Who Needs to Know? Confidentiality in Adolescent Sexual Health Care

Research Facts and Findings, November 2018

A publication of Act for Youth

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by Karen Schantz

About the Author

Karen Schantz is an extension support specialist in Cornell University's Bronfenbrenner Center for Translational Research, and communications coordinator for Act for Youth.


"This information is between us. Anything you tell me is confidential, which means that we will not inform your parents or anyone else without your consent. I would only tell someone else if I thought you had been abused or hurt, or if I believed you were at serious risk of harming yourself or someone else. If that were the case and I needed to talk to someone else, I would first talk to you and we would make a plan together."

Adolescents seeking sexual and reproductive health care are likely to hear a version of this speech -- but does it fully address their privacy concerns? What does confidential care mean in practice, and can it be improved to meet young people's needs? In view of rising rates of sexually transmitted disease (STD) among young people, ACT for Youth reviewed recent research to update our understanding of the importance and practice of confidentiality for adolescents seeking sexual and reproductive health care.

Note: Consent to Care vs. Confidentiality

Consent in the medical context refers to the provider’s obligation to obtain informed consent before providing health services. While parents often consent to (i.e., authorize) services provided to their children, many states allow minors to consent to their own care when it comes to certain sensitive services such as sexual and mental health care.

Confidentiality refers to the protection of information exchanged between the health care provider and patient.

Depending on the state in which they live, adolescents are able to consent to certain sexual health care services on their own behalf, but this does not in itself guarantee confidentiality. For example, while a minor may consent to STD treatment, in some states the health care provider is permitted to notify the parents.

How do adolescents view confidentiality in the health care setting?

Concern about confidentiality is the most important barrier to care for adolescents (Bender & Fulbright, 2013). In surveys and focus groups asking young people about their views of health care, confidentiality turns up again and again as a key indicator, especially in sexual health settings (Ambresin et al., 2013; Daley, Polifroni, & Sadler, 2017).

Who is going to know my business?

While many researchers and physicians conceive of confidentiality as consultation without a parent present, adolescents' privacy concerns are much broader and more nuanced. For teens, newly dealing with sexuality and highly sensitive to the stigmas associated with sex, the craving for privacy extends every step of the way from the clinic location to follow-up communications about test results (Bender & Fulbright, 2013).

Walking into a facility that provides sexual health care, young people often assess each person they see: "We're so close to my school -- will anyone I know see me go in here? Isn't that receptionist a friend of my mother's? Is that stranger in the waiting room judging me because of my age? Does everyone know why I'm here? Who is going to find out that information, and what will they think of me?" The entire experience may be fraught with fear of being judged, labeled, embarrassed, or exposed:

While much of this anxiety is driven by the fear of parents finding out about a teen's search for birth control or STD care, clearly parents are not the only people teens want out of their business. In fact, in a general health care setting younger adolescents may be less concerned about parents, whom they may see as protective and calming, than about having their bodies seen and touched by clinicians and having their personal information shared with other providers (Britto et al., 2010).

Why do confidentiality fears matter?

Accommodating young people's confidentiality concerns is no small task. Parents understandably want to know about and influence the life decisions their adolescent children are making, and the push-pull of supporting adolescent "children" while allowing them to grow in independence is notoriously challenging. Likewise, for health care providers, changing routines and systems is a complex undertaking. Even ensuring that everyone in the medical setting understands the difference between consent to care and confidentiality can be difficult (Wadman et al., 2014). However, the cost of ignoring adolescents' anxiety over confidentiality is high.

Confidentiality fears lead to missed or delayed health care

Too often, teens who are concerned about confidentiality delay getting the health care they need -- or avoid it all together (Baldridge & Symes, 2018; Bender & Fulbright, 2013; Copen, Dittus, & Leichliter, 2016; Fuentes et al., 2018; Leichliter, Copen, & Dittus, 2017).

One large, nationally representative study found that nearly one in five teens age 15-17 said they would not seek sexual health care because their parents might find out (Fuentes et al., 2018). Those who were privately insured were especially likely to express this level of concern about confidentiality. Youth in this age group who do not live with a parent are even more at risk; over one in four of these adolescents would avoid getting care because of the fear that parents could find out. Similarly, nearly one in four sexually experienced teens this age -- arguably those with the greatest need -- would not seek care due to confidentiality concerns (Leichliter, Copen, & Dittus, 2017).

Despite runaway rates of STDs, many sexually active young people age 15-25 have not been tested (Cuffe et al., 2016). While confidentiality concerns don't entirely explain this lack of testing, they are a contributing factor. For example, sexually experienced adolescent and young adult women are less likely to be screened for chlamydia if they have concerns about confidentiality than their counterparts without such concerns (Leichliter, Copen, & Dittus, 2017).

Widespread restrictions on confidential abortion services (see below) have negative consequences for young women's health. In reaffirming their position favoring confidentiality for adolescents considering abortion, the American Academy of Pediatrics (AAP, 2017) called mandatory parental notification laws "damaging," noting that they cause delays that push abortions weeks later into the pregnancy. Adolescents are typically slower than others facing an unintended pregnancy to 1) recognize that they are pregnant and 2) seek abortion services (AAP, 2017). While abortion in the first trimester is a very safe, same-day procedure, later abortions can be more risky and are certainly more expensive (AAP, 2017). There is also evidence that teens' inability to obtain confidential abortion services (due to the distance they would have to travel to reach a state that does not have mandatory parent notification laws) was responsible for a nearly 3% increase in births to teens from 1993-2014 (Myers & Ladd, 2017).

Confidentiality fears may lead young people to lie or suppress information

When adolescents do get health care, they may lie when asked sensitive questions in front of a parent (Daley, Polifroni, & Sadler, 2017; Fuzzell et al., 2016). Clinicians who do not know the truth about risk behaviors cannot provide the care their patients need.

Adolescent fears may be well founded

Adolescents may have more to fear from confidentiality breaches than an awkward conversation with their parents. For some adolescents, fears of exposure are founded in the realities of their lives: parents and guardians who threaten violence or abandonment if a teen has sex, becomes pregnant, or is outed as LGBTQ; peers who bully, label, ostracize, or are violent toward young people who appear to be queer or otherwise violate the dominant culture. Similarly, some youth fear exposure to partners. A young woman may seek birth control, for example, knowing that her partner wants her to become pregnant and might become abusive if he knew of her plans to prevent pregnancy.

These fears may not be disclosed to the clinician. Rather, health care providers must trust that their patients are "the experts in their own lives" and respectfully support the desire for confidentiality as legitimate.

Pregnant minors may also need prenatal care. A Child Trends study (2018) found that over one in four girls younger than fifteen who gave birth in 2016 received late prenatal care -- or no prenatal care at all. Young age is associated with inadequate prenatal care, which in turn is strongly correlated with premature birth (Debiec et al., 2010).

Confidentiality in Practice

There is widespread consensus that teens should not be left to make these decisions entirely on their own. The principle of confidentiality is frequently paired with the recommendation that the clinician encourage each adolescent seeking care to talk to a parent, guardian, or—if the young person feels this is impossible—another trusted adult. In some cases, the health care provider may become that trusted adult, if they have developed a relationship over time or are comfortable and skilled in working with adolescents.

Health care professions have long acknowledged the importance of confidentiality for adolescents. While recognizing that adolescents should always be encouraged to involve a parent or another trusted adult in their health care decisions, many medical associations consider the provision of confidential service an evidence-based best practice, and it is regularly included in service assessments (Mazur, Brindis, & Decker, 2018). Clinicians and researchers have pointed out that while it is essential to the present needs of young patients, confidentiality may also serve as part of a client-centered approach through which the practitioner builds a trusting relationship that can motivate regular use of the health care system throughout life (Gavin et al., 2014; Middleman & Olson, 2018). By offering and explaining confidential services repeatedly, clinicians make it more likely that adolescents will seek health care, talk about sensitive issues, and return for follow-up visits (Marcell, Burstein, & AAP Committee on Adolescence, 2017).

Likewise, relevant government agencies have acknowledged the critical nature of confidentiality. For example, the provision of confidential services has historically been a pillar of Title X federal family planning funding (Beeson et al., 2016). Confidentiality has also been identified by the CDC and the Office of Population Affairs as a "key step" for providing quality family planning services, especially for adolescents (Gavin et al., 2014).

However, from office policies that don't prioritize privacy, to laws that promote parental rights at the expense of minor children's health, to flawed medical records and billing systems, the health care experience is rife with potential confidentiality breaches.

Teens want answers -- but may not have time alone with provider

Many young people today do want and often expect to have conversations about sexual health with health care providers (Córdova et al., 2018; Fuzzell et al., 2016). In some parts of the country this includes LGBTQ youth, who are ready to discuss sexual orientation and have questions about sexual health (see, for example, focus groups conducted in northern New Jersey; Snyder, Burack, & Petrova, 2017). However, adolescents want time alone with the clinician for these conversations, and too often this is not the case:

Legal Limits of Confidentiality

Health care providers cannot make unlimited promises of confidentiality. They must report the abuse of a minor, for example, which in some states could include consensual sex between an adult and a minor, depending on the age of the minor, the age difference between the adult and the minor, and whether the adult is in a caretaking role. Providers may also involve parents or others if they believe there is a risk of serious harm to the young patient or to another person, such as threats of suicide or homicide. State laws vary widely in their confidentiality protections and exceptions. Providers must be familiar with informed consent and confidentiality laws in their states as well as requirements that may be imposed by funders (Middleman & Olson, 2018).

Threats to Confidentiality

Middleman & Olson (2018) distinguish between the known exceptions to confidentiality, such as the legal limitations described above, and unintentional threats to confidentiality. An adolescent's private information may be inadvertently disclosed to parents and others through system failures:

Medical Records. Providers must document medical visits, and some records may include confidential information without identifying it as such. Electronic records and digital reminders also pose threats to patient privacy:

Explanation of Benefits. Young people who use their parents' private insurance may find that the confidential services they have received are detailed in the explanation of benefits sent to parents. In contrast to private insurance, coverage through Medicaid and the Title X (federal) Family Planning Program is more likely to protect the confidentiality of adolescent patients.

Strategies to Improve Practice

Managing privacy issues, some of which may have to do with the physical office space and clinic flow, can be tricky. Young people want to be able to talk to clinicians about sexuality and their changing health care needs in private. They don't want to announce the reason for their visit in a waiting room or in front of staff who don't need to know (Garcia et al., 2014; Rubin et al., 2010). While these issues may not all be easily addressed, taking the time to examine clinic practices in light of teens' experience and privacy needs may reveal opportunities for change.

Changes in communication practices may be more actionable.

Better training may also improve practice. Given the complex mix of ethics, laws, and policies relating to confidentiality, health care providers and staff are often confused about how to handle confidentiality issues (Wadman et al., 2014). Training is necessary for every staff member who comes into contact with the patient, from the front desk personnel to the clinician, as well as billing staff, and should be ongoing, not a one-time event (AWHONN, 2017; Williams & Taylor, 2016).

Careful attention to documentation, digital systems, and sharing of electronic records is necessary to protect confidentiality. The technological health care environment is still new and ever-changing, and the potential for breaching confidentiality in this environment is not always well understood. Providers must also be aware of complex and competing laws that regulate information sharing.

Final Thoughts

Confidentiality protections exist to encourage healthy decision-making. Without these protections, many adolescents will avoid or defer caring for their sexual health, and some will lie to their providers, despite the risk that they may face unwanted consequences as a result.

Respect for privacy is the root of a trusting relationship between health care provider and patient. Health care providers may be privy to intimate and even secret details of their patients' lives. But for patients to open up about aspects of their lives that could potentially affect their health, they must be confident that those details will not be shared unnecessarily.

When adolescents are treated as independent, respected decision-makers, and at the same time receive the information and counseling needed to make health decisions, they are afforded the developmental support and room they need to grow into healthy adulthood. Confidentiality protections are central to this process.

Professional Associations Endorsing Confidential Care for Adolescents