was that it followed a systematic and rigorous method outlined by Sattar et al. (Citation2021) in their guide to conducting meta-ethnography for healthcare research. Accordingly, the steps taken to conduct this synthesis would be easy to replicate.
A limitation was that most included studies were not primary qualitative research. Sattar et al. (Citation2021) do not support using mixed-methods studies in meta-ethnographic synthesis. However, authors such as Kearns et al. (Citation2021) have conducted meta-ethnographies, including mixed-methods studies, if qualitative data on experiences could be extracted separately. Cahill et al. (Citation2018) also support the inclusion of mixed-methods studies in their guide to conducting meta-ethnography if two reviewers agree on their inclusion during the screening process—this was the case in our review. Six of the seven studies included in this synthesis used mixed-methods methodology, and only one was a primary qualitative study. The mixed-methods papers all extracted qualitative data separately and conducted thematic analysis based on this data, so they were included (as previously mentioned in methods). The richness of this data varied, as in four of the seven studies, it was derived only from a few open-ended questions or a free response tacked on to the end of a survey (Apple et al., Citation2022; Martínez et al., Citation2023; Rankine et al., Citation2023; Sequeira et al., Citation2022).
Another limitation of this study was that we did not differentiate children’s experiences from youth. These two samples overlap as some older teenagers would be considered both children and youth as per our definition, while those over 18 and under 24 are legally adults but also fall within the youth category. This decision to create a combined sample of children and youth was necessary to have enough included studies to complete our synthesis. Notably, specific barriers and experiences may differ between children and youth, particularly when considering those under or over 18. Those under 18 may face unique barriers regarding reliance on parents for support, transportation, finances, and consent for medical procedures. Those over 18 may face different barriers in potentially living independently and having varying support from biological or chosen families. There are also differences in clinical needs and treatments offered to children and youth as described in the introduction. Overall, our study was limited as it combined these two populations and did not have sufficient data to differentiate the experiences of children and youth.
The research methodology of the included papers also limited quality appraisal. Although the CASP checklist is designed to appraise primary qualitative studies, it was chosen due to its strength in providing easy to follow guidelines for researchers to systematically identify the strengths and weaknesses of a study (Critical Appraisal Skills Programme, Citation2018; Sattar et al., Citation2021). It was used to appraise the mixed-methods studies included in this synthesis as only qualitative data was extracted from these papers, and this was the most appropriate tool available for this purpose. Using this checklist for mixed-methods studies limited the accuracy of their quality ratings, as assigning numerical quality scores based on methodological strength does not speak to the conceptual strength of each study (Sattar et al., Citation2021).
Future implications for policy, practice and research
Future policy and practice
Policy and practice in telehealth are closely connected. Policy support for telehealth implementation and sustainability ensures a legal and regulatory environment that protects providers and patients and supports the infrastructure required to deliver quality service, setting the possibilities for practice. Recognizing that telehealth governance structures vary by country we draw on a recent Canadian virtual care framework as an example of how key policy enablers can support sustainable and equitable telehealth (Health Canada, Citation2021). We consider our findings in relation to three policy pillars of this framework: patient and community-centered approaches, equity in access to virtual care services, and appropriateness, safety, and quality of services (Health Canada, Citation2021).
Patient and community-centered approaches to designing and implementing virtual care policy can lead to culturally safe and trauma-informed virtual care (Health Canada, Citation2021). The findings of our meta-ethnography show that TGD children and youth are a marginalized community who have specific preferences and needs when using telehealth. Patient and community-centered approaches are required to explore expectations and perspectives on the use of virtual care and sequentially design virtual care with their input to address issues such as access, quality, and privacy (Health Canada, Citation2021). For example, our findings show this population benefits from having choices for representation or the way in which they feel seen using telehealth. The development of future telehealth technologies should consider diverse modalities and rely on the experiences of TGD children and youth to facilitate feeling seen in the way the user desires. In practice, clinicians/telehealth developers should offer options for turning the camera on or off at different points in the visit as necessary or to display different names or pronouns on screens, avatars, characters, etc.
Accessible digital health resources as well as support for the skills required to use technologies must be available for all users, otherwise the risk of exacerbating health inequities may increase (Antonio et al., Citation2019). If TGD children and youth have more knowledge of how to operate telehealth technologies, this might allow technology to function better or at least allow users to troubleshoot technological issues as they arise independently. This knowledge may also allow patients to use more advanced technologies to bridge the gap in some of the current discrepancies in telehealth conducted physical exams/vital signs.
Future policy needs to consider providing equitable access to technology for virtual care regardless of income or geographic location. Our findings support the presence of a digital divide or a lack of technological resources inhibiting the use of telehealth for some but also allude to how telehealth breaks down barriers associated with traditional healthcare, such as time, money, and effort. Consideration of the intersecting barriers to virtual care experienced by marginalized populations, such as a lack of affordable broadband or equipment or the cost of using virtual care itself, needs to be integrated into policy development (Fang et al., Citation2019). In practice, clinicians should assess income, access to equipment, and rural status among TGD children and youth, as this may serve as a barrier to using telehealth.
Ensuring that telehealth policy outlines standards for appropriateness, safety, and quality of services affirms the need for virtual care that is just as safe as in-person care and does not sacrifice quality in its provision (Health Canada, Citation2021). Our findings emphasize the importance of feeling safe for TGD children and youth and for quality telehealth that maintains its technological function and clinical appropriateness.
In developing diverse telehealth modalities, privacy and confidentiality should also be consistent regardless of the platform (i.e. video conferencing, telephone, apps, games, etc.). Future policy should specifically dictate standards of care that assert how the safety of users and their information is protected when using virtual care and which services are appropriate for telehealth modalities (Health Canada, Citation2021). Caution is also required in planning the implementation of telehealth programs to ensure that its provision does not inadvertently decrease access to in-person care, especially for those in rural areas. The safety of TGD children and youth should be assessed in each clinical telehealth encounter due to fears this population commonly experiences regarding confidentiality, personal safety, and their health information being overheard.
Future research
As outlined above, our meta-ethnography relied heavily on the qualitative portions of mixed-methods studies to develop our results. The lack of purely qualitative primary research and the absence of rich thematic analysis in these mixed-methods studies speaks to the need for this type of research in the future to inform policy and best practices for caring for this population.
Another pertinent topic for future research would be to further explore embodiment using telehealth for TGD children and youth, as this research has not yet been conducted with this population. Research in this area may provide further insights into how TGD bodies are represented or ‘feel seen’ when using telehealth and the implications of this for gender affirming care.
Finally, further research needs to be conducted on developing advanced models of telehealth for working with diverse populations. Technology is continuously advancing, and in general, further research must be conducted on telehealth technology, such as artificial intelligence, three-dimensional platforms, and virtual reality. Once these models of care are better understood, they could offer enhanced accessibility, safety, representation, and technology function for TGD children and youth and other equity-seeking groups.
Conclusion
TGD children and youth have poor access to healthcare, which results in health-related disparities across the lifespan. Further qualitative research on the experiences of TGD children and youth using alternative care modalities, such as telehealth, is needed to understand how this type of care can improve care access for this population. This meta-ethnography synthesized the qualitative experiences of TGD children and youth using telehealth. Findings identified factors including feeling safe, feeling seen, ease of access, and technological affordances as meaningful for this population when using telehealth. These themes were contextualized in the novel Trans-IT model for design principles to consider when developing telehealth for TGD children and youth. These results are significant for understanding how telehealth policies and practices can be developed and modified to align with the preferences of TGD children and youth. These findings may also inform how future telehealth technology may be engineered while considering inclusivity and accessibility for TGD children and youth.
Ethical approval
For this type of study formal consent is not required. This article contains no studies with human participants or animals performed by any of the authors.
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The authors would like to thank Dr. Kristopher Wells for reading an earlier version of this project and providing feedback.
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References
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