5
Issues to Address

Flaws in the U.S. health system are particularly apparent when the needs of adolescents are considered. This group’s needs are distinct, extremely complex, and include—for many—insufficient health coverage, lack of financial resources, lack of understanding of the systems through which health care is available, lack of confidential services, and inadequate transportation. There are relatively few specialists who focus on adolescents’ needs, compared with those of other age groups. In addition, most health care providers who encounter adolescents lack the knowledge and skills needed to address their developmental needs and the distinct issues that influence their health, safety, and well-being. Just as adolescents can find it awkward to be neither children nor adults, the health care system does not easily adapt itself to their changing needs as they mature.

Workshop discussions identified a set of issues that can affect any adolescent: a need for confidentiality and privacy despite continued dependence on parents or guardians; mental health issues that are unlikely to be recognized without screening; the convergence of health issues and other life problems and the stresses of adolescent development; and exposure to substance abuse or other health risk behaviors to which adolescents are particularly prone. Insurance plans generally provide only limited coverage for dental and mental health or substance use disorders, and older adolescents and young adults may have serious difficulty obtaining or maintaining coverage even if they are not in difficult life circumstances.

On top of these issues, many adolescents in the United States face far



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Challenges in Adolescent Health Care: Workshop Report 5 Issues to Address Flaws in the U.S. health system are particularly apparent when the needs of adolescents are considered. This group’s needs are distinct, extremely complex, and include—for many—insufficient health coverage, lack of financial resources, lack of understanding of the systems through which health care is available, lack of confidential services, and inadequate transportation. There are relatively few specialists who focus on adolescents’ needs, compared with those of other age groups. In addition, most health care providers who encounter adolescents lack the knowledge and skills needed to address their developmental needs and the distinct issues that influence their health, safety, and well-being. Just as adolescents can find it awkward to be neither children nor adults, the health care system does not easily adapt itself to their changing needs as they mature. Workshop discussions identified a set of issues that can affect any adolescent: a need for confidentiality and privacy despite continued dependence on parents or guardians; mental health issues that are unlikely to be recognized without screening; the convergence of health issues and other life problems and the stresses of adolescent development; and exposure to substance abuse or other health risk behaviors to which adolescents are particularly prone. Insurance plans generally provide only limited coverage for dental and mental health or substance use disorders, and older adolescents and young adults may have serious difficulty obtaining or maintaining coverage even if they are not in difficult life circumstances. On top of these issues, many adolescents in the United States face far

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Challenges in Adolescent Health Care: Workshop Report more serious challenges. Specific kinds of vulnerability bring somewhat different health challenges that frequently overlap. In general, vulnerable adolescents are at risk from substance abuse, risky sexual behavior, family dysfunction and abuse, and violence. Many programs exist to help and support them, and considerable ingenuity has gone into planning and adapting these programs. Government at all levels plays a critical role, as do a host of other institutions and private funders. Schools can be important partners in building community health resources. Expertise from a wide range of disciplines is incorporated into the care that is available, and countless individuals in every community are working hard to make the most of the resources they have to offer this vulnerable group. But all this is not enough. Just as the discussion revealed that the needs are generally consistent across communities, the workshop speakers consistently also revealed significant gaps in the care that adolescents are receiving. In short, while these workshops were not exhaustive examinations of the issues, together they strongly suggest that both the system through which care is delivered and ways of reaching individual adolescents are insufficient to meet the need. The committee will return to these issues, but the areas of agreement evident at the workshops will be a valuable foundation for its work. SYSTEM CHALLENGES Gaps in the health care system serving adolescents were mentioned repeatedly at both the community forum and the research workshop. They are straightforward and generated no controversy: Too many adolescents have either no health insurance coverage or inadequate health insurance coverage. The programs, both volunteer-run and publicly sponsored, that attempt to serve adolescents have insufficient funding to adequately serve all those who need them. The public and private programs that exist provide fragmented coverage that is disconnected and poorly coordinated. Excellent programs are available—although not in every place where they are needed—but the burden is often on adolescents and their families to identify the problem that needs treatment, identify a place where they can get help, get themselves there, and figure out how it might be paid for. Moreover, providers must often treat adolescents without access to medical histories or opportunities to collaborate with professionals from other relevant disciplines who can address other elements of their patient’s situation.

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Challenges in Adolescent Health Care: Workshop Report Many prevention strategies and treatments that are supported by compelling research are not available to the adolescents who need them most. The most critical omissions include treatments for mental health and substance use disorders, utilization of dental health services, and strategies that can target the early behavioral patterns likely to lead to future health problems. GAINING ADOLESCENTS’ TRUST Another set of challenges mentioned by many presenters relates to the relationships between health care providers and adolescents. Consent and confidentiality are critical, and both legal requirements and practices vary among states. Adolescents may be particularly reluctant to let their parents know that they are seeking reproductive health care or mental health care or make them aware of problems they are facing, yet the provider may be required to inform parents in certain situations, be restricted to seeing the patient for only a few visits before obtaining parental permission, or worry about itemized billing being sent to the parents. Yet adolescents may not ever seek care for sensitive problems if they believe their parents will be notified (Lehrer et al., 2007). Practitioners also sometimes face dilemmas related to the health or other status of parents, which presents a different set of questions. For example, a child who is asked if he or she ever drives with anyone who has been drinking may respond “yes, my Dad,” or the practitioner may become aware that the parent has a drug or mental health problem or engages in violent behavior. In such cases, the practitioner’s responsibilities may be complex, while his or her options for addressing the parent’s problems are limited. Questions about confidentiality are not the only ones that can compromise adolescents’ willingness to seek care. Many participants talked about adolescents’ reluctance to seek help for mental health problems because of embarrassment, fear of stigma, or lack of understanding, in addition to the fears they may have about disclosing sensitive information to their parents. Thus, one participant suggested that making primary care universally available may not be enough—the typical clinician’s office may just not be a place adolescents will go on their own to seek certain kinds of care. Systems in which every kind of care is available under one roof, in a place that is easily accessible to adolescents, may have better capacity to overcome that particular barrier, which can affect almost any adolescent. Trust is also key on an individual level. Adolescents need adults who are not only equipped professionally to diagnose and treat their prob-

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Challenges in Adolescent Health Care: Workshop Report lems, but also are able to establish a connection that promotes trust. The most vulnerable adolescents frequently lack consistent relationships with caring adults and are most in need of connectedness. Many participants talked about strategies for reaching adolescents and proving to them that if they seek and accept care, they will be safe. However, given the diversity of adults who work with these young people—from pediatricians and psychiatrists to teachers, social workers, and truant officers—much more could be done to make these strategies integral to adolescent care. QUESTIONS FOR FURTHER EXPLORATION Several important issues arose during the two workshops that deserve further explanation. Research on the effectiveness of both selected treatment interventions and different systems of providing care. Participants noted that some persuasive research findings that are available are not being applied widely, for example, in mental health and substance use disorder treatment. In other areas, additional research is urgently needed, for example, to provide best practices for providing services to vulnerable populations of adolescents, such as adolescents who are lesbian, gay, bisexual, transgender, or questioning their sexual orientation; low-income adolescents; adolescents in foster care and the juvenile justice system; and runaway and homeless adolescents. Government officials, in particular, need criteria with which to assess the value of alternative approaches as they allocate funds and consider ways to structure the programs they oversee. Researchers have identified key challenges to providing high-quality care for this age group, and practitioners and others have provided models for ensuring continuity of care and addressing many of the other challenges. The workshops also explored strategies that government could pursue. Analyses of the effectiveness of these policies and models of delivering health care to adolescents are desperately needed. A broader view of the adolescent period is needed. The adolescent period is characterized by transitions: leaving childhood, entering adulthood, and all that transpires during the 8 to 10 years between these two developmental stages. Not only are the needs of younger adolescents ages 10 to 13 very different from those in middle adolescence (ages 14–17) and young adults (ages 18–21), but also adolescence itself is a concept with imprecise boundaries. Scaffolding is the term used to describe the ways in which adults can provide a supporting structure to guide adolescents through these transitions; it is a strategy that could be much more widely used—and one that merits additional study. Parents and families are critical. The influence of parents and fami-

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Challenges in Adolescent Health Care: Workshop Report lies was mentioned many times, although it was not the focus at either of the workshops. While it stands to reason that improving a family’s interactions, its approach to medical issues, and other factors may be the best way to improve the health status of a adolescent patient, strategies to achieve this goal are not well articulated. Many programs certainly acknowledge the issue and look for ways to address the broader needs an adolescent may have, whether with family members, the criminal justice system, or school, but resources and strategies for doing so are scarce.1 Recent developments in the study of neurological and cognitive development are likely to be very useful both to the overall understanding of adolescents and to the development of effective strategies and programs for members of this age group. As researchers and practitioners seek to improve their understanding of adolescence in important areas, such as decision making, risk assessment, and a connectedness, it will be important for them to monitor this blossoming field. However, research centers lack institutional and funding supports for collaboration among specialists in each of the fields for which adolescence is a concern. 1 A useful resource in this regard is A. Rae Simpson’s Raising Teens: A Synthesis of Research and a Foundation for Action (2001). See http://hrweb.mit.edu/worklife/rpteens.html.