Ethical Issues and Dilemmas in Caring for Children and Adolescents

Adverse Childhood Experiences and Resilience:

Addressing the Unique Needs of Adolescents Samira Soleimanpour, PhD; Sara Geierstanger, MPH; Claire D. Brindis, DrPH

From the Philip R. Lee Institute for Health Policy Studies (Dr Soleimanpour, Ms Geierstanger, and Dr Brindis), and Adolescent and Young Adult Health National Resource Center (Dr Brindis), University of California, San Francisco, Calif Conflict of Interest: The authors declare that they have no conflict of interest. Address correspondence to Samira Soleimanpour, PhD, 3333 California St, Suite 265, San Francisco, CA 94143-0936 (e-mail: samira. [email protected]).

ABSTRACT

Adolescents exposed to adverse childhood experiences (ACEs) have unique developmental needs that must be addressed by the health, education, and social welfare systems that serve them. Nationwide, over half of adolescents have reportedly been exposed to ACEs. This exposure can have detrimental effects, including increased risk for learning and behavioral issues and suicidal ideation. In response, clinical and community sys- tems need to carefully plan and coordinate services to support adolescents who have been exposed to ACEs, with a particular focus on special populations. We discuss how adolescents’

needs can be met, including considering confidentiality con- cerns and emerging independence; tailoring and testing screening tools for specific use with adolescents; identifying effective multipronged and cross-system trauma-informed in- terventions; and advocating for improved policies.

KEYWORDS: adolescent health policy; adolescents; adverse childhood experiences; resilience; trauma

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ADVERSE CHILDHOOD EXPERIENCES (ACEs) are increasingly a focus of both research and interventions nationwide, given emerging evidence of their high preva- lence and lifelong health impacts. To date, much of the ACEs literature has focused on children and adults. Greater attention should be paid to the distinct developmental needs of adolescents and how the systems that serve them can more adequately respond.

Distinct from both childhood and adulthood, adoles- cence is a unique developmental stage of rapid growth during which physiologic, cognitive, social, and emotional changes occur simultaneously. During this time (ages 11 to 21 years), adolescents experience phys- ical and sexual maturation, develop more abstract and long-term thinking, and engage in risk-taking behaviors as they establish their independence. Adolescents who have experienced ACEs may be less able to successfully navigate this transformational stage as a result of the damaging effects of traumatic experiences on their emotional and cognitive development and/or lack of or limited positive supports.

A large body of research has demonstrated that invest- ments in early childhood can yield significant social and economic returns in adulthood and that this developmental stage should be prioritized for investments, particularly for disadvantaged youth.1,2 However, this research also supports the notion that to maximize returns, there is a concurrent need to invest resources to address the needs

of adolescents, particularly for those who may not have received needed supports in early childhood and/or who continue to experience ACEs into adolescence. Thus, adolescence represents a key window of opportu-

nity to ameliorate the short- and longer-term impacts of trauma and positively alter the life course trajectory. High rates of trauma exposure have led to a pressing need to identify youth who have been exposed; recognize the varied ways in which youth respond to these experi- ences; identify effective strategies to provide trauma- informed care; and develop policy recommendations to prevent and respond to the impacts of ACEs. There are many aspects of ACEs that affect adolescent

health and warrant in-depth exploration. Here we provide an overview of these issues, with the hope that it helps identify areas for further analysis and critique in the literature.

PREVALENCE AND IMPACTS OF ACES IN ADOLESCENCE

Researchers have defined ACEs as including physical or emotional abuse or neglect, sexual abuse, domestic violence, substance abuse or mental illness in the home, parental separation or divorce, having an incarcerated household member, and not being raised by both biolog- ical parents.3 Recent research indicates that over half (54%) of all adolescents aged 12 to 17 years in the

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United States have been exposed to at least one of these experiences, and over one-quarter (28%) experienced 2 or more.4 Children living in homes with lower household in- comes or in less safe and supportive neighborhoods, as well as those who qualified as having special health care needs, were more likely to experience ACEs.5

Furthermore, certain subgroups of adolescents face heightened risks, including youth who are lesbian, gay, bisexual, transgender, or questioning (LGBTQ) and those who are incarcerated or involved in the juvenile justice system.5–7 Despite the high prevalence, the majority of adolescents with trauma exposure do not receive needed health services that are critical to identifying and addressing these concerns.8

The effects of trauma during childhood and adoles- cence have impacts on adolescent health and educational status, including a greater likelihood of repeating a grade in school, lower resilience, increased risk for learning and behavioral issues, suicidal ideation, and early initiation of sexual activity and pregnancy.5,8–10 In fact, there is a much higher prevalence of these negative impacts among adolescents aged 12 to 17 after experiencing more than one ACE. With 3 or more ACEs, nearly half (48%) of youth experience low engagement in school, 44% cannot stay calm and controlled, and 41% demonstrate high externalizing behaviors.11 Moreover, exposure to trauma in childhood and adolescence can lead to negative consequences in adulthood, including chronic illness and decreased productivity,12,13

especially when they are experienced cumulatively or chronically.

4,5,14–17

Despite the negative impacts of ACEs, literature is emerging on the countereffects of resilience and pro- tective factors. Resilience theories focus on strengths that individuals possess internally, such as coping skills, and externally, such as family and community supports, rather than risks and deficits, and how these strengths can help them overcome risk exposure or trau- matic experiences.

17–20 Positive individual-, family-,

and community-level factors, including high levels of family functioning and parental engagement, are as- sociated with favorable outcomes for children and adolescents who have been exposed to ACEs.21–23

Family functioning in particular is a protective factor against poverty, neighborhood violence, poor parental relationships, and adolescent mental health concerns.

24–26 One national study found that resilience,

defined as “staying calm and in control when faced with a challenge,” lessened the impacts of ACEs on grade repetition and poor school engagement.5 Another study examining similar data found that many factors mediate the relationship between increasing ACEs expo- sure and negative outcomes, including residing in a safe neighborhood, attending a safe school, and parental monitoring of friends and activities. Understanding, identifying, and nurturing protective home, school, and community elements may help diminish the overall impact of youth’s exposure to ACEs.4

RESPONDING TO THE UNIQUE NEEDS OF ADOLESCENTS

Adolescence represents a unique period for major social, psychological, and physical development, and a time in which youth frequently have unmet physical and mental health needs. For example, 20% of younger adolescents (10–15 years) and 27% of older adolescents (16–17 years) did not receive annual well-child visits, and 64% of adoles- cents with mental disorders did not receive services to address their illnesses.

27–29 Furthermore, those from

disadvantaged backgrounds are at the highest risk of not having regular health maintenance visits or receiving needed mental health care.27,29–31 Many adolescents also tend to engage in health behaviors that place them at risk for the leading causes of morbidity and mortality.32 As ad- olescents begin to gain greater independence and assume individual responsibility for daily health habits, develop new social relationships, and individuate from their par- ents, these changes bring new opportunities and challenges for improving health and preventing disease. In response, clinical and community health, educational, and social welfare systems need to carefully plan and coordinate ser- vices to support adolescents who have been exposed to ACEs, with a particular lens on special populations—for example, youth who have been in the foster care system; those who have been incarcerated, homeless, or substance dependent; and/or LGBTQ youth.

CONFIDENTIALITY CONCERNS

Pediatric care for youth aged 0 to 21 typically includes a strong focus on parental involvement. However, patient privacy is vital to assuring patient-centered services during adolescence, when the complexity of medical and behav- ioral health needs increase. Professional guidelines recom- mend that health care providers spend time alone with their adolescent patients beginning in early adolescence (11 to 14 years).33 These encounters help adolescents learn how to manage their health with greater independence—for example, by learning how to manage a chronic health con- dition, avoid health-damaging behaviors, and navigate suc- cessful relationships with health care providers. However, one study of national data found that only 34% of adoles- cents had time alone with their providers, with younger girls and Hispanics youths of all ages being less likely than their peers to have time alone.34 Adolescents who have experienced trauma are particularly in need of time alone with providers, as it provides the opportunity to begin to develop trusting relationships to safely disclose their experiences. In addition to time alone with providers, adolescents

need assurances that sensitive information they share will be confidential. In fact, adolescents who engage in high- risk health behaviors are likely to cite confidentiality con- cerns as a reason for foregoing health care.35 There are confidential care laws that allow adolescents to consent to their own health care without parental notification. These laws differ by state, but they appropriately allow

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for greater independence in the adolescent–provider rela- tionship, particularly in the delivery of sensitive services, such as reproductive and mental health care.36

Empirical research has shown that adolescents are more likely to disclose sensitive information when providers assure confidentiality.37 A recent study also found that the use of motivational interviewing, to facilitate intrinsic motivation within the client, and the provision of confiden- tiality assurances increased the likelihood of providers spending time alone with their adolescent patients.38

SCREENING AND IDENTIFICATION

Despite high prevalence rates of trauma and the increasing awareness of the importance of this topic, screening for traumatic experiences in adolescent health care settings has been inconsistent. For example, one study of female adolescents seeking health care in urban settings found that while 40% of clinic users had experienced inti- mate partner violence, less than one-third (30%) reported ever being screened for intimate partner violence in a clin- ical setting.39

Low screening rates are partly attributed to a lack of appropriate assessment tools. Few instruments have been sufficiently validated for use with adolescents, and few examine trauma symptoms beyond posttraumatic stress disorder.40 Researchers have found traditional diagnostic categories of trauma exposure, including posttraumatic stress disorder, limiting in that individuals are diagnosed on the basis of symptoms triggered by a specific event, and they thus do not capture exposure to multiple adverse experiences or events that may collectively warrant diag- nosis. As a result, newer diagnostic categories, such as “developmental trauma disorder” and “complex trauma,” have been created to address these limitations. However, corresponding assessment tools have not yet been devel- oped.40 Existing validated tools for use with adolescents are also lengthy and can be challenging to administer dur- ing brief clinical visits where many issues, including sexual activity, mental health, substance use, and school experi- ences, need to be assessed.

Although in-depth information or critical analysis of available screening tools that assess for ACEs is beyond our scope here, current tools used in adolescent clinical practice include the Center for Youth Wellness (CYW) ACE–Questionnaire Child, Teen, & Teen Self-Report, and the Yale–Vermont Adversity in Childhood Scale (Y-VACS).41 The National Child Traumatic Stress Network also provides a comprehensive list of validated tools to assess various aspects of trauma exposure.42

(See also Bethell et al43 in this supplement for further detail on screening tools.)

Low screening rates also reflect challenges within the health care delivery system, particularly limited awareness of ACEs,44 lack of consensus and formal training on screening tools, and lack of formal training of providers in the prevalence and incidence of trauma or how to imple- ment trauma-informed care.45,46 Providers without ready access to behavioral health services may feel hesitant to

uncover trauma without having an adequate system in place with which they can respond, such as through referrals to follow-up care. Moreover, screenings are often not conducted because providers do not have either the time or the reimbursement incentive to screen or address many of these issues. Approaches to screening also present opportunities and

challenges. In particular, there is some debate as to whether all youth should be screened during initial encounters with service providers (universal screening) or if select youth should be screened during follow-up visits after patient–provider rapport has been established. Advantages of universal screenings are that they are brief, are less resource intensive, and can quickly identify youth who are at risk and who require additional, more intensive screening and follow-up. Additionally, providers can immediately understand each youth’s trauma history and target subsequent encounters and interventions accord- ingly. However, the screening process itself can potentially retraumatize a patient and hinder progress if there are not appropriate interventions or referrals in place,47 which would instead support screenings at follow-up visits after initial trust has been established. Furthermore, emerging research demonstrates that cur-

rent screenings for ACEs should be expanded to include other events that can impact youth’s health and develop- ment, such as economic hardship, family relationships, community stressors, peer relationships, discrimination, and school experiences,48 as well as resilience and protec- tive factors. Clinical and community programs should implement strategies for the early identification of at-risk youth through comprehensive assessments beyond the traditional ACEs while balancing the time required for these comprehensive assessments. A promising area is the inclusion of Bright Futures recommendations of screening for mental health disorders and emotional and behavioral problems as part of an annual checkup (Table 1).49 This is a requirement of the Affordable Care Act and is reimbursable.

50 Under the act, which requires

the incorporation of Bright Futures recommendations, pro- viders have been able to maximize the opportunity for screening, thus resolving traditional barriers of lack of reimbursement for screening and follow-up.

INTEGRATED SYSTEMS OF CARE

Once identifying youth as having been exposed to trauma and suffering from the consequences, there must be a strong network of coordinated care to provide appro- priate referrals to individual, group, and/or family services. These should include home-based supports for youth and their families, as well as academic support and school sup- ports for situations where students might experience trig- gers, situations, or stimuli that bring up memories of traumatic experiences. Mental health and other services, such as medical, education, and juvenile justice, should be integrated to promote coordination of care and efficient use of resources. (See also Brown et al51 and Vu et al52 in this supplement.) Not all professionals who work with

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adolescents need to be specialists in trauma, but they should be trained to be able to identify adolescents in need and know how to appropriately refer them to trauma services. While each sector needs to focus on the outcomes that it is designed to influence, together they can achieve a greater overall impact through their complementary ap- proaches and support.53 It is also important that adolescent perspectives be brought into the development of trauma- infused health services.54

Integration and coordination are critical, yet significant challenges remain in practice. One of the largest barriers is information sharing across sectors. For example, the Health Insurance Portability and Accountability Act pro- vides safeguards for protecting individuals’ personal health information, which can limit providers’ ability to share health information about mutual clients across agencies to better coordinate care. However, there are exceptions to the rule that allow sharing information for the purpose of treatment. Furthermore, written authorizations from pa- tients and their parents can be obtained to share information with entities outside the health care system, such as school mental health providers.

55 Business associate agreements

that clearly outline how sensitive information will be handled between agencies can also be implemented; several have been developed and are available through the US Department of Health and Human Services.

EVIDENCE-BASED INTERVENTIONS

Developmentally and culturally appropriate health ser- vices are instrumental in mitigating the short- and longer-term risks of ACEs. Evidence is emerging about the effectiveness of clinical treatments to intervene with children who have experienced trauma and adversity. The National Child Traumatic Stress Network recommends a variety of strategies and tested interventions for working with specific age populations.56 In particular, Trauma- Focused Cognitive–Behavioral Therapy has an extensive evidence base documenting its effectiveness in the treat- ment of trauma.57,58 This approach uses individual and group cognitive–behavioral therapy to address the multiple domains of trauma and to teach youth skills in how to regulate their behavior, process the trauma, and improve their sense of safety and trust.

Schools are also uniquely positioned to support adoles- cents who have been exposed to trauma or violence given

the amount of time youth spend there. According to a national survey, nearly all schools nationwide (97%) reported having at least one staff member whose responsi- bilities included providing mental health services to stu- dents; most commonly these are school counselors, nurses, school psychologists, and social workers.

59 Nation-

wide, there have also been several initiatives to create trauma-informed schools. These efforts focus on the use of multitiered interventions to address the varying needs of youth exposed to trauma and violence.60 These strate- gies can be tailored to the degree of trauma individual stu- dents are exposed to; in addition, schools are uniquely positioned to build resiliency and strength among young people throughout the school population. An intervention designed specifically for use in schools is Cognitive– Behavioral Intervention for Trauma in Schools (CBITS).61

CBITS, which is founded on cognitive–behavioral therapy, provides mental health screening and brief therapy ses- sions to help youth reduce trauma-related symptoms and promote coping skills. CBITS is delivered through 10 weekly group sessions led by a school-based mental health professional, such as a school psychologist or social worker, with groups of 6 to 8 participating youth.62 CBITS has been shown to lower the negative impacts of trauma exposure, including depression, psychosocial dysfunction, and academic functioning, particularly among diverse, low-income students.63

Another emerging approach to address the impacts of ACEs is the use of mindfulness interventions in school and community settings. These interventions focus on increasing individuals’ awareness of current experiences and mental states while minimizing thoughts of past or po- tential future stressful experiences. Mindfulness interven- tions, which include yoga and meditation, have been found to increase youth resilience and self-regulation of stress, emotions, and behavior.64–67

The federal government took an important step toward reinforcing trauma-informed approaches in schools through the Every Student Succeeds Act (ESSA), signed by President Barack Obama in December 2015.68 This bipartisan measure reauthorized the United States’ na- tional education law. Among other strategies, the ESSA provides funding for school-based mental health services and evidence-based, trauma-informed programming (Table 2).

Table 1. Recommendations for Annual Adolescent (11–19 Years) Checkups Related to Adverse Childhood Experiences (ACEs) and Resil-

ience33,50

Adolescent Annual Check-up Components

All adolescents and parent/guardians should be informed about confidentiality and the following components of the visit should be conducted with parents present and/or with the adolescent alone as appropriate:

1. Health history, including changes in physical or emotional health status warranting further assessment 2. Physical examination, immunizations, and screenings 3. Observations of parent-youth interaction and youth engagement in health decisions 4. Screening/discussion of the following priority topics related to ACEs/resilience:

� Emotional well-being: coping; moods, emotions, and mental health; resilience/protective factors � Violence and injury prevention: domestic violence, intimate partner violence, community violence � Social and academic confidence: connectedness with family, peers, and community; interpersonal relationships; school performance

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FUTURE PRACTICE, POLICY, AND RESEARCH RECOMMENDATIONS

The field of adolescent health care is in a nascent phase in understanding how to screen and provide services for ad- olescents with ACEs. In many regards, the focus on ACEs raises the challenge of an overall dearth of available pedi- atric and adolescent mental health professionals throughout the system. To overcome these issues and a number of gaps, several strategies are needed.

First, given the lack of mental health providers, policies are needed and funding allocated to train and build the ca- pacity of health care providers to assess trauma and provide trauma-informed care with a focus on strengths and fostering resilience.69 Curricula that address trauma informed practices, including patient-centered, culturally competent, and emotionally supportive care, should be embedded into primary care and adolescent health provider training programs. Educators and social services providers should also be trained in trauma-informed practices, such as providing safe spaces in schools for youth to calm down after experiencing triggers or stressful situations, not taking students’ behaviors personally or reacting with punitive or stressful responses, and offering caring, sup- portive words, which can have immense impacts on trau- matized youth.

Second, confidential care and time alone with providers must be emphasized as well, possibly through standardized training to ensure that providers feel comfortable speaking to parents about the importance of nurturing their chil- dren’s autonomy, as well as education regarding the confi- dentiality laws that apply to adolescent health care. Effective coordination of care between health care, school, and community services is also needed. Policies that allow for information sharing across sectors are critical to this care coordination as well.

Third, improved screening tools designed specifically for adolescents that are rigorously tested and that are not burdensome in clinical or school-based settings are needed. These validated tools can then be recommended as part of clinical guidelines, similar to Bright Futures’ recent addi- tion of suggested screening tools for adolescents’ sub-

stance use and depression to their preventive care guidelines.49 Mainstreaming screening and trauma- infused care into existing policies, programs, and practices assures that these efforts are not merely an extra add-on but rather are recognized as core to evidence-based programs and their funding supports. Screenings should only be con- ducted after ensuring that services or referral sources are in place to appropriately address the unique needs of youth who are identified as needing any level of intervention. This requires appropriate capacity and training among pro- fessionals and nonprofessionals who interact with youth, and appropriate community referrals as necessary. Fourth, those working in health and education settings

are all too familiar with the challenge of treating adoles- cents, only to send them back to the environments in which they are experiencing trauma, which can signifi- cantly hinder any progress. It is critical that interven- tions are identified that can effectively impact the roots of adolescents’ adverse experiences and address them in relationship to their family members who may also have been be exposed to ACEs. Interventions should also be coordinated across sectors, including ed- ucation, health, and social services. Furthermore, these interventions should address health disparities and the social determinants of health that coincide with ACEs, including economic instability, limited education, and unsafe home and community environments. Fifth, evidence-based interventions in school, health

care, and work settings need to be expanded. Interventions should also be tailored to appropriately serve adolescents who may have greater needs as a result of experiencing multiple ACEs without the protective role of supportive families, schools, and communities, such as foster care, LGBTQ, runaway or homeless, and juvenile justice system–involved youth. Finally, there is a need for expanded research on how

ACEs affect adolescents, either the trauma experienced during childhood, which now impacts risk-taking behav- iors during adolescence, or accumulated or new trauma that occurs during the adolescent years, including any of the aforementioned ACEs, as well as intimate partner violence in dating relationships and other issues that arise

Table 2. Brief Overview of the Every Student Succeeds Act (ESSA) and Provisions to Support Youth Exposed to Adverse Childhood Expe-

riences 68

ESSA is the primary statute governing the federal government’s role in K–12 education and was signed by President Barack Obama in December 2015. This measure reauthorizes the Elementary and Secondary Education Act (ESEA) that was first passed during President Lyndon Johnson’s administration, which was overhauled in 2001 by President George W. Bush’s administration as the No Child Left Behind Act. The ESSA includes many provisions to ensure student success, including ensuring access to equitable education for all students; supporting locally developed, evidence-based interventions; increasing access to high-quality preschool; targeting resources to students in schools with the highest needs; and holding states accountable to supporting every child to be career or college ready. The ESSA also has several provisions that support trauma-informed practices, including but not limited to providing funding for activities and programs that support the following:

� Expansion of school-based mental health services. � Training of school personnel to understand how trauma affects students and when to refer them for services, as well as in “effective and trauma- informed practices in classroom management.”

� Reduction of exclusionary discipline practices and promotion of positive behavioral supports and interventions. For more information, see http://www2.ed.gov/policy/elsec/leg/essa/essafaqstransition62916.pdf.

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in adolescence. Perhaps most importantly, additional research is needed on which interventions can best respond to the unique needs of adolescents, taking into account family dynamics, confidentiality, and community contexts, as well as the specific risk behavior profile of adolescents. Moreover, it will be important to monitor and evaluate im- plementation of ESSA and similar initiatives on the state and local levels, including whether they remain in place with the change in the presidential administration in 2017.

Without investments to identify and treat the impacts of ACEs in adolescence, there can be tremendous costs at the individual and societal level in future health and productivity. Together, and through the development of multipronged approaches, we have the ability not only to impact adolescence as a critical phase of development but to also reduce the impact of childhood trauma on the life course as adolescents successfully transition into adulthood.

ACKNOWLEDGMENTS Financial disclosure: Publication of this article was supported by the

Promoting Early and Lifelong Health: From the Challenge of Adverse

Childhood Experiences (ACEs) to the Promise of Resilience and

Achieving Child Wellbeing project, a partnership between the Child and

Adolescent Health Measurement Initiative (CAHMI) and Academy-

Health, with support from the Robert Wood Johnson Foundation

(#72512).

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