“This Could Mean Death for My Child”: Parent Perspectives On Laws Banning Gender-Affirming Care for Transgender Adolescents
Abstract
Objectives
Numerous US state legislatures have proposed bills to ban gender-affirming medical interventions for minors. Parents and caregivers play a critical role in advocating for and supporting their transgender and gender-diverse youth (TGDY). We aimed to understand parent and caregiver perspectives about this potential legislation and perceived effects on their TGDY’s mental health.
Methods
We developed and launched a social-media based, anonymous online survey in February 2020 to assess parent and caregiver perspectives on proposed laws to ban gender-affirming medical interventions for minors. Participants were asked to respond to two open-ended questions about these laws; responses were coded to identify key themes.
Results
We analyzed responses from 273 participants from 43 states. Most identified as white (86.4%) female (90.0%) mothers (93.8%), and 83.6% of their TGDY had received gender-affirming medical interventions before age 18 years. The most salient theme, which appeared in the majority of responses, described parent and caregiver fears that these laws would lead to worsening mental health and suicide for their TGDY. Additional themes included fear their TGDY would face increased discrimination, lose access to gender-affirming medical interventions, and lose autonomy over medical decision-making due to government overreach.
Conclusions
In this convenience sample, parents and caregivers overwhelmingly expressed fear that the proposed legislation will lead to worsening mental health and increased suicidal ideation for their TGDY. They implored lawmakers to hear their stories, and to leave critical decisions about gender-affirming medical interventions to families and their medical providers.
Introduction
Transgender and gender diverse youth (TGDY), who identify with a gender different than their assigned sex, face significant stigma1–2 and are at increased risk for mental health concerns including 2-3.5 times higher rates of suicidal ideation compared to non-TGDY.3–7 Gender-affirming medical interventions include pubertal suppression, hormone therapy, and surgery, and can help mitigate these mental health risks by reducing structural stigma faced by gender diverse people. One study found that transgender adults who had access to pubertal suppression as youth had 70% lower odds of lifetime suicidal ideation compared to transgender adults who desired pubertal suppression but did not have access adjusting for demographic factors and level of family support.8 Other studies have shown associations between reductions in anxiety, depression, and suicidality and increases in quality of life with the use of puberty blockers and gender-affirming hormone therapy.9–12
Parents and caregivers attempting to access gender-affirming care for their TGDY face numerous barriers including a limited number of trained pediatric gender care providers, inconsistent insurance coverage, and varying protocols.13 In addition to these challenges within the healthcare system, there has been a recent push to legislate this care.14–15
As of February 2020, at least 57 bills had been filed in United States (US) state legislatures to restrict access to gender-affirming medical interventions.14–15 These bills would bar medical providers from prescribing gender-affirming hormone therapy (including puberty blockers) or performing gender-affirming surgeries on adolescents under age 18 years.14–15 In addition to prohibiting specific medical interventions, these bills would also mandate jail time and fines for medical providers, and in some cases parents, who seek to provide TGDY with gender-affirming medical interventions.14,16 Such efforts have been opposed by national and international organizations supporting TGDY including the American Academy of Pediatrics (AAP) and the World Professional Association for Transgender Health (WPATH).17–18
Parents and caregivers play a critical role in the health and well-being of their TGDY20–23, and their consent is required to pursue gender-affirming medical interventions for minor children.24 To our knowledge, no studies have explored parent and caregiver perspectives on these bills, further underscoring the need to hear parent perspectives on these challenges to access to care. Given the ongoing legislative effort to ban these interventions, and the current lack of research assessing parent and caregiver views, this study sought to understand parent and caregiver perceptions of this recently proposed legislation aimed at limiting access to gender-affirming interventions.
Methods
Study Setting & Recruitment
We recruited participants across the US through email listserves, discussion boards, and Facebook groups specific to parents and caregivers of TGDY. Parent stakeholders aided in recruiting a geographically diverse sample by distributing the survey link to their online networks. Inclusion criteria included living in the US and: 1) Being the parent or caregiver of a TGDY under age 18 years or 2) Being the parent or caregiver of a transgender or gender diverse adult age 18 years or older who received a gender-affirming medical intervention prior to their 18th birthday. The survey was only available in English.
Survey Development & Content
Participants electronically provided consent and accessed a self-administered, anonymous online survey in February of 2020 via an online link. At the beginning of the survey, participants were provided with the following information: “Several state legislatures in the United States are currently considering laws that would make gender-affirming care, specifically puberty blockers (leuprolide, histrelin), hormones (estrogen, testosterone), and surgeries illegal for anyone under the age of 18 regardless of parent/caregiver consent.” Participants were asked to provide their thoughts about these proposed laws in two separate open-ended survey questions: “What do laws like this mean to you as the parent or caregiver of a gender diverse child? How do you think laws like this would have impacted or could impact your child?” In addition, participants provided demographic information for themselves and their TGDY, and information on any gender-affirming medical interventions their child received. Participants did not receive compensation. This study was deemed exempt by the institutional review board (STUDY20010243).
Researchers
The authors involved in this work represent a diversity of identities that informed the design and analysis of this study. Our group includes cisgender, transgender, queer and non-queer-identified individuals, as well as the parent of a transgender child, and medical and behavioral health clinicians with expertise in gender-affirming medical interventions for TGDY. In addition to the primary research team, we collaborated with a local stakeholder group of parents of TGDY using a community-based participatory research model. This group of stakeholders was involved in the design of the survey, social media recruitment, and validation of themes.
Data Analysis
We evaluated quantitative sociodemographic data using Stata (v15.1), and employed an inductive thematic analysis approach for free-text responses.25 Two members of the study team iteratively reviewed all qualitative survey responses to develop a de novo codebook with 33 total codes, and then independently coded all responses in Microsoft Word via coder comments, utilizing multiple spot checks by each coder and adjudication of all discrepancies to full agreement. A third member of the team adjudicated any differences in interpretation between the two coders. We identified primary themes across the data and validated them through consultation with parent stakeholders who reviewed a subset of the data and provided feedback on data interpretation and proposed themes.
Results
Of the 326 individuals who accessed the survey link, 94.2% (n=307) indicated that they were the parent or caregiver of a TGDY and 93.6% (n=305) consented to participate in the study. Of those who consented to participate in the study, 89.5% (n=273) met the eligibility criteria and were included in the analysis; six were excluded for living outside of the US, and 26 were excluded for indicating that their adult child did not have gender-affirming medical interventions prior to their 18th birthday. Participants resided in 43 US states. Most (93.8%) identified as mothers and female (90.0%) (Table 1). The majority were white (86.4%) and had children who were assigned female at birth (71.4%). We identified four dominant themes from qualitative survey responses that are summarized below with representative quotes. All themes centered around fear with regard to the proposed legislation. Additional representative quotes are in Table 2.
Table 1.
Participant Demographics
| Survey Participants (N=273) | |
|---|---|
| PARENT/CAREGIVER | |
| Relation To Transgender or Gender Diverse Child | |
| Mother | 256 (93.8%) |
| Father | 15 (5.5%) |
| Nonbinary parent | 1 (0.4%) |
| Grandmother | 1 (0.4%) |
| Gender Identity* | |
| Female | 251 (90.0%) |
| Male | 16 (5.7%) |
| Transmale/transmasculine | 2 (0.7%) |
| Nonbinary | 6 (2.2%) |
| Another gender | 3 (1.1%) |
| Prefer not to say | 1 (0.4%) |
| Race/Ethnicity* | |
| American Indian or Alaska Native | 4 (1.4%) |
| Asian | 4 (1.4%) |
| Black or African American | 2 (0.7%) |
| Hispanic or Latinx | 5 (1.7%) |
| White | 248 (86.4%) |
| Multiracial | 16 (5.6%) |
| Prefer not to say | 8 (2.8%) |
| Home State | |
| Connecticut | 37 (13.6%) |
| Pennsylvania | 32 (11.7%) |
| New York | 23 (8.4%) |
| Texas | 19 (7.0%) |
| California | 15 (5.5%) |
| Illinois | 12 (4.4%) |
| Other** | 135 (49.5%) |
| CHILD | |
| Sex Assigned At Birth | |
| Female | 195 (71.4%) |
| Male | 71 (26.0%) |
| Prefer not to say | 7 (2.6%) |
| Gender Identity* | |
| Female | 56 (16.6%) |
| Male | 133 (39.3%) |
| Transfemale/transfeminine | 23 (6.8%) |
| Transmale/transmasculine | 76 (22.5%) |
| Nonbinary | 39 (11.5%) |
| Agender | 3 (0.9%) |
| Another gender | 6 (1.8%) |
| Prefer not to say | 2 (0.6%) |
| Age (In Years) | |
| 12 & Under | 64 (23.4%) |
| 13-15 | 80 (29.3%) |
| 16-17 | 66 (24.2%) |
| 18+ | 63 (23.1%) |
| Gender-Affirming Medical/Surgical Procedures* | |
| Puberty Blockers (leuprolide injections or histrelin implant) | 100 (27.4%) |
| Hormones (estrogen or testosterone) | 152 (41.6%) |
| Top Surgery | 52 (14.2%) |
| None | 61 (16.4%) |
Table 2:
Additional Representative Quotes from Identified Themes
| Theme 1: Fear of losing their child | It would mean that my son would go back to hating himself every month when he began to menstruate again. The thoughts of hurting himself would return. (Mother of a transgender son from Illinois) Without hormones and surgery my teen would probably have committed suicide. (Mother of a transgender son from Connecticut) My daughter tried to harm herself at an early age due to her misery of having male parts. She only got hopeful when her doctor told her she wouldn’t go through male puberty. Male puberty would kill my daughter. (Mother of a transgender daughter from Ohio) |
| Theme 2: Fear of increased discrimination | If she had been younger, and been told that she couldn’t get the hormones, the medicine that would help her overcome this problem, she would have been devastated. The message would have been that she is so very wrong, disordered, hopeless that she isn’t even worth treatment. And that leads to profound mental health issues and suicide. (Mother of a transgender daughter from Ohio) Even if they don’t pass, just the news cycle letting him know that people hate him, despise him, and have no larger concerns than to dispose of his very existence is a very trying experience. (Father of a transgender son from South Dakota) The very existence of these laws, regardless that they are in other states, renders my child less safe. They encourage and legitimize hate. The idea that the government can raise children better than the parents is absurd. (Mother of a transgender daughter from New Jersey) |
| Theme 3: Fear of losing access to care | They mean forcing my child to suffer needlessly through puberty, and sentencing him to a lifetime of painful surgeries to try to undo the effects of puberty and emotional trauma from his inability to easily pass as a man. Right now, as a pre-puberty 13-year-old transgender male, he passes easily. If he is forced to undergo puberty, he will forever look like a girl and his chance of being happy in his body will be diminished. (Mother of a transgender son from California) I feel this will make things more desperate for those in the affected areas. To know that care is unattainable until after 18 could lead many more to suicide. (Mother of a transgender son from Pennsylvania) This law would take away the ability to provide my child with the medical care she needs. If a law like this were to be passed in my state, we would have to move. If it became federal law we would leave the country. It is unacceptable to force a child to go through the wrong puberty based on the ignorance of other people. (Father of a transgender daughter from North Carolina) |
| Theme 4: Fear of losing autonomy | It is not the role of government to deny medication that has been determined necessary by physicians, psychologists and researchers. (Mother of a transgender daughter from New York) If they were to only be open minded and get to know a transgender youth I don’t know how they couldn’t want to support their decision and realize this isn’t a choice for them, but rather who they are. (Mother of a transgender son from Connecticut) Such laws come across as bigoted and uneducated and threaten the ability of healthcare providers to provide evidence-based care for transgender youth and the ability of families and transgender persons to make decisions for themselves. (Father of a transgender son from Texas) |
Theme 1: Fear of losing their child
Nearly all participants expressed concern that the proposed legislation would lead to worsening mental health outcomes for their children including increased depression, anxiety, gender dysphoria, and suicidal ideation.
This could mean death for my child. (Mother of a transgender daughter from Pennsylvania)
[Proposed laws] mean I have to start fearing, again, that my son will try to take his life because his dysphoria is so bad and he doesn’t have his blocker to stop his body from betraying him. I asked him the other night how he thinks his life would look without them. Without needing to think about it, he said “I’d probably be dead.” He’s 14. (Mother of a transgender son from South Dakota)
If [puberty blockers and hormones] were not available until 181 would have buried my child 1-2 years ago. (Father of a non-binary child from Connecticut)
[Legislators] may as well provide the blade for my child to slit his wrists with. The mental anguish and pain would be unbearable for my child to have to live that way. (Mother of a transgender son from Texas)
Several participants feared that media reporting related to the proposed laws, alone, would harm their TGDY, and some noted that they actively tried to shield their TGDY from learning about the proposed laws.
We’ve been careful not to leave newspapers lying around or tabs open on the internet where he might read about these laws, because just knowing it’s a possibility could send him into a spiral of depression and a return of suicidal ideation. (Mother of a transgender son from South Carolina)
Theme 2: Fear of increased discrimination
Parents and caregivers frequently expressed their fear that these potential laws, and even the proposal of these bills, would make their children less safe due to increased discrimination and violence against TGDY. They also feared that these laws will make their children feel unseen or unworthy of care.
These laws are transphobic and contribute to violence against gender diverse people. As a parent these laws, and the discussions around them, make me fearful for my children’s safety in the community. (Mother of a transgender daughter from Texas)
These laws mean that my child will face discrimination in healthcare and to an even larger degree within society than exists now. These laws mean that my child, deemed by these lawmakers as unimportant enough to care for, will likely face debilitating gender dysphoria and the very real possibility of suicide. (Mother of a transgender son from Florida)
Having a law like this would mean a whole community and group of people are actually not people. They are being refused to be seen or heard or have their needs met. This is full on discrimination. (Mother of a non-binary child from Massachusetts)
Theme 3: Fear of losing access to care
Participants frequently referenced the need for access to gender-affirming medical interventions and the potential ramifications of losing access. Participants described how access to care, particularly during puberty, improved safety for their TGDY through increasing the ability for their child to be recognized by others as their affirmed gender. They also emphasized that medical interventions, particularly puberty blockers, can prevent the need for surgeries in the future.
My child started on puberty blockers a year ago. Since then, she has been so much happier and less anxious. Blockers allow her to pause puberty, and give her time to process her thoughts and feelings. Had she continued through a male puberty, she would have had irreversible physical changes that would put her at a higher risk of harassment and harm in the future. (Mother of a transgender daughter from Oklahoma)
If he had been able to take puberty blockers, we would have been able to avoid costly, painful, and serious surgery. (Mother of a transgender son from Oregon)
Many participants expressed concern that the proposed laws would result in reduced access to gender-affirming medical interventions for their TGDY.
If we were unable to provide this medical treatment to him when he was a minor, his life would have remained unbearable to him, and he would have missed out on so much. He now attends college on a scholarship, is in a STEM program, has friends, a part-time job, and most of all, from the day after the surgery, once again became our joyful, engaging, loving child who we once had. (Mother of a transgender son from Florida)
My daughter tried to harm herself at an early age due to her misery of having male parts. She only got hopeful when her doctor told her she wouldn’t go through male puberty. Male puberty would kill my daughter. (Mother of a transgender daughter from Ohio)
Access to care was so important to participants that several were planning to or willing to move their family to a different state or country to ensure their child would have care.
I live in West Virginia. Unfortunately, although we live in a somewhat progressive area, the larger state often votes consistent with conservative ignorance. I think we’re very much at risk here. Unfortunately, if laws are passed, it may mean that we will have to move. (Mother of a non-binary child from West Virginia)
We are military and I’m scared to death about getting military orders to a state that is not LGBTQ friendly. These laws would make my husband have to take orders unaccompanied for 2 years. Basically this will separate our family for 2 years, just due to ignorance by the lawmakers. (Mother of a transgender son from Pennsylvania)
Theme 4: Fear of losing autonomy
Many participants felt that these proposed laws, and potential reasons behind their proposal (i.e. religion, political gain, ignorance), were an attack on their or their TGDY’s autonomy through denial of their lived experiences. Some described the proposed laws as government overreach. Few participants referenced support for this kind of legislation or a need for guidelines on age and use of these interventions. Most emphasized that these are not decisions that governments should make.
No one, especially the government, can do a better job than me and my husband at this job. No one can love them harder. No one can struggle more and lose more sleep. No one can balance their needs and guide them and seek the medical treatment they need with more compassion and care than their parents. I do not need the government in my way. I certainly do not need the government to protect my children from their own parents. (Mother of a transgender daughter from New Jersey)
Many participants felt the proposed laws come from a place of ignorance or fear.
These laws are an abhorrent result of bigotry and ignorance. (Mother of an agender child from New Jersey)
Though multiple participants indicated that their religious and spiritual beliefs were important in helping them support their TGDY, many also felt the proposed laws were associated with religiosity.
This is an attack on our God’s wonderful creation, our child. The joy we see in our child’s face now that we have affirmed who God made her to be is so uplifting and transforming. (Father of a transgender daughter from Illinois)
It means that my child is a target of radical right wing politicians who choose to ignore medical science to further their religious agenda. (Mother of a transgender daughter from Georgia)
Several participants shared that, despite speaking out about the importance of gender-affirming care, they felt ignored.
The legislators who have proposed these laws most certainly aren’t listening to the people who have personal lived experience as members of the trans/non-binary community and their families. Many of us have been trying to share our stories in hopes that lawmakers will listen but we’re being ignored. (Mother of a non-binary child from Washington state)
Many participants felt that lawmakers needed to meet TGDY to understand why gender-affirming medical interventions are important.
People who meet her have no clue, but when they find out, and spend time with her, it changes minds of the most hardened people. Laws like this are harmful, and being written by people who are ignorant to the transgender community. (Mother of a transgender son from Wyoming)
Finally, many participants felt that decisions about gender-affirming medical interventions should be left to the TGDY, their families, and their medical team.
We as parents are not blindly allowing our children to dictate unnecessary care/procedures. We are having thoughtful, deep conversations to be certain that we are understanding the true needs of our children. (Mother of a transgender son from Pennsylvania)
These decisions should be made between a doctor and the patient, and if the patient is under 18 by the parent/caregiver. (Mother of a non-binary child from Connecticut)
Discussion
Given the critical role that parents and caregivers play in helping their children navigate care, this study elicited parent and caregiver perspectives on proposed legislation that would ban gender-affirming medical interventions for minors. National and international organizations including the AAP and WPATH have issued statements opposing these efforts17–18, yet in the months since this study was conducted, several more states have proposed similar legislation.26–27
TGDY face significant personal, interpersonal, and structural stigma2 and, have a significantly higher rate of suicidal ideation and suicide attempt than their non-TGDY peers.3–7 Based on our experience working clinically and in research with TGDY and families, as well as consultation with parent stakeholders, we expected that participants would describe fears about the effect these proposed bills could have on their child’s mental health. However, the extent to which participants expressed fears of their TGDY committing suicide as a direct result of this legislation was far greater than anticipated.
Parents expressed concern that this legislation may increase gender-related discrimination and violence, compounding the increased risk of victimization that TGDY already face.7 They viewed the medical care their child has received or hopes to receive as life-saving, and worried that care being withheld would cause harm. This concern is supported by studies showing improved mental health outcomes and reduced suicidal ideation for those TGDY with access to gender-affirming care,8–12 and aligns with our understanding of how structural stigma at the community and institutional level can engrain discriminatory ideology that furthers harm against TGDY.1–2
Many parents and caregivers noted that access to gender-affirming medical interventions was already challenging due to other factors (e.g., lack of providers with expertise in gender-affirming care in all geographic regions), and that opportunities for care would be further limited by these laws. Prior qualitative studies identified challenges related to finding a trained gender-affirming provider, particularly in pediatrics.13,28 If faced with additional challenges via proposed legislation, participants in this study were willing to travel or move their family to another US state or country because they view this care as vital to their TGDY’s well-being.
Parents and caregivers frequently questioned the motivation behind the proposed laws, noting that they were a violation of their and their children’s rights, and felt like government overreach. A small minority of participants agreed with some tenants of this proposed legislation citing concerns about gender-affirming care for youth or suggesting age limitations. Current guidelines from the AAP, the Endocrine Society, and WPATH already provide guidance on age.24, 29–30 Most participants noted that they (parents and caregivers) were the only ones who should have the right to make important decisions about medical interventions for their child. Further, parents and caregivers felt ignored. They emphasized that lawmakers need to listen to the perspectives of TGDY and their parents and caregivers, and to leave medical decisions to young people, their families, and their providers.
Clinicians are uniquely positioned to elevate the voices of patients and families as well as to challenge legislation that would increase structural stigma and further limit their ability to provide evidence-based care for this highly vulnerable population. Pediatric and adolescent providers have27, 31–32 and should continue to speak out against efforts that they, and the parents in this study, know would harm gender diverse youth.
This study has a number of limitations. Due to recruitment through email listserves, discussion boards, and Facebook groups, this convenience sample may reflect only a subset of parents and caregivers of TGDY, specifically those who are more connected to other TGDY and families and more vocal advocates about supporting TGDY and their access to affirming interventions. The majority of the sample identified as white and as mothers of TGDY, and the results of this study are therefore not generalizable to other types of parents including those from diverse backgrounds. Further research should specifically elicit the experiences of families of color, fathers, and other caregivers. Despite these limitations, this study is the first to capture parent and caregiver views of proposed legislation that has the potential to significantly impact their TGDY. This sample is geographically diverse and united in expressing their fear in the harm that could come from this proposed legislation.
Conclusion
Parents and caregivers of TGDY overwhelmingly expressed fear that proposed legislation banning gender-affirming medical and surgical interventions for minors would lead to worsening mental health outcomes and increased suicidal ideation for their children. They implored lawmakers to listen to their perspectives and to halt revoking their parental right to make informed decisions about care with their TGDY and their medical providers.
Acknowledgements
The authors would like to thank the parents who participated in this study as well as parent members of the local stakeholder group: Joel Burnett, Johanna Burnett, Kelly Dembiczak, January Furer, Jamie Mullin, Katia Nascimento, Dave West, and Michele West. This work was supported by the National Center for Advancing Translational Science of the NIH under award number TL1TR001858.
Abbreviations
| TGDY | Transgender & Gender Diverse Youth |
| US | United States |
| AAP | American Academy of Pediatrics |
| WPATH | World Professional Association for Transgender Health |
Footnotes
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