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PRINCIPLES OF ADOLESCENT- AND YOUNG-ADULT-FRIENDLY CARE: CONTRIBUTIONS TO REDUCING HEALTH DISPARITIES AND INCREASING HEALTH EQUITY
ANGELA DIAZ, MD, PHD, MPH, AND KEN PEAKE, DSW
Adolescents (ages 10 to 19) and young adults (ages 20 to 24) make up approximately 21 percent of the population of the United States (U.S. Census Bureau, 2016). Adolescents are widely considered to be a population at the crossroads of lifelong good or poor health because adolescence is a time characterized by experimentation fueled by the drive for independence. Experimentation for many adolescents includes behaviors that may involve risk exposure that can impact long-term health and well-being. But, young adulthood, though relatively overlooked, is an equally critical developmental period, in which young people are expected to take on new responsibilities and to begin to establish themselves in the world (IOM and NRC, 2014). Behavioral patterns, lifestyles, and health-service-utilization patterns evolve during this stage of life to mold health over the life course.
Health care providers can play a unique role in providing appropriate interventions that encourage young people to become good health care consumers and adopt healthy behaviors. These interventions can be reinforced by educators, advocates, and families to empower young people to thrive physically and emotionally. Yet, despite young people’s deep potential to contribute to our society if they are given the opportunity for a healthy present and future, their unique needs are not adequately addressed by either pediatric or adult-focused health care models. For both adolescents and young adults, lack of health care and health risk behaviors can result in health disparities further down the road and increase the risk for developing chronic diseases later in life. Disturbingly, by young adulthood, we find a magnification of health disparities that interfere with a successful transition to adulthood (IOM and NRC, 2014).
We argue that providing health services that are adolescent and young-adult friendly (i.e., specifically designed to account for the characteristics of young people) can improve both their access to and utilization of health care. Therefore, this paper outlines the key principles that we propose should guide the design and delivery of adolescent and young-adult care.
HEALTH DISPARITIES IN THE ADOLESCENT AND YOUNG-ADULT POPULATIONS
While the causes of health disparities are highly complex and still too poorly understood, certain social factors are known to be associated with these disparities in the adolescent and young-adult populations. For instance, poverty has long been associated with health disparities among young people. Adolescents who are poor report worse health outcomes, including higher rates of sexually transmitted infections and pregnancy, than higher-socioeconomic-status (SES) adolescents (Gold et al., 2002). They also have higher rates of depression and suicide and are more likely to be sexually abused or victims of homicide (Fiscella and Williams, 2004). Obesity is also higher among low-SES adolescents than those who are better off (Miech et al., 2006).
Young adults, who are often thought to be a naturally robust population when compared to older people, face declining health and challenges related to mental health, wellness, and obesity. These factors, among others, are inherently linked to their long-term health (IOM and NRC, 2014). Similar to adolescents, low-SES young adults have poorer health outcomes than those who are better off (Hudson et al., 2013; Mulye et al., 2009).
Geography
Where adolescents and young adults live also has an impact on health disparities; young people who live in rural areas are more likely to be poor and less educated than those who live in or near urban and suburban environments, and both factors are associated with a range of poorer health outcomes (HHS, 2016; USDA, 2015). Young people from rural areas commonly have less access to primary health care and mental health care (Rural Health Association, 2016).
Race/Ethnicity
Adolescents and young adults of color face health disparities associated with their race and ethnicity (IOM and NRC, 2014). Those who are African American, American Indian or Alaska Native, or Latino experience worse outcomes in a variety of areas compared to adolescents who are white (Elster et al., 2003; Hudson et
al., 2013; Neumark-Sztainer et al., 2002; Singh et al., 2008; Vo and Park, 2008). When compared to whites, African American and Latino fifth-graders have higher rates of exposure to violence, peer victimization, substance use, and terrorism worries; lower rates of seat-belt use, bike-helmet use, and vigorous exercise; and lower self-rated health status and psychological and physical quality of life (Schuster et al., 2012). These conditions mean that addressing racial and ethnic disparities will become even more pressing in the next decade if progress is to be made toward health equity. Also, the adolescent and young-adult populations are becoming more ethnically and racially diverse, with steady growth in the proportions of these age groups who are youth of color, particularly Latinos and Asian American youth.
Sexual Orientation
Among the youth population, lesbian, gay, bisexual, and transgender (LGBT) youth are particularly vulnerable to a range of health disparities. LGBT adolescents and young adults have significantly worse health outcomes than heterosexual youth, including higher rates of mental health problems, including chronic stress and depression, as well as suicide. These outcomes are significantly related to discrimination, harassment, and other forms of victimization, which takes place in families, schools, and communities (Burton et al., 2013; Saewyc, 2011).
HEALTH CARE ACCESS AND UTILIZATION
While we recognize that disparate health outcomes for young people involve complex interactions among multiple factors, a potentially protective factor that can change the health trajectory for young people is access to age-appropriate health care and utilization of services. Young people who experience multiple risk factors, already mentioned, may also lack health-insurance coverage and age-appropriate services. As a result, the current health care delivery system is not meeting the challenges young people face today; this means there are many missed opportunities (IOM and NRC, 2009, 2014).
The Affordable Care Act and the Future
How health disparities among adolescents and young adults will be influenced in the long term by any of the various initiatives for health-insurance reform, including the Affordable Care Act (ACA) or its potential replacements, remains unclear. More than 40 percent of those affected by coverage expansion under the ACA were poor, young people of color (National Conference of State Legislatures, 2011). In 2010, the first year after the implementation of the ACA, and in 2011, spending on young-adult health grew faster than for other age groups, but it
appears that emergency-room use and psychiatric and substance-abuse hospitalizations may account for much of this growth in spending (Health Care Cost Institute, 2014). Access to primary care services for young adults has improved, but this age group is still the most likely to be uninsured (30 percent) compared to any other age group (Centers for Medicare & Medicaid Services, 2016).
Adolescents
Adolescents have long received less health care than all other age groups (Irwin et al., 2009; Newacheck et al., 2004), with the exception of young adults (IOM and NRC, 2014). But, although the ACA has significantly increased coverage for adolescents, there remain concerns about whether they will get all the care they need, even if it is to survive. Adolescents are known to forego care when they fear that their confidentiality and privacy might be compromised, and important remaining obstacles include a lack of awareness of eligible benefits under ACA, lack of youth confidentiality, and discomfort and stigma (Advocates for Youth, 2017). One problem is seen in the low rates of provision of long-acting reversible contraception (LARCs): “A lack of awareness of benefits, confidentiality concerns, and discomfort and stigma on the part of providers all play a role and contribute to low rates of use of LARCs in young people, even though this method is highly effective at preventing pregnancy and is cost effective over time” (Advocates for Youth, 2017).
Young Adults
The health of young adults has received inadequate attention, given that their health outcomes are even worse than those of adolescents. Indeed, despite the myth that young adults are healthy, young adulthood is a time when we see an alarming drop in a range of indicators of health and well-being (IOM and NRC, 2014). Even compared to adolescents, who have low rates of health care utilization compared to all other age groups, young adults have the lowest rates of health care utilization and significantly higher emergency-room use compared to both adolescents and adults (IOM and NRC, 2014). The ACA provided coverage for more than 3 million young adults who were added to health-insurance rolls in the first two years of implementation, which increased routine health care visits by this age group and greatly reduced levels of care foregone because of cost (Claxton et al., 2012). But, currently, with calls to dismantle the ACA and replace it, the future remains very unclear.
Unmet Needs
The marked disparities in health care use between adolescents and young adults and other age groups have been attributed to the idea that these age groups have
fewer needs. It is a myth that young people do not need services. In fact, they have significant unmet health needs (Ames, 2008). Among adolescents, 9 percent of all 10- to 17-year olds and 12 percent of poor 10- to 17-year olds have limitation of activity due to a chronic health condition (McManus and Fox, 2007). Even for adolescents and young adults who are generally in good health, access to health care, preventive care, and health education is necessary to ensure continued good health throughout their lives (National Conference of State Legislatures 2011).
Unaddressed mental health problems, while disturbingly high among adolescents, are of even greater concern in young adults. Only 20 percent of adolescents with serious mental health conditions get proper care, but by young adulthood, this rate is cut in half. Only 10 percent of young adults with serious mental health conditions get care (Fox et al., 2010b).
Disparities in Health Care Access
There are longstanding disparities in access to and use of health care among adolescents. For example, in a 2003 study conducted after Medicaid expansion and the creation of State Children’s Health Insurance Programs, low-SES adolescents remained at a significant disadvantage, with less access to care and less health care utilization when compared to middle-class adolescents (Irwin et al., 2009). Young adults, who historically have had lower rates of insurance than children and adolescents, have even less access and utilization. For many, and particularly among vulnerable groups such as youth of color and LGBT youth, the situation is more dire (IOM and NRC, 2014; National Conference of State Legislatures, 2011; Vo and Park, 2008).
Even with implementation of the ACA, the estimated share of youth ages 10–19 who are eligible but uninsured varies from 2.3 percent in Massachusetts to 17.8 percent in Texas (Office of Disease Prevention and Health Promotion, 2016). Since the ACA, many low-income older adolescents (particularly those ages 19 and 20) remain uninsured in 22 states where there are no subsidies provided to them or where Medicaid has not been expanded. This is particularly important as this group is unlikely to have employer-based coverage or coverage under a parent’s private insurance plan (Fox et al., 2013b).
MEETING THE HEALTH CARE NEEDS OF ADOLESCENTS AND YOUNG ADULTS
Reducing health disparities that result from lack of care involves far more than ensuring that young people have insurance coverage or can find and reach services. Both adolescents and young adults have population-specific characteristics
and concerns that must be taken into account if they are to make use of services. Young people may forego care or avoid talking about vital issues with a health care provider if services are insensitive to their needs and providers are uncomfortable with or unprepared to address their issues (Lehrer et al., 2007).
Despite this, the current care-transformation activities under the ACA and Primary Care Medical Home (PCMH) initiatives, have not taken into account the unique needs of adolescents and young adults (Stille et al., 2010; Walker et al., 2011). The PCMH, which originated as a way to improve quality of care through a partnership between the patient or family and a highly coordinated and comprehensive network of providers (Sia et al., 2004), is defined by the Agency for Healthcare Research and Quality (AHRQ) as a model for the improvement of primary care nationally that emphasizes core functions such as: comprehensiveness (with care provided by a multidisciplinary team); patient-centered (with patients as fully informed partners in care planning, with understanding and respect of each patient’s unique needs, culture, values, and preferences); a high level of coordination; accessibility; and a commitment to quality and quality improvement (AHRQ, 2017). Because this transformation effort originated from a chronic-care model focused initially on the health care needs of the elderly and children with special needs in an effort to create cost savings for populations with high care utilization, the needs of adolescents and young adults have not been given adequate consideration (Fox et al., 2013a).
Therefore, it should not be a surprise that, while the American Academy of Pediatrics framework for the PCMH recommends that “developmentally appropriate and culturally competent health assessments and counseling” be used to “ensure successful transition to adult-oriented health care, work, and independence” (American Academy of Pediatrics, 2016), there are no specific recommendations with regard to adolescents and their concerns about privacy, confidentiality, and stigma. One of the aims of this paper is to describe the unique characteristics of young people that should be considered in designing their health services.
Giving due consideration to these unique concerns and issues when delivering health services for them is what we mean by the term “adolescent- and young-adult-friendly approach.” This approach is intended to ensure that services are easily accessible, meet the needs of young people (particularly the most vulnerable), and are designed in a way that makes them acceptable to young people (i.e., young people will use them comfortably and responsibly). Acceptability and appropriateness are known to influence the willingness of young people to use services (Resnick et al., 1980). To achieve this end, we argue that the multiple barriers to care must be met to ensure appropriate service design and delivery for this population. We highlight several of these barriers below.
Confidentiality
A major potential barrier to seeking care for adolescents is their concern about confidentiality and the fact that they will commonly avoid services if they feel their privacy is in danger of being violated (Lehrer et al., 2007). While many states have confidentiality laws on the books with regard to adolescents, providers are generally uninformed about the rights of adolescents to confidential services (Huppert and Adams Hillard, 2003; Reddy et al., 2002). In our experience, young adults, despite not being minors, have similar concerns to adolescents about privacy and frequently do not want a parent to know about their health care visit. While ACA’s extension of insurance coverage under a parent’s plan until age 26 years has led to increased insurance coverage for young adults, the explanation of benefits (EOB) that private insurance companies send to the policyholder creates a problem that may deter many from seeking care for privacy-sensitive services.
Service Provider Relationship
Adolescents are more likely to place importance on the personal characteristics of their medical provider than are adults, and they report that health care providers do not spend enough time to get to know them and focus on their problems rather than on their strengths (Fox et al., 2010b). The Positive Youth Development (PYD) framework (Larson, 2000; Pittman et al., 2000), embraced by the Mount Sinai Adolescent Health Center (MSAHC) (Diaz et al., 2005), is a widely accepted guide to the design of services for young people to ensure that they are acceptable and well utilized by young people. PYD offers a framework that takes into consideration the contribution of social and institutional factors (including protective factors) to adolescent resilience and vulnerability. PYD focuses on the fit between the opportunities for meaningful participation that are necessary for healthy development and the characteristics of the communities and institutions within which young people live. It starts with the maxim that for a young person to be “problem-free is not [to be] fully prepared” for the future (Pittman et al., 2000, p. 20), as problems and challenges are instrumental to developing an individual’s personal and social assets (Scales and Leffert, 1999). These assets include motivation to develop new skills; self-efficacy and sense of responsibility for self; critical thinking; emotional self-regulation; good relationships with peers, parents, or other adults; and a sense of having good health-risk-management skills. Key to development of these assets is the role of adults in finding ways to be able to allow adolescents gradual and increasing control over personal decision making while remaining available for guidance when it is sought (Eccles et al., 1993; Larson, 2000). For a description of PYD in health care delivery, see Diaz et al. (2005).
Unfortunately, most health-services providers may not know about the concerns that young people have when seeking care: young people report that they are infrequently asked to give any feedback regarding the health services they receive (Fox et al., 2013). Although much of the knowledge about issues in serving young people has come from studies conducted among adolescents and has been insufficiently studied in young adults, it is highly likely that the lessons learned from adolescents also largely apply—at least in broad strokes—to young adults. The experience gained in our health center, where we work with young people ages 10 through 24 years, suggests that young adults have many of the same concerns and experiences in seeking health care that they had as adolescents.
Even more disturbing than the fact that health-services providers who serve young people fail to get their feedback about how to best serve them is the fact that young people frequently report that their health providers fail to ask about sensitive issues, including sex and sexuality, substance abuse and other risky behaviors, as well as abuse and violence and other traumatic exposures, all of which are often at the core of adolescents’ and young adults’ experiences and concerns (Alexander et al., 2014; Klein and Wilson, 2002; Schoen et al., 1997).
Stigma
Both adolescents and young adults have concerns about being stigmatized or feeling shame and are extremely sensitive to the perceptions of others, including their peers (Woods and Neinstein, 2002). Therefore, the way that services are organized (whether under one roof or via a referral process) should be done in a way that is stigma free. For example, the way services are named can contribute to stigma: using terms such as “HIV services,” “sexual assault services,” “mental health services,” and “family planning services” creates a stigma barrier. Furthermore, the way services are scheduled can inadvertently contribute to stigma if it is evident to others in the waiting room which service a young person is getting. For example, if “HIV services” are all scheduled in one clinic session, with few other services being provided at that time, for a young person simply being in the waiting room may lead to a fear of being exposed as HIV positive. This can present major challenges to small practices, but sensitivity to the issues of privacy and stigma is still a necessary consideration if young people are to feel comfortable and welcome.
Provider Preparation and Training
Health care providers in general often do not feel sufficiently prepared for or adept at dealing with the issues of young people. Many are not well trained
to work with adolescents (Fox et al., 2010a), and a review of the literature suggests there has been insufficient attention given to the particular skills and knowledge that would prepare providers to work with young adults. Clinician-related barriers to adolescent care include provider insensitivity, lack of knowledge and skills regarding sexual and reproductive health, insufficient/inadequate communication, and discomfort with young people and their concerns and behaviors (Blum and Bearlinger, 1990; Blum et al., 1996), which can lead to young people feeling judged (Schuster et al., 1996). It is not clear that providers are any better prepared to address the health concerns and problems of young adults.
ADOLESCENT- AND YOUNG-ADULT-FRIENDLY SERVICES
Adolescent- and young-adult-friendly health services have at their foundation principles and heuristics for the design and delivery of care that have emerged from the field of adolescent and young-adult health over a four- or five-decade period. This approach evolved from the field of adolescent medicine in recognition of the unique developmental characteristics, concerns, vulnerabilities, and opportunities for health promotion of adolescents along with their relative inexperience in seeking or navigating health care independently. Because much of the work to date stems from work with adolescents and those transitioning to young adulthood, the full consideration of the needs and characteristic concerns of young adults is, in our view, a much-less-developed area, which presents an opportunity for us to learn much more. Despite this shortcoming, there is an emerging but still “loose” consensus about what should guide the design and delivery of health services for young people.
The Mount Sinai Adolescent Health Center: A Case Study
The Mount Sinai Adolescent Health Center (MSAHC), New York City, was given mention in the 2009 Institute of Medicine report Adolescent Health Services: Missing Opportunities (IOM and NRC, 2009) for its focus on a youth-development approach to health and as “noteworthy for its emphasis on youth empowerment through intentional engagement with adolescents and partners in understanding and ownership of their health” (p. 230). Furthermore, MSAHC’s social-justice framework and its service principles have recently been articulated through a study being conducted by a team of researchers at ICF International, funded by the New York State Health Foundation, for the development of a Blueprint for
Adolescent and Young Adult Health Services (Mount Sinai Adolescent Health Center, 2017). The ICF International Research Team, as part of a third-party evaluation, studied and iterated the principles for adolescent and young-adult service development and provision embedded in the MSAHC model and simultaneously conducted a review of the literature to identify additional service principles for adolescent service models and guidelines. Table 8-1 lists the principles that are foundational to the MSAHC approach and the support for these principles that can be found in the literature. For brevity, rather than reviewing all the principles, we will focus on a few key principles that MSAHC considers in ensuring that its services are equitable and also acceptable to its diverse population of young consumers.
TABLE 8–1 | Principles That Guide the Design and Delivery of Adolescent and Young-Adult Health Services and Sources in the Literature
| Equitable | All young people, not just selected groups, are able to obtain the health services and that services do not discriminate against any sector of youth on grounds of gender, ethnicity, religion, disability, social status, sexual orientation, or any other reason. (3, 4, 5, 15) |
| Reach out to the most vulnerable of those who lack services | Implement case-management services, including transportation assistance, to youth with HIV, mental health issues and other conditions that may be barriers to accessing care; focus on youth most vulnerable to risky behavior and poor health; remove barriers to care |
| Accessible and easily navigated | Geographically and financially accessible, easily identifiable, and easy to access for services both by appointment and walk-in (1, 2, 3, 4, 5,7, 8, 11, 14, 15, 17) |
| Comprehensive | Deliver an essential package of services, including preventive services, health promotion, risk-reduction counseling and education, and all-inclusive services (as many services as possible in one place) (3, 4, 7, 8, 9, 12, 17) |
| Integrated | Integration of primary and behavioral health care services; screen and refer for sexual and reproductive health issues, substance use, and mental health concerns (1, 9, 12, 17) |
| Confidential and obtaining informed consent from young people themselves | Separate waiting room for youth; adopt adolescent- and young-adult-sensitive authorization and review processes; guarantee confidentiality and adolescent minors’ rights to consent to sexual and reproductive health care; informational, social, psychological, and physical privacy, beyond traditional confidentiality (1, 2, 3, 4, 6, 7, 10, 12, 13, 16, 17, 18) |
| Developmentally tailored and appropriate | Age-appropriate approach and health education materials, adolescent- and young-adult-friendly providers (2, 5, 7, 8) |
| Relationship-based | Mentorship of youth by providers; importance of relationships with providers on youth development; providers who spend enough time with the youth (8, 21) |
| Supportive of one-on-one youth–provider interactions | Parents of adolescent minors should be asked to wait in the waiting room and be reassured that they will be invited back in to discuss any remaining issues; once provider is alone with the teen, establish ground rules for confidentiality (22) |
| Sensitive, trained, and reflective staff | Staff receive training and support regarding working with adolescents and young adults; services are effective because they are delivered by trained and motivated health care providers; care provided by adolescent specialists; adolescent health resources and mechanisms for providers, including subspecialty sources of care and reference materials; provider collaboration; efficient division of responsibility (care delivered by most appropriate providers); staff sensitivity (to young people); compensation for providers; build staff capacity to serve adolescent patients (3, 4, 7, 10, 13, 16) |
| Safe space and approach that is nonjudgmental and without stigma | Welcoming with visual teaching aids; youth-friendly environment that signals diversity and the competence of the service to listen to and help with any concern or question, no matter what (1, 2, 3, 10, 17, 19) |
| Respectful | Providers who take youth seriously, listen, do not scold them; providers support youth in making their own decisions; exams are done with maximum respect for youth’s dignity (1, 3) |
| Culturally competent | Culturally appropriate health education materials, celebrating diversity (1, 2, 5, 6, 7) |
| Promoting parent–child communication | Parental involvement encouraged in the care of adolescent minors but not required; elicit input and feedback from young people and their families; when serving teens, invite the parent back into room to discuss visit with youth and provider once confidentiality ground rules are agreed on without parent in exam room (1, 3, 7, 10, 22) |
| SOURCES | |
| NATIONAL AND INTERNATIONAL ORGANIZATIONS | |
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1. Advocates for Youth: Best Practices for Youth-Friendly Clinical Services* http://www.advocates-foryouth.org/publications/publications-a-z/1347--best-practices-for-youth-friendly-clinical-services Presented as best practices for youth-friendly clinics. |
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| 2. American College of Obstetricians and Gynecologists: The Initial Reproductive Health Visit http://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Adolescent-Health-Care/The-Initial-Reproductive-Health-Visit Presented as “youth-friendly” clinic characteristics. | |
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3 Engender Health: Youth-Friendly Services: A Manual for Service Providers https://www.engenderhealth.org/files/pubs/gender/yfs/yfs.pdf Presented as “youth-friendly” clinic characteristics. |
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4 Family Health International: Family Health International and the United Nations Population Fund Egypt. (2008). Training Manual for the Providers of Youth Friendly Services http://www.fhi360.org/resource/training-manual-providers-youth-friendly-services Presented as “youth-friendly” services. |
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5. Healthy Teen Network: “Is Your Clinic Youth Friendly? Why, What, How, and What’s Next” http://www.hhs.gov/ash/oah/oah-initiatives/teen_pregnancy/training/Assests/2014%20Conference/youthfriendlyclinic.pdf Recommends same principles as the World Health Organization (see below). |
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6. International Planned Parenthood Federation: Keys to Youth Friendly: Introducing the Series http://www.ippf.org/sites/default/files/keys_introduction.pdf Presented as “keys” to improving youth-friendly services. |
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| 7. National Adolescent Health Information Center at the University of California, San Francisco: http://nahic.ucsf.edu/downloads/Assuring_Hlth_Checklist.pdf National Adolescent Health Information Center. (1998). Assuring the Health of Adolescents in Managed Care. San Francisco, CA: University of California, San Francisco, National Adolescent Health Information Center. Presented as components of adolescent health care delivery and includes a substantial checklist for planning and evaluating adolescent health care services. | |
| 8. National Alliance to Advance Adolescent Health: Adolescents’ Experiences and Views on Health Care http://www.thenationalalliance.org/pdfs/Report2.%20Adolescents’%20Experiences%20and%20Views%20on%20Health%20Care.pdf Presented as adolescents’ views on how their health care should be delivered. | |
| 9. National Alliance to Advance Adolescent Health: http://gottransition.org/resourceGet.cfm?id=206 | |
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10. National Alliance to Advance Adolescent Health: Under One Roof: Primary Care Models That Work for Adolescents http://www.thenationalalliance.org/pdfs/Report1.%20Under%20One%20Roof%20-%20Primary%20Care%20Models.pdf Presented as an “approach” to an adolescent-centered health care program. *MSAHC was profiled, along with three other adolescent clinics, for this article. |
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11. National Council of Community Behavioral Care: Is Your Organization Trauma Informed? http://www.thenationalcouncil.org/wp-content/uploads/2012/11/Is-Your-Organization-Trauma-Informed.pdf Offers guidelines for organization self-assessment and adoption of trauma-informed care practices and strategies. |
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| 12. Institute of Medicine: National Research Council and Institute of Medicine. (2009). Adolescent Health Services: Missing Opportunities. Committee on Adolescent Health Services and Models of Care for Treatment, Prevention and Healthy Development, R. S. Lawrence, J. Appleton Gootman, and L.J. Sim, Editors. Board of Children, Youth and Families. Division of Behavioral and Social Sciences and Education. Washington, D.C.: The National Academies Press. Presented as goals and practices. | |
| 13. SAMHSA-HRSA Center for Integrated Health Solutions: Improving Health Through Trauma-Informed Care. July 28, 2015 Webinar. | |
| 14. Society for Adolescent Medicine: Morreale, M., Kapphahn, C., Elster, A., Juszczak, L., Klein, J. (2004). Access to healthcare for adolescents and young adults: Position paper of the Society for Adolescent Medicine. Journal of Adolescent Health 35:342–344. Presented as recommendations for improving care of adolescents. | |
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15. World Health Organization: Making health services adolescent friendly: Developing national quality standards for adolescent-friendly health services. http://apps.who.int/iris/bitstream/10665/75217/1/9789241503594_eng.pdf Presented as framework for adolescent-friendly health services. |
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| HEALTH DEPARTMENTS | |
| 16. New York City Department of Health and Mental Hygiene Young Men’s Health Initiative (no year): Best Practices in Sexual and Reproductive Health Care for Adolescents. For health care providers in primary care, family medicine, pediatrics, adolescent health, family planning and obstetrics and gynecology. Presented as “how-to” for making clinics youth friendly. | |
| 17. Labor, N., Kaplan, D., Graff, K. (2006). Healthy Teens Initiative: Seven Steps to Comprehensive Sexual and Reproductive Health Care for Adolescents in New York City. New York: New York City Department of Health and Mental Hygiene. Presented as best practices for meeting the health care needs of adolescents. | |
| JOURNAL ARTICLES | |
| 18. Britto M., Tivorsak T., Slap, G. (2010). Adolescents’ needs for health care privacy. Pediatrics 126(6):1469–1476. Discusses the array of confidentiality needs of adolescents and how they can be addressed in a clinic environment. |
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| 19. Dick B., Ferguson J., Chandra-Mouli V., Brabin L., et al. A review of the evidence for interventions to increase young people’s use of health services in developing countries. In Ross, D., Dick, B., J Ferguson (Eds.). Preventing HIV/AIDS in young people: A systematic review of the evidence from developing countries. Geneva, World Health Organization, 2006. Identified several characteristics of youth health services in programs that showed some evidence of effectiveness. |
| 20. Mandel, L., Qazilbash, J. (2005). Youth voices as change agents: Moving beyond the medical model in school-based health center practice. Journal of School Health 75(7):239–242. Examines the impact of youth involvement in a youth clinic. | |
| 21. Sale, E., Bellamy, N., Springer, J. F., & Wang, M. Q. (2008). Quality of provider-participant relationships and enhancement of adolescent social skills. Journal of Primary Prevention 29(3):263–278. Demonstrates the positive effect of relationship building with youth by health care and other social services providers. |
MSAHC’s framework utilizes PYD principles to strengthen young people’s access and use of high-quality health care specifically designed to address their health care needs, their concerns, and the unique sensitivities that they may have about seeking and using care (Diaz et al., 2005). MSAHC recognizes that, during adolescence, the responsibility to be healthy begins to shift from parents and caregivers to young people, making it critical to ensure that young people have access to health care, education, and the opportunity to develop the skills they need to be productive and make valuable societal contributions (McNeely and Blanchard, 2009). MSAHC’s mission is to “break down economic and social barriers to health care and wellness for young people by providing vital services—high-quality, comprehensive, confidential, and free—for all who come to us . . . [because] physical health and emotional well-being in adolescence is the foundation of a productive and fulfilling adult life [and] every teenager and young adult has the right to proactive, inclusive, and compassionate health care that demonstrably improves their chances of preventing disease and dysfunction . . . [an approach that helps them] become informed health consumers who take responsibility for their own well-being, benefiting them and society long term” (Mount Sinai Adolescent Health Center, 2016).
MSAHC provides free health services to more than 10,000 vulnerable young people ages 10 to 24 each year, of whom 98 percent are low income and 95 percent are of color. The service evolved to particularly attract and welcome young people who lack alternatives—for instance, those who are uninsured and poor—however, care is provided to any young person who seeks it and it is free. Their levels of education and household situations are extremely diverse; some are in foster care, homelessness, sex trafficking, or are refugees, while others have better life circumstances. Regardless, the MSAHC aims to provide a safe, welcoming, nonjudgmental environment in which young people can access high-quality health care.
The MSAHC model (Diaz et al., 2005; Mount Sinai Adolescent Health Center, 2017) is comprehensive, interdisciplinary, and highly integrated, with all services provided under one roof. At the core are primary health care, sexual and reproductive health care, dental care, optical care, and mental and behavioral health care. Primary medical care is delivered by specialists in adolescent medicine who
provide preventive medical services, health maintenance, acute care, management of chronic illnesses, and inpatient services. Each adolescent knows his or her own provider who serves as both primary care practitioner and case manager for all health care needs. Mental health care includes individual, group, and family psychotherapy; psychological testing; psychiatric services; diagnostic and psycho-pharmacological services; and specialized care for mentally ill, traumatized, and substance-abusing youth. MSAHC provides specialized services for rape, incest, sexual-abuse, and sexual-assault survivors; for youth with eating disorders; for HIV+ youth; for teen parents (and their children); for transgender youth; and for LGBTQ youth.
Principle: Equitable Care
If all young people could obtain health services that did not discriminate against any sector of youth on grounds of gender, race, ethnicity, religion, disability, social status, and sexual orientation but instead were proactively designed to embrace and celebrate these diverse groups, disparities resulting from lack of access to and under-use of care might be greatly reduced.
Principle: Safe Space
One purpose of the adolescent- and young-adult-friendly approach is to ensure that all young people have a “safe space” where they can air concerns and questions without stigma or adult judgment. Many young people have not yet developed health literacy and have no experience navigating the silos by which health care is organized (Brown et al., 2007; Gray et al., 2005; Manganello, 2009). Yet, developmentally young people must learn to seek and use care on their own. Furthermore, many do not wish to disclose their concerns to a parent or caregiver, especially in regard to deeply personal issues like sexual health, gender identity, or risky behaviors. For some, the drive to seek care is created by a health crisis such as a suspected pregnancy or a sexually transmitted infection. For others the impetus is to obtain contraceptive counseling and contraceptives, or for other types of guidance. Some may be sick or may need an annual physical for sports participation or working papers. But, often the reason for the visit may not be initially transparent.
For example, our research shows that many young people at MSAHC who are victims of sexual assault or abuse may feel that they are somehow culpable, fear being blamed by adults and others, or do not recognize that what they experienced was abuse (Surko et al., 2005). Thus, they may not spontaneously reveal a history of trauma or know they need help. Therefore, it is essential that our service and providers minimize the need for a young person to be fully informed
and health literate about their health conditions, concerns, or psychosocial needs in order to receive the services they need.
Principle: Coordinated and Easily Navigated Care
Vulnerable young people require a tailored approach that is sensitive to their concerns before the outreach stage and, when they enter a service, require a highly coordinated and easily navigable approach once they cross the threshold. For the highly vulnerable, marginalized by poverty, racial, and ethnic prejudice, or for those who might harbor distrust of “mainstream” institutions, the prospect of finding a place to go for health care is even more challenging. Many of the most marginalized young people may already have been stigmatized or rejected—in their schools, communities, and even by their families. For example, many lesbian, gay, bisexual, and questioning youth, have faced stigma on a very personal level, transgender youth especially so (Brown et al., 2007; Saewyc, 2011). Adolescents and young adults with chronic conditions like HIV are very fearful that they will be further stigmatized or rejected (Harper et al., 2014). Ensuring that adolescent and young-adult services reach out to the most vulnerable youth is one way to bridge them into services.
Principle: Safe Space
Creating easily identifiable and welcoming services is one component that can send the message that young people are valued and important. This is a first step in making the clinical space emotionally and physically safe (Lim et al., 2012). Young people report that office spaces which are unappealing or have little adolescent- and young-adult-specific information are a barrier to care (Fox et al., 2013; Lim et al., 2012). Creating a welcoming safe space includes making sure its appearance and messaging (digital media, posters, artwork, and brochures) communicates diversity and compassion, and this signals to the newcomer that no issue or question is off limits. Letting them know in this way that any issue is welcomed and, consequently, that staff are comfortable handling their issues is the first step in giving them permission to talk.
Principle: Accessibility
Creating services that are accessible, with no barriers at reception, and are easily navigated (especially when, as at MSAHC, they are comprehensive, integrated, and housed in one place) minimizes the burden on the young person to diagnose their own problems and to understand exactly what they need and how to ask for it. For example, it is common at MSAHC for both adolescents and young adults who have had traumatic exposure (the large majority of the
patient population) to come in frequently with urgent needs such as a pregnancy or a sexually transmitted infection. We view it as our service’s responsibility to draw clear connections between the presenting issue and the “real,” underlying need. The MSAHC approach assumes that young people are still learning how to navigate on their own and do not have the experience by which to name and label their concerns. So we ask about all aspects of each young person’s life, including their strengths, hopes, and areas of struggle.
Principle: Engagement
Engagement, which is necessary to maintain young people in care over time, is further encouraged via sensitive yet holistic questioning by the provider (Peake et al., 2005). This use of “active questioning” in inquiring about all aspects of a young person’s life—including each person’s hopes and aspirations—is an essential element in ensuring that the services they get span wellness, prevention, risk reduction, and treatment. The model of services put in place to support this continuum is integrated and comprehensive.
Principle: Holistic Approach Through Integrated, Comprehensive Services Whenever Possible
The holistic approach to assessment and care is best suited to addressing the health behaviors, concerns, and problems of young people, as the risks and vulnerabilities they face are multifaceted and highly interrelated. For example, among U.S. high school students, almost 53 percent engage in two or more risk behaviors, almost 36 percent engage in three or more, and 24 percent engage in four or more (Fox et al., 2010). Most telling, however, is how interrelated risk factors are in terms of poor outcomes. For example, of those (10 percent) whose last intercourse was unprotected, 43.5 percent reported persistent sadness, 41.5 percent reported suicidal thoughts and plans, and 45.9 percent reported problem alcohol behavior. Though, in contrast to studies of adolescents, there are few studies of young adults, many engage in multiple, interrelated risk behaviors (Galambos and Tilton-Weaver, 1998). Clearly, in working with young people, a health provider must assess across a broad range of physical, behavioral, and psychosocial domains. This challenges us to think about young people’s physical health, sexual and reproductive health, and emotional well-being in a highly connected and coordinated way (Woods and Neinstein, 2002), and if we identify an area of risk, to ask about other risks and vulnerabilities.
Young people can be extremely sensitive to the perceptions of others, including their peers, and will often forego care if there is risk of shame and embarrassment (Huppert et al., 2003). If comprehensive services are available only
through collaborations with other service providers or by collocating services, the way they are coordinated and the referral process should be stigma free. At MSAHC, having all services under one roof and as part of an integrated center makes this much easier to accomplish. Because the way services are named or scheduled can inadvertently contribute to stigma (e.g., the names “HIV services,” “sexual assault services,” “mental health,” and “family planning” reveal the reason for a young person’s visit to others), we ask “Can a person’s reason for a visit be identified by other patients in the waiting room?” Having services that are integrated in a physical environment communicates diversity and masks the reasons for any given visit, helping avoid stigma associated with certain concerns.
Principle: Confidentiality
The Society for Adolescent Health and Medicine’s Position Paper states that confidentiality is a cornerstone of health care for adolescents under the age of 18 (Ford et al., 2004), and they need to be actively reassured about confidentiality before they will talk openly about issues (Ford et al., 1997). It matters to young adults, too, because adolescent and young-adult health involves highly personal and sensitive subjects—such as the developing body, sexuality, sex, trauma, or behavioral risks, as well as insecurities and worries about what is normal. All young people, including young adults, need assurance that they can talk confidentially with their provider (Ford et al., 1997), or they may forego care if they are not reassured about privacy and confidentiality (Ginsberg et al., 1995; Klein et al., 1999). Confidentiality laws level the field so all young people can get the services they need, rather than elect not to get necessary care because they fear disappointing adults in their lives or because they fear recrimination. However, physicians too commonly do not discuss confidentiality with adolescents, and so adolescents are generally unaware of their rights to confidential services (Lehrer et al., 2007; McKee et al., 2001).
Young adults who are covered by a parent or guardian’s private insurance plan may also have concerns about the reason for their visit being disclosed by an EOB sent to the policyholder when they have used services for sensitive issues. At MSAHC, patients who do not wish to use a parent’s insurance plan are not billed, but for many health providers, an effort to fundraise to cover the costs of services may not be viable. This can be properly addressed only if changes are made to the current practice of sending an EOB to the primary policyholder.
At MSAHC, an adolescent- and young-adult-sensitive consent-to-care process helps ensure confidentiality not just for sexual and reproductive health care but
also to secure informational, social, psychological, and physical privacy. Ensuring that the care model is supportive of one-on-one youth–provider interactions is a key element of confidential care, and it encourages young people to freely share their concerns. This requires that staff are competent and comfortable in negotiating this confidential space, for instance, asking parents to wait in the waiting room prior to taking a history and reassuring them that they will be invited back in after the physical examination to discuss any remaining issues after a confidential interview with the young person.
Principle: Provider Preparation, Comfort, and Communication
A final set of considerations for ensuring youth-friendly care relates to provider comfort and competencies. Research suggests that clinician-related barriers to adolescent care include provider insensitivity (Ford et al., 1999); insufficient/inadequate communication (Lim et al., 2012); lack of comfort, knowledge, and skills regarding sexual and reproductive health; discomfort with discussion of sexual behavior with adolescents (IOM, 2009); and lack of time to spend with each patient (McKee et al., 2001). Young people require a relationship-based approach because they place a higher importance on the personal characteristics of their medical provider than adults (Fox et al., 2010). Working with young people is best done by those who like adolescents and have adolescent-specific training, so at MSAHC, care is mostly provided by adolescent specialists, and a great deal of emphasis is placed on interdisciplinary collaboration and cooperation. Having well-trained staff helps in building a culture in which young people are dealt with respectfully, in a nonjudgmental way, and are supported in learning to make their own decisions. Although there are no recent studies as to what type of provider provides adolescents with health care, past studies have shown that most adolescents are seen by general pediatricians or family practitioners (Rand et al., 2007) and, given the low number of adolescent medicine physicians across the country, the field of adolescent health is faced with significant resource limitations.
CONCLUSION
The service-design-and-delivery recommendations presented here will not provide solutions to all health disparities faced by adolescents and young adults. Poor health outcomes related to the relationship between health status and poorer education (Winkleby et al., 1992), criminal-system racial disparities (Iguch et al., 2005), or rural versus urban residence require broader social solutions. Nevertheless, we believe that adolescent- and young-adult-friendly health services, such as
MSAHC, provide tremendous opportunities to better understand how many disparities related to lack of access, poor-quality services, or services that are inadequate because they are not designed to engage young people and sustain them in care might be addressed.
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ACKNOWLEDGMENTS
The authors would like to acknowledge the Evaluation Team at ICF International for their effort in studying and iterating the principles of adolescent- and young-adult-friendly care and operation embedded in the design and delivery of services at the Mount Sinai Adolescent Health Center. They are Christine Walrath, Gingi Pica, Lisa Carver, and Cathy Lesesne.
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