Quality of Life and Mental Health in Caregivers of Individuals with Gender Incongruence: A Narrative Review

1. Introduction

Gender incongruence, as defined by the World Health Organization in the International Classification of Diseases, 11th Revision (ICD-11) [1], refers to a marked and persistent incongruence between an individual's experienced gender and the sex assigned at birth. In the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) [2], the diagnosis of gender dysphoria is used to describe the clinically significant distress that may accompany this incongruence. Although these diagnostic frameworks primarily focus on the individual, clinical and relational literature suggests that gender-related distress and its therapeutic management often extend beyond the person, substantially involving the family system and, in particular, primary caregivers.

Caregiving in the context of gender incongruence is not a neutral or peripheral experience, but rather a complex process that may profoundly affect caregivers' emotional, psychological, and relational well-being. Qualitative studies have documented that parents and family members of transgender (TGN) and gender-diverse individuals (GDI) frequently experience heightened levels of anxiety, uncertainty, fear for their child's safety, and chronic emotional burden, particularly during early phases of gender disclosure and initiation of gender-related care [3,4,5]. Despite increasing attention to mental health outcomes among TGN populations, the subjective experiences of caregivers remain relatively underexplored, especially with regard to perceived quality of life (QoL) and longer-term adaptive processes.

From a clinical perspective, medical aspects of gender-affirming care represent a central source of stress for caregivers. Endocrinologists’ decisions related to puberty suppression, hormone therapy, and gender-affirming surgeries often involve complex, time-sensitive choices that carry significant emotional and moral weight [6]. These decisions are frequently made within contexts characterized by evolving scientific evidence, polarized public discourse, and, at times, inconsistent professional guidance [5]. Such conditions may intensify decisional anxiety, fear of irreversible outcomes, and perceived parental responsibility.

Within this framework, although not directly focused on caregivers, recent clinical contributions based on case-studies provide additional insight into the psychological complexity of gender-affirming medical pathways [7,8,9]. Indeed, these care pathways are characterized by clinical complexity, prolonged uncertainty, and need for multidisciplinary coordination [10]. The complexity and uncertainty inherent in medical decision-making may indirectly shape caregiver stress, particularly when caregivers are actively involved in supporting and navigating these processes.

Overall, empirical research specifically addressing the mental health and QoL of caregivers of individuals with gender dysphoria or gender incongruence remains limited and predominantly qualitative. Considering these issues, the present narrative review aims to critically synthesize available evidence on psychological distress, emotional burden, and perceived QoL among caregivers of TGN and g-ender-diverse individuals. By identifying key-sources of risk and protection, including social support, parental empowerment, and advocacy processes, this review seeks to provide clinical practice insights supporting the development of integrated medical-psychological models that explicitly recognize caregivers as relevant actors within gender-affirming care process.

2. Materials and Methods

We conducted a narrative exploratory review aimed at synthesizing available empirical and theoretical evidence on the mental health and perceived QoL of caregivers of individuals with gender dysphoria or gender incongruence. A narrative approach was selected in light of the limited availability of empirical studies, the predominance of qualitative research designs, and the substantial heterogeneity of methodologies and outcome measures characterizing this emerging field. This approach allows for in-depth conceptual integration of findings and is particularly suited to underexplored and complex research areas.

A targeted literature search was conducted using PubMed, Scopus, PsycInfo and Google Scholar. Reference lists of eligible articles were also hand-searched to identify additional relevant studies not captured through database searches. Records were screened for relevance based on titles and abstracts, with selection guided by consistency with the aims of the review.

Search terms were combined using the following keywords: "gender dysphoria", "gender incongruence", "transgender", "gender-diverse", "caregivers", "parents", "family", "mental health", "psychological distress”, “quality of life”, "QoL", "stress", and "burden". The search focused on articles published between 2015 and 2025, reflecting contemporary diagnostic frameworks [1,2] and current models of gender-affirming care.

Studies were included if they explicitly focused on caregivers or family members (predominantly parents) of TGN or GDI and addressed caregivers' psychological experiences relevant to mental health, emotional distress, stress, coping, or perceived QoL. Only studies published in peer-reviewed journals and written in English were considered. To preserve conceptual and clinical specificity, studies addressing broader LGBTQ+ populations without an explicit focus on caregivers of TGN or GDI were intentionally excluded. Editorials, opinion papers, and studies in which caregiver-related outcomes could not be clearly distinguished from those of the TGN or GDI were also excluded.

Although several included studies did not assess caregiver mental health or QoL using standardized quantitative instruments as primary outcomes, they were retained because they provided essential qualitative insight into caregivers' emotional burden, stress processes, relational dynamics, and meaning-making trajectories that directly inform psychological well-being and perceived QoL. This decision is consistent with the exploratory and narrative aims of the review and reflects the methodological characteristics of the existing literature.

For each included study, key information was extracted regarding study design, caregiver sample characteristics, developmental stage of the TGN or GDI, caregiver-related psychological domains addressed, and reported risk and protective factors.

Given the heterogeneity of study designs, samples, and outcome domains, findings were synthesized narratively using a thematic approach. The synthesis focused on identifying recurring patterns related to caregivers' emotional distress, minority stress experiences, medical decision-making, and perceived QoL, with particular attention to relational, contextual, and process-oriented dimensions of caregiving.

3. Results

The initial literature search identified approximately 140 records across the selected databases. After removal of duplicates and screening of titles and abstracts for relevance, 28 articles were reviewed in full text.

Following full-text assessment, six studies met strict inclusion criteria as core empirical contributions directly addressing caregivers' psychological distress, burden, or related mental health experiences and were retained as the primary evidence base for the narrative synthesis.

In addition to these core studies, a total of 16 studies were included in the review to provide a broader conceptual and contextual understanding of caregiver experiences. Table 1 summarizes the characteristics of all included studies and presents them in chronological order to illustrate the evolution of research on caregivers of TGN and GDI.

The literature summarized in Table 1 includes both caregiver-focused qualitative evidence and contextual family-process contributions. Across this corpus, studies predominantly involve parents of TGN and gender-diverse children or adolescents, with comparatively fewer contributions addressing caregivers of TGN adults or caregiving configurations beyond parenthood.

The available literature is characterized by a predominance of qualitative methodologies, small to moderate sample sizes, and a focus on parental perspectives within Western sociocultural contexts, particularly North America. Most studies employed semi-structured interviews, thematic analysis, or qualitative content analysis. None of the included studies directly assessed caregivers' QoL using standardized QoL instruments; instead, caregiver well-being was inferred through reported emotional distress, stress-related symptoms, relational strain, and adaptive or maladaptive coping processes.

3.1. Emotional Distress and Mental Health Burden in Caregivers

Across qualitative and mixed-method studies, caregivers of TGN and GDI consistently report elevated levels of emotional distress, characterized by pervasive anxiety, chronic stress, emotional exhaustion, and heightened vigilance. This distress does not appear as a secondary reaction limited to later stages of medical decision-making, but rather emerges early in the caregiving trajectory, often coinciding with the initial disclosure of gender incongruence and the first encounters with social, educational, and healthcare systems [8,9,13].

A recurring phenomenological pattern involves persistent worry related to the child’s psychological well-being, physical safety, and social exposure. Caregivers frequently describe a state of continuous alertness, marked by fears of bullying, discrimination, and social rejection, particularly within school environments and peer contexts. This hypervigilant stance tends to become emotionally taxing over time, contributing to feelings of fatigue, helplessness, and progressive depletion of personal emotional resources [13,17].

Importantly, several studies indicate that such distress is present even in the absence of formal diagnostic assessments or irreversible medical interventions. Gray et al. highlighted that caregivers often experience intense emotional burden during early stages of identity exploration, when uncertainty is high and access to reliable information and specialized support is limited [13]. Similarly, Chen et al. observed that parental stress is strongly associated with navigating school systems, negotiating disclosure decisions, and managing anticipated stigma, rather than with the medical aspects of gender-affirming pathways per se [17]. Taken together, these findings suggest that caregiver distress is less driven by specific clinical procedures and more by prolonged exposure to ambiguity, responsibility, and perceived social threat.

Another salient dimension of caregiver distress concerns the internalization of responsibility for the child’s future outcomes. Many caregivers report a strong sense of moral weight and anticipatory guilt, particularly in relation to decisions perceived as potentially determining long-term well-being, social integration, and mental health. This perceived responsibility often coexists with doubts about personal competence, fears of making irreversible mistakes, and the absence of clear societal or institutional guidance, further amplifying emotional strain [8,9].

Overall, literature portrays caregiver distress as a multifaceted and temporally extended process, shaped by uncertainty, hypervigilance, and sustained emotional labor. Rather than a transient reaction to discrete events, distress appears embedded within the caregiving role itself, evolving across developmental stages and social contexts. These proximal emotional burdens interact with broader sociocultural and structural factors, which will be examined in subsequent sections, particularly in relation to minority stress and sociopolitical climates.

3.2. Anticipatory Anxiety and Future-Oriented Distress

The Trans Youth Family Study examined how TGN and gender-nonconforming youth and their caregivers mentally represent the youth’s future [3]. Through qualitative interviews with 16 families, caregivers frequently reported uncertainty and concern regarding long-term outcomes, including discrimination, social acceptance, and physical and emotional safety. These concerns were characterized not as transient stress reactions, but as a persistent form of future-oriented psychological distress, marked by anticipatory worry and heightened vigilance [3,8,9].

3.3. Ambiguous Loss, Uncertainty, and Non-Linear Adaptation

Across qualitative studies, caregivers of TGN and GDI frequently report experiences consistent with ambiguous loss, particularly during early developmental stages. This form of loss does not concern the child as a person, but rather the disruption of anticipated narratives, imagined futures, and previously held assumptions regarding identity and life trajectories [3,8,9].

Qualitative evidence highlights how ambiguous loss is embedded in relational and non-linear processes of adaptation rather than resolved through diagnostic certainty or expert-driven models. A Canadian qualitative study described how caregivers move through phases of fear, confusion, and uncertainty, gradually developing meaning through sustained relational attunement to their children’s verbal, affective, and embodied communication [14]. Within this process, parents often relocate the source of distress from the child to broader social and institutional contexts, actively rejecting pathologizing interpretations of gender non-conformity.

Findings from the Trans Youth Family Study further illustrate how ambiguous loss coexists with future-oriented uncertainty, concerns about physical and emotional safety, and reflections on social and relational outcomes, without implying disengagement or rejection [3]. Rather, caregivers remain emotionally and relationally invested while navigating unresolved uncertainty and shifting meanings over time.

This non-linear adaptation is also reflected in studies adopting ecological and family-based frameworks. Gray et al. described caregiving as a dynamic process characterized by persistent worry, heightened vigilance, and movement between protective and affirming strategies in response to anticipated stigma and social pressures [13]. Similarly, ethnographic and interview-based studies documented sustained emotional strain related to discrimination, social exposure, and everyday relational contexts, alongside continued commitment to the child’s well-being [9,15].

Overall, ambiguous loss emerges as a central emotional process in TGN caregiving, marked by the coexistence of grief, uncertainty, and relational closeness. This framework underscores the relational and evolving nature of caregiver adaptation and highlights the importance of clinical approaches that acknowledge parental grief without framing it as detachment or lack of acceptance [4].

3.4. Medical Decision-Making as a Central Stressor

Across qualitative studies, medical decision-making consistently emerges as a central source of psychological burden for caregivers of TGN and youth GDIs. Parents frequently describe feeling overwhelmed by the strong responsibility of supporting or authorizing decisions related to puberty suppression, gender-affirming hormone therapy, fertility preservation, and potential future surgical interventions, particularly within contexts characterized by uncertainty, limited access to specialized services, and inconsistent clinical guidance [5,7,8,9].

Caregivers often report engaging in extensive information-seeking behaviors to compensate for perceived gaps within healthcare systems. While accessing online and informal resources may foster a sense of agency, this process is frequently accompanied by emotional burden, decisional uncertainty, and anxiety related to conflicting information, misinformation, and the perceived weight of responsibility for making “right” choices on behalf of their children [7].

Medical decision-making is further shaped by broader sociopolitical contexts. In settings marked by legislative threats to gender-affirming care, caregivers describe heightened anticipatory anxiety, moral distress, and feelings of powerlessness, framing medical decisions as existential dilemmas directly tied to parental responsibility, attachment, and fears of irreversible psychological harm [5].

Complex decisions surrounding fertility preservation represent a particularly salient stressor. Caregivers report elevated decisional conflict when weighing the urgency of gender-affirming treatment against concerns about potential future regret related to fertility loss [6]. These decisions are often complicated by adolescents’ developmental stage, evolving identity trajectories, and the inherent difficulty of translating probabilistic medical information into meaningful long-term implications, intensifying emotional burden and moral tension [22].

Overall, medical decision-making functions as a psychologically dense and emotionally charged process rather than a purely clinical task. These findings highlight the need for integrated, multidisciplinary approaches that attend not only to medical information, but also to caregivers’ emotional experiences, decisional conflict, and relational concerns throughout gender-related care pathways.

3.5. Minority Stress and Social Stigma as Secondary Stressors

Beyond medical decision-making, caregivers consistently report significant psychological burden arising from sociocultural stressors, including stigma, discrimination, and social rejection. Qualitative evidence indicates that caregivers frequently experience forms of secondary or vicarious minority stress, whereby stigma directed at TGN and GDI extend to the family system, shaping caregivers’ emotional well-being and daily functioning [5,7,8].

Across studies hereby examined, caregivers describe chronic vigilance, fear for their child’s safety, and sustained exposure to stigmatizing social environments, particularly within educational, healthcare, religious, and community contexts. Ethnographic and interview-based research highlights how repeated encounters with institutional barriers, lack of recognition, and social exclusion contribute to feelings of isolation, emotional exhaustion, and persistent anticipatory stress [12,16].

Importantly, caregivers’ emotional burden appears amplified not only by present experiences of stigma, but also by future-oriented concerns shaped by awareness of discriminatory social norms and anticipated rejection. Findings from the Trans Youth Family Study suggest that caregivers’ worries are embedded within broader sociopolitical climates, in which legislative debates, public discourse, and social attitudes toward gender diversity intensify perceptions of threat and marginalization [5,26].

Overall, minority stress processes function as secondary yet pervasive stressors in TGN caregiving, interacting with emotional distress, anticipatory anxiety, and medical decision-making demands. These findings underscore how caregivers’ psychological experiences are deeply embedded within social and institutional contexts, highlighting the need for interventions that address stigma-related stressors alongside individual and relational processes.

3.6. Protective Factors and Processes Supporting Caregiver Adaptation

Despite the substantial emotional burden documented across studies, the literature also identifies several protective factors and processes that may mitigate psychological distress and support caregiver adaptation over time. These include access to social support networks, affirming healthcare relationships, engagement in advocacy, and participation in community-based or peer-led resources [7,11,12].

Social support from peers, community groups, and extended family consistently emerges as a key protective factor. Caregivers with access to supportive networks, either in-person and online, report reduced isolation, greater emotional resilience, and enhanced capacity to tolerate uncertainty. Participation in peer and online communities has been associated with increased access to practical information and emotional validation, contributing to more adaptive coping [7,21].

Access to knowledgeable and affirming healthcare providers is similarly described as protective. Caregivers who perceive clinical interactions as supportive and informative report greater confidence in medical decision-making and lower levels of anticipatory anxiety.

Conversely, experiences of dismissiveness, lack of provider expertise, or perceived judgment are associated with heightened distress and erosion of trust [7,8].

Engagement in advocacy represents a complex and potentially transformative dimension of caregiving. Several studies indicate that advocacy at family, school, or community levels is associated with increased empowerment, identity reformulation, and adaptive meaning-making, allowing caregivers to reframe caregiving not only as burden but also as a source of relational growth and social engagement [11,12,14]. At the same time, advocacy may entail significant emotional costs, particularly when caregivers encounter resistance, hostility, or systemic barriers.

Overall, these findings underscore the importance of integrating psychosocial support for caregivers within gender-affirming care models. Clinicians and healthcare systems play a critical role in facilitating access to peer networks, providing psychoeducation, and validating caregivers’ emotional experiences as part of comprehensive, family-centered approaches.

4. Discussion

This narrative review examined the existing literature on mental health and QoL among caregivers of TGN and GDI, with particular attention to emotional distress, minority stress processes, and protective factors. Across studies, caregiving in the context of gender incongruence emerged as a distinct psychosocial experience characterized by sustained emotional burden rather than transient stress reactions. Caregivers consistently reported anxiety, fear for their child’s physical and psychological safety, uncertainty related to complex medical decision-making, and experiences of ambiguous loss involving disrupted or previously imagined life trajectories [3,5,8,9].

Importantly, caregiver distress did not appear to stem from the child’s gender identity or transition-related processes per se. Instead, the reviewed evidence highlights an interaction between caregivers’ emotional responses, structural barriers within healthcare systems, and broader sociocultural stigma as central contributors to caregiver burden. This interactional pattern supports the conceptualization of caregiver mental health within an ecological and minority stress framework, in which relational dynamics, institutional contexts, and sociopolitical environments jointly shape psychological outcomes [4,5,7].

Several limitations should be considered when interpreting these findings. The available literature remains limited in scope, predominantly qualitative, and largely focused on parents within Western sociocultural contexts. These characteristics reflect both the emerging nature of the field and the complexity of caregiving experiences rather than methodological shortcomings. While qualitative approaches are particularly well suited to capturing emotional, relational, and process-oriented dimensions of caregiving, this methodological profile constrains generalizability and limits systematic comparisons across studies.

Additionally, most included studies focused on caregivers of TGN children and adolescents, with comparatively limited attention to caregivers of TGN adults or to caregiving configurations beyond parenthood. This represents a significant gap in the literature, given that caregiving demands, relational dynamics, and stressors may differ substantially across developmental stages and family structures. Although several influential contributions derive from the Trans Youth Family Study and related research programs [3], similar patterns of distress, uncertainty, and non-linear adaptation were observed across independent qualitative studies conducted in diverse clinical and sociocultural settings, supporting the broader relevance of the identified themes.

Future research would benefit from longitudinal and mixed-methods designs capable of examining how caregiver mental health and perceived QoL evolve across different phases of gender-related care process, including pre-disclosure, medical decision-making, and longer-term adaptation. The development and validation of assessment tools specifically designed to capture caregiver minority stress, decision-related distress, and QoL represent a critical priority. Greater inclusion of non-Western contexts, caregivers of TGN adults, and diverse family structures would further strengthen the empirical foundation of the field and enhance the ecological validity of future findings.

5. Conclusions

Caregivers of individuals with gender incongruence - particularly parents of TGN and gender-diverse children and adolescents - experience substantial emotional and psychological burden with potential implications for mental health and perceived QoL. At the same time, the literature highlights caregivers’ capacity for adaptation, resilience, and supportive behaviors in the context of complex and sustained stress. Protective factors, including social support, affirming healthcare relationships, and engagement in advocacy, may buffer distress and facilitate psychological adjustment over time. Caregiving trajectories appear non-linear and, in some cases, transformative, evolving from initial fear and uncertainty toward acceptance, empowerment, and strengthened relational bonds.

These findings underscore the importance of integrated medical and psychological support systems that explicitly include caregivers as a core component of gender-affirming care. Clinicians, healthcare systems, and policymakers should ensure caregiver well-being alongside the health outcomes of TGN and GDI, recognizing family-level support as essential to equitable, effective, and compassionate care.