Understanding healthcare autonomy among adolescents and young adults in the United States: a scoping review

Abstract

Purpose:

Maps out the evidence on AYA's autonomy and decision-making in healthcare settings in the United States to provide a comprehensive and synergistic understanding of the barriers, facilitators, and other salient factors that influence autonomous decision-making.

Methods:

This study followed the PRISMA and scoping review methodological frameworks. An electronic database search was performed using Boolean terms based on inclusion/exclusion criteria. Included studies were analyzed using narrative synthesis and thematic analysis techniques.

Results:

The final review comprised 31 studies. Half (n = 16; 52%) focused on adolescent autonomy in specialized care, a third focused on sexual and reproductive healthcare (n = 8, 25%), and the remaining studies focused on general healthcare (n = 6; 19%). Most studies defined autonomy as a primary influence in healthcare decision-making (n = 24; 77%). Other conceptual definitions focused on reproductive decision-making and control (n = 5; 16%) or independent functioning (n = 3; 9%). The literature discussed various barriers and facilitators to AYAs’ sense of autonomy.

Conclusions:

Studies regarding AYA autonomy have historically focused on specific patient populations in specialized healthcare areas. Researchers and practitioners can work towards creating tools to inform and assess interventions to support AYA autonomy in healthcare settings, including programs to improve care for youth.

1 Introduction

Approximately 42 million adolescents aged 10–19 constitute 12.8% of the United States (US) population (1) and the transition from this key demographic from adolescence to adulthood is characterized by emerging independence and autonomy (2). In general, autonomy refers to self-governance or independence; however, personal autonomy can be divided into four dimensions: `1) cognition—the expression of an individual's viewpoint and decision-making without external influence; 2) emotion—the process of individualization; 3) behavior—the ability to take responsibility for one's actions and making decisions for themselves; and 4) moral values—adhering to a set of moral values despite the situation or peer pressure (2–7).

In the healthcare setting, autonomous care may be used interchangeably with patient autonomy, which allows patients to make informed decision about their health that align with their values and preferences without undue coercion or influence (2–4). Autonomous care for adolescents transcends undue influence from health systems to policy and caregiver influences (3–7). As a result, adolescent and young adult (AYA) autonomy has various definitions depending on the setting.

AYA autonomy in the healthcare setting is often defined by legislation, which often differs between states (8). For example, in Texas-based healthcare systems, individuals younger than 18 are considered minors. Minors in Texas can consent to healthcare in certain situations and are allowed specific services without parental knowledge and consent. However, prescription birth control and other adolescent sexual and reproductive healthcare services require parental consent or notification (9). In contrast, minors in California have the right to access birth control (hormonal and non-hormonal methods), abortions, and STI/HIV testing and treatment without parental consent (10). These legislative complexities create a chasm in how healthcare is delivered by healthcare providers (HCPs) and consumed by adolescents.

HCPs are responsible for interpreting complex legislation regarding consent in adolescent healthcare, which can be challenging and restrict services. Many HCPs need more training on the topic, making them cautious to avoid any problems related to this issues (11). When unsure whether it is legal to accept adolescent consent over parental opposition or vice-versa, HCPs may concede decision-making control to parents by default (12). This tendency to default to the conservative position is influenced, in part, by HCPs believing parents hold their children's best interests at heart as they dominate the decision-making process (13).

Unclear policies and procedures in the healthcare setting regarding confidentiality also limit adolescent autonomy (8). Adolescents tend to be less active in discussion and healthcare decision-making during triangulated encounters between themselves, their parent(s), and HCPs (14). Adolescent involvement is further reduced when both parents are involved (15). This raises concerns due to well-known discrepancies between children's health self-reports and parent reports (16). Moreover, many minors are concerned their healthcare choices may be disclosed to their parents/guardians as supported in studies that show confidentiality concerns may prevent adolescents from seeking healthcare (8, 17). The impact of these concerns is much higher regarding potentially sensitive health services such as STI testing or mental health assessments (18, 19). Studies indicate adolescents with confidentiality concerns are less likely to disclose health-related information to their healthcare providers (HCPs), especially regarding issues related to mental health, substance use, and sexual behavior which may contribute to overall negative health outcomes (17).

Adolescent autonomy is a critical aspect of receiving comprehensive healthcare. It is argued that respecting adolescents' autonomy can promote their cognitive capacity to make sound healthcare decisions (20). Globally, it is regarded that children are capable of forming their views have the right to express them freely in all matters affecting them, with their age and maturity considered (21). This statement supports adolescents' right to consent to treatment and confidentiality in healthcare systems. The World Health Organization (WHO) recently created a tool based on principles of patient-centered care to assist assessment and support of adolescents' capacity for autonomous decision-making in healthcare settings (22). Notably, no formal guidelines regarding adolescent autonomy in healthcare were available before this tool was created. Increased understanding of teenage autonomy and healthcare decision-making among adolescents and young adults is imperative to inform standard practice and assess the new tool by WHO. This study aims to map out the evidence on AYA's autonomy and decision-making in healthcare settings in the US to provide a comprehensive and synergistic understanding of the barriers, facilitators, and other salient factors that influence autonomous decision-making.

2 Method

This study employed Colquhoun and colleagues' enhanced scoping review methodological framework, which outlines key processes when conducting a scoping review (23). The first stage involved linking and clarifying the purpose and research questions through deliberation and empirical reasoning, which led to identifying the relevant articles for inclusion in this study. Next, an iterative approach was used to select and extract the relevant data from the chosen articles. Lastly, a data analysis was performed using numerical and qualitative analysis to summarize and report results. A scoping review was appropriate for this study because it helps researchers understand the breadth and scope of adolescent autonomy, which remains an important yet understudied area (23). Moreover, a Scoping review methodology is ideal because it allows us to map and understand the existing literature on adolescent autonomy, identify knowledge gaps, and help map direction for future research, policy, and programs.

2.1 Search strategy

A comprehensive electronic database search of peer-reviewed literature was performed using six databases: Child Development & Adolescent Studies, CINAHL Complete, MEDLINE, Web of Science, PubMed, and PsychInfo from 2000 through March 2022. An updated search was conducted to include articles published from 2022 to 2025. Considering gaps in the literature, we included articles published in the last 25 years to help us provide rich data on existing literature. A Boolean search strategy with the “AND” and “OR” commands was used to extract relevant articles based on the following keywords in different combinations: (adolescent* or teen* or young adults or youth) AND (clinical decision support system or clinical decision making or decision-making) AND (personal autonomy or autonomy* or support for autonomy) AND (United States or America or USA or U.S. or United States of America or U.S.A.). A thorough hand search of each selected article's bibliography was conducted to identify other articles relevant to this study. The search outcomes were reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, as seen in Figure 1.

Figure 1

2.2 Inclusion and exclusion criteria

Articles were required to be published in English and studies were conducted in the United States to be included in this study. We included qualitative, quantitative, and review studies reporting AYA healthcare autonomy in the United States. Based on existing literature, we defined AYAs as individuals between the ages of 10 to 31 years (24). For articles that included AYAs older than 31, only those with at least 50% of AYAs were included in this study. Additionally, we included studies conducted in various healthcare settings such as community centers, hospitals, or other places where AYAs receive health care. Similarly, studies focused on interventions, policy, or research-based (i.e., observational) were included. Articles were excluded if they reported autonomy outside the healthcare domain (e.g., autonomy in the education sector). Although we included research-based articles, we excluded randomized controlled trials because we were focused on autonomy within the context of healthcare utilization and AYA's interaction with providers while seeking care vs. the AYA's autonomy when participating in research not involving utilizing or interacting with a provider.

2.3 Data abstraction and analysis

A three-phase data extraction process was performed. Two reviewers independently screened the title and abstract, full-text, and then extracted data points into a matrix (25). Data extracted included, but was not limited to, study design, study demographic characteristics, study setting (i.e., hospital, school-based settings), health condition (i.e., cancer), the conceptualization of autonomy (i.e., how autonomy was defined), tools used to measure autonomy, and study findings. We also collected data on the barriers/facilitators associated with AYA's autonomous care. Next, the data were synthesized, narratively coded, and thematically analyzed to identify patterns, salient information, and themes related to AYA's autonomous care. Discrepancies were resolved through discussion and a third reviewer until an agreement and consensus were reached.

3 Results

3.1 Study characteristics

We included 31 studies in the final review and most studies (n = 24; 77%) included only adolescents and young adults (AYAs) (26–48). Other studies included adolescent-caregiver dyads or healthcare providers (49–56). AYA participants represented various subpopulations, such as those living with chronic conditions (e.g., cancer, type 1 diabetes mellitus, cystic fibrosis, or inflammatory bowel disease; n = 13; 42%) (30, 32, 33, 35, 40, 41, 44, 47, 49, 51, 52, 57), young women who have been commercially sexually exploited (n = 3; 9%) (26, 28, 39), a parous adolescent (n = 2; 3%) (36), and an adolescent in the juvenile justice system (n = 1; 3%) (37). Other study populations were broader in scope, including young women (n = 5; 16%) (29, 31, 40, 42, 53), undergraduate students (n = 2; 6%) (33), or adolescents and young adults in general (n = 5; 16%) (43, 48, 50, 54, 56). More than half (n = 16; 52%) of the studies focused on adolescent autonomy in specialized care (e.g., oncology, endocrinology, gastroenterology, behavioral health, and plastic surgery) (30, 32, 33, 35, 38–41, 43, 44, 47, 49, 51, 52, 56, 57). One-third of the studies focused on sexual and reproductive healthcare (n = 8; 25%) (29, 31, 36, 37, 42, 46, 50, 53), while the remaining focused on general healthcare (n = 6; 19%) (26, 28, 34, 45, 48, 54). Only one of the studies involved intervention research testing tools developed for AYA (49). Table 1 provides details regarding study characteristics.

3.2 Definitions and measures of autonomy

Most studies defined adolescent autonomy as a primary influence in healthcare decision-making (n = 24; 77%) (30–34, 36, 38–41, 44–57). Some conceptual definitions were more specific, focusing on reproductive decision-making and control (n = 5; 16%) (31, 36, 42, 46, 53) or independent functioning regarding medication management (n = 3; 9%) (30, 32, 52), privacy in telehealth care (43). Studies used various tools to assess adolescent autonomy. Majority of the included studies used author-created or modified tools to assess adolescent autonomy (n = 20; 65%) (26, 30, 31, 35–39, 41–43, 45, 47–50, 52, 54, 55, 57), only five studies (16%) relied on previously validated scale (32, 33, 44, 52, 53) but only a few reported tool validity (n = 8; 26%) (36–38, 44, 52, 53). The remaining studies (n = 7; 22%) did not directly measure adolescent autonomy (26, 28, 29, 34, 40, 51, 56). Table 2 shows a summary of the tools used to measure adolescent autonomy.

3.3 Preferences for autonomy

AYAs showed a spectrum of preferred levels of involvement in healthcare decision-making, ranging from complete deference to complete autonomy. However, they overwhelmingly preferred (n = 15; 48%) active involvement characterized by shared decision-making with input from their healthcare providers and caregivers (29, 33, 36, 38–42, 44, 47, 51, 53, 54, 56, 58). In addition, AYAs' desire for autonomy appeared dynamic, shifting in different situational and social contexts. For example, young women who were commercially sexually exploited exhibited an amplified desire for autonomy in healthcare decision-making (26, 28). A study of AYA oncology patients showed a preference for more passive roles in their care compared to non-oncology patients (33). Notably, survivors' preferences for autonomy shifted to more actively involved roles as time passed since diagnosis. A different study focused on AYA oncology patients reported no significant difference in preferences for autonomy between those undergoing treatment for a new diagnosis and those undergoing treatment for a relapsed cancer (38). Age of patients also appeared to play a substantial role in preferences for autonomy, with younger children more likely to defer decisions or responsibilities to caregivers or healthcare providers compared to older adolescents and young adults (30, 32, 35, 56, 57).

3.4 Barriers and facilitators of autonomous care

3.4.1 Barriers

The barriers for autonomous care are classified into individual, interpersonal and institutional and policy levels.

3.4.1.1 Individual factors

At the individual level, being younger was the most common barrier reported. Several studies reported that younger AYAs were less likely to engage in health-related decision-making, be involved in their diet and self-management for diabetes, and inflammatory bowel disease (IBD) (32, 35, 39, 53, 54). Similarly, Corona et al., 2022 assessed fertility preservation-related decision-making among AYAs with cancer and found that they often did not perceive fertility as an important concern; consequently, they did not engage in any decision related to it (39). Lack of knowledge and experience in health care was another commonly cited barrier (41, 44, 45, 55). These studies mention that AYAs often have inadequate knowledge and understanding of their health conditions, hindering their care involvement. Pyke-Grim et al., 2022 reported that many AYAs have relatively less understanding of their diagnosis and experience in the health care system, in the early phase of treatments, and rely more on their parents and providers (41). Several psychological factors, such as anxiety and fear related to their diagnosis, also prevented their involvement in care. For example, Corona et al., 2022 reported that youth involved in their study often had limited participation due to fear and anxiety related to their health outcomes (39). Negative experience also played a role in shaping their involvement (26, 52). For example, Godoy et al. 2020 reported that previous experiences from exploitation, unstable family backgrounds, and involvement in the system of care hindered young women in their study from having control over their bodies, and by extension, their health care decisions (26).

3.4.1.2 Interpersonal factors

Factors related to their relationship with parents, caregivers, and providers are included at the inter-personal or family level. Limited communication and shared decision making with parents and providers were common factors identified by the included studies (30, 45, 47, 52). For example, Brinkman et al., 2012 reported that limited involvement in decision-making and discussion between AYA, parents and providers led neglect of ADHD treatment (30).

Conflicting relationships with parents was another important factor influencing autonomous care (40, 47, 48, 52, 54). While conflicting relationships with parents, especially mothers hindered autonomous decision-making for contraception (36), many parents did not support the idea of self-consent for medical procedures such as vaccinating against COVID-19, thereby limiting their abilities to make independent health decisions (54).

Some studies found the AYA often trusted their family members and friends more than their providers, as a result they relied on their support network to make their medical decisions instead of being directly involved with their health care providers for making decisions. For example, Roque et al. 2022 reported that AYA relied on their mothers, sisters or other family members contraceptive-related decisions instead of their providers (36).

Peer influences from school-based social dynamics also emerged as another factor influencing AYA (48, 54). Both the studies reported that AYA included in their studies were influenced by their peers for vaccine related decision making, and positive social norms for vaccination increased likelihood of vaccine uptake.

3.4.1.3 Community and institutional factors

Community and institutional level factors include larger systems and structures that shape their autonomy in health care. Institutional structure was one of the notable factors reported by the studies included (26, 37, 43, 45, 48). One of the studies mentioned that incarceration increased stigma for contraceptive care, limiting AYAs' autonomy for family planning, however it also instilled a sense of self-reliance by allowing them to make decisions independent of the influence of their family and friends (37). Location of care and the type of technologies used also played a role in shaping their experiences. Rea et al., 2023 explored privacy concerns related to telehealth care and reported, that parents often did not consider AYA as an autonomous individual requiring confidentiality while meeting their providers. AYA had mixed reactions, while some found the presence of a parent during tele visits reassuring, majority reported feeling more emotionally secure and open to discussing sensitive issues when they had alone time (43). Additionally, technology such as video calls also raised the issues of privacy (43).

Judgmental and dismissal attitude from providers also played an important role (42, 46). For example, Rao et al., 2023 found that AYA judgmental attitude for contraceptive related decisions, dismissing symptoms after contraceptive use and feeling pressured to use contraceptives compromised their sense of agency (42).

Ethical and legal considerations also emerged as potential barriers to autonomous care. Moskop and Derse, 2024 presented a case study involving an ethical dilemma in which a minor with minimal social support and limited capacity to self-manage diabetes was initially not released from care due to the risk of life-threatening complications (40). Although the minor in this case study was ultimately released, the ethical tensions for releasing minors in similar high-risk cases persist. Another study by Delgado et al., 2023 also reported that parents and healthcare providers hold mixed opinions about lowering the legal age of self-consenting for vaccination (54).

Lastly stigma and social norms was also a critical factor for AYA, studies assessing autonomy in sensitive issues such as HIV prevention (45), STI prevention (46) or HPV vaccine uptake (48) reported that stigma and social norms often constrained their ability to make informed and autonomous decisions.

3.4.2 Facilitators

3.4.2.1 Individual factors

Among the individual level facilitators, older age was mentioned by several studies (35, 44, 45, 56, 57). Older AYA demonstrated greater developmental maturity and communication skills which facilitated shared decision-making. For example, Squitieri et al., 2013 reported older age increases adolescents' ability to communicate independently with their providers while also increasing their medical decision-making agency (57). Knowledge and understanding of the disease and the treatment procedure also increased their autonomy in receiving care (39, 55). While internet increased their access to medical information (55), comprehensive understanding allowed for informed decision making (39).

Major life events (e.g., childbirth, commercial sexual exploitation, incarceration, etc.) appeared to relate to a sense of autonomy among AYAs (28, 36, 37). For example, parous adolescents exhibited an enhanced sense of reproductive autonomy after giving birth, relying more upon themselves to make decisions regarding contraception (36).

Self-reliance was another factor identified by the studies included (26, 35, 36, 41, 42). These studies reported that adolescents with higher self-reliance had greater autonomy in their care. Self-reliance increased progressively with age and duration of treatment. For example, Pyke-Grim et al., 2022 found that among the survivors of pediatric cancer, over the course of the treatment, adolescents developed skills for self-advocacy which allowed them to manage their treatment schedule, request for accommodations for family members or specific providers and were able to make collaborative decisions for their care (41).

3.4.2.2 Interpersonal factors

Trust in family members and health care providers was the vital factor facilitating autonomous care for AYA (35, 44, 47). The study by Plevinsky et al., 2015 found that, building trusted relationship with providers increased independence and autonomy (35). Another study by Sutherland-Foggio et al., 2024 examined autonomous care among adolescents with advanced care and reported trust in family and health care providers allowed collaborative decision-making and increase in autonomy (44).

Patient centered care and shared decision-making between AYA, parents and providers was the most frequently cited facilitators by the studies included (29, 33, 35, 36, 38, 39, 41–43, 45, 49, 51, 52, 55, 57). These studies emphasized that institutional practices supporting patient centered care fostered a collaborative environment where AYA could better process health-related information, understand the roles of different providers, navigate the complex health care system and manage transitions between different types of care. This helped with increased self-efficacy and informed decision making. For example, Weaver et al., 2015 found reciprocal relations with clinicians allowed both patients and providers to understand the social and situational context, leading to shared decision-making (38). Corona et al., 2022 also reported that AYA valued access to various medical experts and comprehensive explanations of their treatment options, which facilitated understanding and supported informed choices (39). For tele-health care services, while certain technologies compromised their privacy, other types of technologies such as headphones, chat features facilitated establishing close connection with providers allowing for more autonomy (55).

4 Discussion

This study aimed to map the evidence on AYAs' healthcare autonomy in the US. AYAs included in this study had several health conditions, including cancer, chronic conditions, sexual and reproductive health issues, mental health, and other specialty services. Among the literature that provided a conceptual definition of autonomy, most referred to the construct of decision-making, while a few referred to adolescents' control, preferences, and choices. Our findings identify the need to consider adolescents' ability to be engaged in planning and decision-making for their healthcare.

Data analysis revealed several definitions and measures of adolescent autonomy, with most focusing on decision-making, while other concepts, such as confidentiality, privacy, or ethical care issues, were consciously lacking. Considering that these concepts have significant implications on healthcare behaviors, outcomes, management, and adherence to treatment plans, particularly for AYAs, ensuring that researchers assess autonomy holistically while developing a clear, meaningful, and practical definition of autonomy can have a serious impact on quality and access to care for adolescents (24), while also meeting the Healthy People 2030 objectives (58). Furthermore, our analysis revealed that only a few articles used validated tools, such as the deciding about diabetes-related conflict (52), the reproductive autonomy scale, and the control preference scale (33) to measure adolescent autonomy. In other situations, authors complemented autonomy measures with other validated scales, such as a three-item CollaboRATE tool to measure shared decision making (33) and the Family Roles Questionnaire (44). Furthermore, autonomy was contextualized based on the intensity of a situation for the adolescent or in context to the adolescent's health (26, 28). Thus, tools used to operationalize autonomy should be streamlined to enhance the validity and reliability of constructs to prevent biased measurement and estimates and ensure that patients are adequately represented (59).

In line with previous research, our study found that adolescents prefer to be actively involved in their care alongside their providers and caregivers (60). Although it is expected that AYAs generally prefer to be included in their care, most studies reporting AYA preferences focus on cancer patients, suggesting a gap in the knowledge regarding factors influencing the preferences of AYAs with other health conditions. Nonetheless, age plays a critical role in AYAs' choices and involvement in their care, with younger AYAs' decision-making being deflected to their caregivers. Previous research suggests cognitive development influences AYAs' ability to manage their health (61). While this perspective holds, we advocate for patient-and family-centered care that actively includes the voices of younger AYAs in their care. Effective patient- and family-centered care ensures that young persons are included in every aspect of their care with support from parents/guardians, emphasizing effective and respectful communication (62).

Moreover, designing health systems and public health interventions with and for young people is a hallmark of collaborative care. Thus, policies, health systems, and health communication materials and processes must be AYA-friendly to ensure AYAs understand fundamental knowledge regarding their care (22, 24, 63).

Using an ecological framework, we found that AYAs' sense of autonomy depends on many interrelated limiting and protective factors within the individual, interpersonal, community/institutional, and policy levels. For example, a patient's age, agency, type of disease, disease diagnosis stage or severity, adverse life events (e.g., incarcerations, etc.), family and friend support, sociocultural norms, ethical and legal issues, and broad policy factors substantially facilitated or impeded AYAs' ability to engage in autonomous care. Thus, our findings highlight the importance of understanding the nuances impacting autonomous care and for interventions to adopt a socioecological or system approach, identifying key areas to leverage to meet the specific needs of the AYAs.

4.1 Implications for practice and policy

The findings of this study have serious implications for young people's health care access and outcomes. Firstly, health systems need to be aligned with and center the unique needs of young people in the care delivery process. Developing tools, such as the Confident and Total Teen (64), that enhance young people's agency, confidence, and autonomy significantly impacts adolescent health. Ensuring that health professionals are adequately trained to communicate with AYAs effectively can enhance a sense of agency. Healthcare organizations can play a role by designing policies that allow for the sharing of confidential time between providers and adolescent patients, allowing them the space to reflect on healthcare options and opportunities. Furthermore, future research aimed at understanding adolescents' needs as they relate to their care may offer a starting point for ensuring patient autonomy, leading to better health outcomes and stronger relationships with their providers.

Although a few validated tools and instruments operationalize autonomous care, this study demonstrates a need for streamlined tools that incorporate other aspects of autonomy, such as confidentiality or privacy, or other adjacent factors, such as communicating with providers, navigating the healthcare system, and the ability to manage their health independently, that can affect autonomous care. Health researchers, policy experts, and relevant partners should work towards developing valid and reliable tools to evaluate the different aspects of autonomous care better. Moreover, these tools can be used to understand the AYAs' readiness for healthcare autonomy, and providers can move from assessment to intervening and positively influencing adolescent healthcare autonomy and agency.

Considering that engaging in autonomous care is affected by interrelated factors within the ecological framework, researchers, healthcare professionals, community organizations, and family members must work collaboratively to support AYAs in their healthcare delivery. Thus, it is crucial to understand adolescent autonomy and its influence on young people's access to quality healthcare. Organizational policies and AYA-friendly legislation in healthcare environments that assist AYAs in recognizing, developing, and using their autonomy skills to be the navigators of their healthcare. In addition, family-based healthcare protocols and interventions may help reduce tension between caregivers, providers, and adolescents. Research on family-based interventions has been shown to increase shared making, improve the quality of the patient-provider relationship, improve adherence to treatment and therapy, and achieve better outcomes overall (65, 66). Since legislative and health system factors greatly influence autonomous care. Our study questions the stringent policies and systems that divorce the sociopolitical context that can impede or facilitate AYAs' autonomous care. Therefore, AYAs' autonomy requires that they are addressed holistically through a systems-level lens (24).

4.2 Limitations

Our study substantially contributes to the literature to advance young people's health care access and outcomes. However, several limitations must be acknowledged. First, we only included articles published in the English Language, which reflects the practices in the US, and may not be generalizable outside of the US. However, the result may still apply to other regions, given that the need for autonomy is universal across all subpopulations and a human right issue. Second, despite our best efforts, it is likely that we may not have represented the broad scope of scientific literature on AYAs' autonomy. However, we systematically screened the articles and conducted an updated literature search to ensure we included a substantial percentage of AYAs, which is likely not to impact the inferences drawn. Despite this limitation, our study expands the body of knowledge on AYAs' autonomous care and brings to the fore the need for future research in this area.

5 Conclusions

The focus of this study was to understand AYAs' autonomous care and decision-making in the healthcare setting in the US. Much literature is centered on decision-making, focusing on knowledge at the expense of other salient factors, such as confidentiality, privacy, or ethical care issues. AYAs’ preferences, barriers, and facilitators of autonomous care are influenced by multiple factors that suggest that improving autonomous care requires a holistic approach that recognizes the complexities AYAs encounter in seeking and utilizing healthcare.

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