The Benefits of Transitioning Plans
Increased survival among children and youth diagnosed with HIV infection can be attributed to the monumental treatment advances that have been made during the past 25 years. HIV spectrum disease, known until recent years as an illness with a fatal outcome, is now considered a relatively new chronic illness among children and adolescents.1
As young HIV-infected patients age, they will inevitably be required to leave pediatric care and receive medical and psychosocial services at adolescent or adult care settings. This transition involves an adjustment to new providers and surroundings as well as to an entirely new health care approach that is reliant on a young person's capacity for self-care.
To prevent this transition from compromising a patient's care, providers should be mindful of the timing for a patient's transition, and well in advance of that event should set in motion a tailored process that adequately prepares the patient and family members for entry into the new adolescent or adult setting. This process should be informed by any cultural factors that could compromise or support a successful transition.
This module explores the key issues related to transitioning from pediatric to adolescent and adult care settings and offers practical strategies for devising transition plans for youth of various ages.
Upon completion of this module, providers will be able to:
- List 2 examples of how cultural beliefs on growing up and becoming independent can influence a family's process of allowing an adolescent to assume responsibility for his or her own health care.
- Describe 2 differences between pediatric and adult models of care that should be considered when designing a patient's transition plan.
- List 2 key characteristics of a transition plan for patients moving from pediatric to adolescent services.
- List 2 key characteristics of a transition plan for patients moving from adolescent to adult services.
- Identify 3 key principles of a successful transition plan for patients aging into adult services.
The course may be navigated either by selecting the "Next Page" button at the bottom of each screen, or by using the course outline buttons in the left navigation column.
All users will be asked to complete a final evaluation to help the sponsors assess the value of the course.
Make Transitioning a Process
Several historical, epidemiological, and psychosocial factors that distinguish HIV infection from other illnesses should be considered when transitioning youth to more mature care settings:
- Pediatric HIV infection is usually a "family unit" disease: the illness often occurs in the mother and other family members.
- In the United States, HIV infection disproportionately affects racial/ethnic minority communities and is often associated with poverty and substance abuse.
- Because of parental illness and death, the affected or infected child's caregivers (for perinatally infected youth) are often not the child's biological parents.
- The stigma of HIV often leads to social isolation among youth.
- Adherence to HIV medication regimens is extremely difficult for young patients to achieve.
- The level of experience with death among adolescents with HIV may be higher than it is among adolescents who have other illnesses.
- The issues surrounding puberty and sexual development are exaggerated and there is a greater potential for bad outcomes.
The effects of HIV infection on normal adolescent development are particularly evident among teens who acquired the virus perinatally. Many have noticeable delays in their cognitive, physiological, psychological, and social profiles. Delays, as in the areas of cognition and body maturation, are directly associated with central nervous system disease caused by the virus. Other interruptions result from frequent and lengthy bouts with illness, medication side effects, and social isolation.
For youth who acquire HIV during adolescence--when it is primarily sexually transmitted--the normal challenges of adolescence are often compounded by additional stressors, which can include cultural conflicts between parents and children as well as parental rejection of a sexual orientation. However, these youth have already mastered many of the developmental milestones before infection, so any notable developmental delays are more likely to have resulted from a comorbid health or psychological condition unrelated to the disease, such as sexual abuse and substance abuse.
Successful transition involves a patient-tailored process; it is not a one-time event.
The following principles can help to ensure a smooth transition of care between pediatric, adolescent, and adult care programs: 2
- The provider should begin the process early, working as a team with the youth and then relevant caregivers.
- Services should be appropriate to the youth's developmental age as well as biological age.
- Services should be culturally and linguistically appropriate.
- Programs should be designed to address issues of concern related to sexuality, growth and development, mental health, substance use, and other health and behavioral concerns.
- Programs should focus on continued education or vocational training, which can provide the youth with both useful skills and hope for the future.
- The transition process should enhance youth autonomy, cultivate a sense of personal responsibility, and facilitate self-reliance.
- The transfer of care should be individualized.
- A designated professional, working with the youth and family members, should take responsibility for guiding the process.
Make Transitioning a Process
How Family Affects Transitioning
HIV-infected youth and their families, who are coping with a complex chronic illness, are exceptionally vulnerable to the challenges that can arise when young patients transition from a family-oriented system of care to one in which they are expected to take on more responsibility for managing their own health. Providers should be aware that family-centered care is often congruent with the cultural ideals and practices of Blacks/African Americans, Latinos, American Indians/Alaska Natives (AI/ANs), and Asian Americans/Pacific Islanders (AA/PIs). Family ties are important among these groups, and family members of HIV-infected youths from these groups are often integral parts of their health care process--and they are often reluctant to accept diminished roles in that process.
Among many AA/PIs, the family unit is considered to be more important than the individual members.3 In addition, filial piety (reverent respect toward parents and grandparents) is a highly regarded concept. According to these beliefs and values, individual needs and well-being are secondary to those of the family as a whole. Respect for the family (particularly for one's parents) is inculcated in children from a very early age and is reinforced throughout their education.4
Depending on the family's cultural perspective on health care, when young HIV-infected patients transition, it may be important to determine ways in which the family can remain involved. In some instances, it may be important to slowly decrease the level of family involvement while maintaining the family's importance in the young person's life. If a young patient and his or her family members are not properly prepared for these and other transition issues, the patient's health could suffer. A strong provider-patient-family relationship is invaluable at this time. For Black/African American families, this well-established relationship will be extremely important during the transitioning process. At this point in care, it is very likely that the family has established a trusting relationship with the current healthcare provider. Indeed, the provider may in some ways be a part of the family. The provider may be one of the few people, if not the only person, who knows the family is living with HIV infection. Because of the Black/African American community's experience with racism and discrimination in the health care system, Blacks/African Americans may be reluctant to trust another provider. Adopting a multisystems approach can help to unearth and address family concerns. Providers may want to coordinate meetings and discussions that include the individual patient, the family, the current provider/team, and the new provider/team. Eventually, the family should be supported to take the lead in requesting meetings of the appropriate people as needed to facilitate transitioning. This will help to build bridges from one health care team to the next.
Notably, many HIV-infected youth are without family and must cope with their illness alone. Providers should assess how much family support a child really has. If there is little or no family support, the patient will need assistance developing these coping skills alone. This may require extensive support from the clinician as many of these youth may be at a disadvantage because of the social and cognitive delays resulting from their disease.
The demanding nature of managing a serious chronic illness often becomes the organizing principle of a family's collective life.5 Terms such as "disrupting," "distracting," and "interfering" are commonly used by families to describe the impact of HIV on their lives. The belief of AA/PIs that the needs of an individual are less important than those of the family can have a serious impact on HIV care. An individual may fail to seek and adhere to treatment or decline to accept social services if such actions would cause worry and concern to the family, damage the family's reputation, or threaten the family structure.467
The burdens of complex medication regimens and multiple medical appointments tend to dominate the daily schedules for HIV-infected parents and their HIV-infected youth. Episodes of wellness and illness in both parent and child are often the norm with families affected by HIV, and these cycles contribute to ongoing stress. If families are also coping with survival or social issues such as poverty, homelessness, or discrimination, HIV may not be in the forefront for them. Indeed, these issues may interfere with their HIV care. Recognizing the importance of cultural and social issues as well as the complexity of negotiating chronic illness and formulating a plan to address them is a critical factor for facilitating the transition process.
Making Transitioning a Process
How Models of Care Affect Transitioning
Several developmental milestones are normally achieved during adolescence. AI/ANs and people of African descent--whether born on the continent of Africa or in the Diaspora--have rite-of-passage rituals during adolescence. This is seen as the period during which youth are prepared to assume adult responsibility. Their education and preparation during this time is seen as vital to fulfilling their unique purpose and to sustaining the community. Physical development in teens is highlighted by alterations in weight, height, and body dimensions, accompanied by hormonal changes that influence mood swings and a stimulation of their sexual desire. Their social development is punctuated by evolving relationships with teens of the same or opposite sex; pressure to conform to the appearance, behavior, and attitudes of peers; and the need to be accepted within their social group. In their emotional development, conflict reigns as they challenge rules and values as a means to establish
their own identity. Their academic and career interests become focused as they concentrate on immediate and future employment and educational goals.
For many chronically ill adolescents, the achievement of these milestones is delayed or interrupted by the effects of their health condition. Complex and demanding disease management protocols often interfere with establishing independence. As the adolescent experiences difficulty adhering to treatment regimens, relationships with guardians and providers become hostile, and for many, career goals are diminished.
Difficulty adjusting to normal body changes is exacerbated by the physical manifestations of their HIV infection. Adolescents with HIV disease may experience disfiguring changes in skin pigmentation, disease-related hair loss, delayed sexual maturation, small stature, and medication-associated fat malformations. Hence, HIV treatment events frequently lead to marked episodes of sadness, grief, and anger. Adolescents' physical appearance, level of maturity, and social skills contribute to their social desirability. Social acceptance versus social isolation, therefore, becomes an overarching concern. Having fewer opportunities to become part of a social peer group interferes with the process of seeking and exchanging information about sex, sexual relationships, academic performance and related concerns, and most importantly, how to confront and resolve conflicts with peers.
Young people with HIV receive care in different types of settings. Some of these settings are tailored to accommodate the limitations of their developmental delays and some are designed to serve independent adults. It is important for providers to understand that, from the perspective of young patients, their transition may involve not only new providers but also a vastly different approach to health care.
Making Transitioning a Process
Developmental, Transitioning, and Adolescent Models of Care
|Family Centered||Patient Centered|
|Health Maintenance||Disease Management|
|Developmental Focus||Progressive Decline Focus|
|Prescriptive (responsible for)||Collaborative (responsible to)|
|Patient transitions from a pediatric specialist to a pediatric/adult specialist to an adult provider||Patient moves from pediatrics (birth-14) to an adolescent program (15-24) to an adult program (>24 years)||The family general practitioner is the patient's care coordinator, and specialist(s) serves as consultant||Patient moves from pediatric care to adolescent care to adult care within the same environment, where clinical services remain constant|
As bridges between pediatric and adult models of care, adolescent programs strive to:
- Shift health care responsibility from the parent and provider to the youth
- Promote growth, self-expression, and personal decision-making
- Provide planned, purposeful transition interventions
- Move clients with chronic illnesses from child-centered to adult-centered health care systems
Adolescents are members of their families as well as their peer systems; they are also vital participants within the health care, community, and education systems. Negotiating these systems requires skills that may become impaired as a result of the effects of stress, illness, and other psychosocial factors factors such as parental lack of familiarity with the health care system due to recent migration or linguistic sensitivity from clinicians. Success or failure in transitioning to adult health care when youth approach age 21 or 24 hinges on mastering or failing to master central life skills. These life skills include the ability to access and negotiate medical and case management systems, develop a knowledge of self-care, and acquire the resources for pursuing additional education.
Making Transitioning a Process
Successful Approaches to Transitioning
Multiple factors influence the timing of a patient's transition, including departmental policies at various health care facilities and the patient's own health status. Many pediatric emergency rooms and pediatric intensive care units will not admit youth over the age of 18, so these adolescents are required to transition to adult services. When chronic illness affects a young person's cognitive and developmental functioning, transitioning is usually delayed, as it benefits these patients and their families to remain with pediatric or adolescent programs through age 24.
As soon as you feel it appropriate, explain the transitioning process to youth and their families, so that thoughts, feelings, fears, and potential barriers can be addressed before the patient changes care settings.
The following approaches can improve the likelihood of a successful transition for patients aging into more mature care settings: 8
- Plan a meeting with the patient, his or her family members, and the patient's other health care providers to collaboratively develop a transition plan that includes skills-acquisition screens, service referrals, and the emotional preparation needed for a successful transition. From a cultural perspective, it may be important to assess how much independence the family caregivers believe the adolescent can handle. Ask what kinds of responsibilities the young persons handle on their own. Are they responsible for their medication? Do they arrange transportation to their medical appointments? Do they attend medical appointments on their own? Do they see the medical caregiver alone while one or more members of their family wait for them?
- In advance of the patient's transition, develop a care plan but remain flexible. Available medical services, patient needs, and matters pertaining to insurance coverage all can change by the time a patient actually transitions, so you may have to adjust your plan to ensure that all service needs will be met, including social and spiritual support, concrete service needs (eg, housing, nutrition, transportation), educational services, and developmental intervention.
- Involve adolescent patients when developing their care plans, as engaging them in the process fosters independence and creative problem-solving skills.
- If possible, select an adult care setting that offers multidisciplinary support similar to the support provided by the pediatric or adolescent program the patient is leaving. Moving into this type of medical setting can facilitate the changeover from a supportive care program to one that emphasizes more independence.
- Ease the patient into change with a stepped transition, slowly transferring to successive adult services such as pharmacy, case management, or gynecology before switching the patient to an adult primary care provider. Providers should be aware, however, that many insurance plans require a patient's care to be delivered in one setting or another (eg, no reimbursement for services rendered at an "old" clinic once enrolled in a "new" clinic).
- Advocate the notion that the transition is a very special rite of passage.
Valuing Cultural Competence
- Culturally competent services require that health care providers assess their clients' beliefs or practices. This helps providers anticipate how to overcome potential barriers to effective health care. Culturally responsive health care methods can prevent misdiagnosis caused by misunderstandings, improve outcomes, and increase client and provider satisfaction.4 During the transition period, when sensitivities may be increased, it is important that providers make every effort to facilitate communication and collaboration with patients and their families.
- The provider who is designated to assist the family members in the transition process should be very familiar with them, their language, and their cultural needs. This person may be a member of the existing team or someone who has worked very closely with the family.
- Transitioning to greater levels of independence in health care may be viewed differently by patients, providers, and families. American Indian/Alaska Native (AI/AN) families may expect that they will remain a constant partner in the health care decisions of a young adult family member based on cultural values of relationship. Be sure to check in with families of pediatric patients as you prepare to transition them to adolescent or adult services. The change from family-centered care to individually focused care will likely require some discussion.
- In many Black/African American and Latino families, older family members have assumed care of their adult children or grandchildren. These older family members are often living with chronic illnesses such as hypertension or diabetes. In some cases, the medical team may have been like a family member, providing additional social support. In these instances, it is important to help adolescents establish a network as they transition from pediatric care.
- For AI/AN families, transferring responsibility for care to an adolescent may need to occur in steps and may require additional time to be carried out effectively.
- Good listening skills are important during this transition period. Providers must be sensitive to fears, beliefs, and values that are influencing family and patient decisions. AI/AN patients, in general, have a more positive response to an emotionally receptive provider who has good listening skills.
- Practice the LEARN model presented in the introductory module in order to better understand the role of the family's culture, if any, in the treatment of the youngster with HIV. The LEARN model9 encourages providers to:
- Listen to the patient's explanation of the problem.
- Explain your perspective on the problem.
- Acknowledge differences between the provider and patient perspective.
- Recommend treatment to the patient.
- Negotiate treatment by collaborating with the patient to find an intervention that addresses their concerns and those of the provider.
- Young women living with HIV infection have special gynecological needs. If their pediatric clinic does not have gynecologic care, they may begin their relationship with an adolescent clinic by accessing these services there. Thus, they may be receiving treatment at two clinical sites. This arrangement can be utilized to facilitate their movement from one to the other.
Special Considerations: Pediatric to Adolescent Care Transitions
Transitioning from Pediatric to Adolescent Care
As children living with perinatally acquired HIV survive into adolescence, medical providers, youth, their families, and various systems of care face several challenges in properly transitioning children from pediatric to adolescent care systems. Because transition to an adolescent program is not always possible, pediatric providers should anticipate their pediatric patients' transition to adolescence and how they will provide for an adolescent patient's needs until they are ready to transition into an adult setting. Among the issues that are important to address when patients transition from pediatric to adolescent or adult care are disclosure of HIV infection to the patient, the family's health, the developmental challenges of adolescence, parents' fears of behaviorally infected HIV patients, patients' readiness for higher education and their confidentiality concerns, and perhaps most importantly, addressing the patient's emerging sexuality.
Special Considerations: Pediatric to Adolescent Care Transitions
Disclosure of HIV Infection
The thought of disclosing to a child that he or she has a serious illness often provokes extreme anxiety in parents or caregivers. Many believe that children or adolescents who are told that they are HIV infected will become depressed and lose interest in life.10 As a result, a veil of secrecy around a parent's or a child's HIV infection is common. Unfortunately, this secrecy often creates agitation, anxiety, depression, and behavioral problems, as most adolescents are very perceptive and pick up clues that something is wrong even when no one in the family acknowledges the cause of stress.
Young people have a right to know if they are HIV infected. Providers should assess a young patient's ability to integrate and interpret information about HIV infection. If this information is appropriately presented and the patient has access to psychosocial support, most young people can cope with the news that they are HIV infected. Furthermore, many clinicians have found that, when children and adolescents understand what is happening to their bodies, they are more likely to participate in their treatment.
HIV disclosure to youth should occur sooner rather than later. But, in some cultures, such as among Blacks/African Americans, it is considered inappropriate to discuss "adult" topics with children. Some families may feel that a child or adolescent is too young to "handle" the news that they have a serious, chronic disease. Some families may even fear that their child may give up on living if they are told of their diagnosis. Disease-related stigma and parental guilt are significant issues to address when preparing parents for disclosure counseling. Providers should be aware that reluctance to inform children that they are HIV infected is often related to fears among parents or caregivers that the child may:
- Blame the mother for being the source of infection
- Not be cognitively prepared to understand the information
- Tell others outside the immediate family
Special Considerations: Pediatric to Adolescent Care Transitions
The Family's Health
The health status of the adolescent's parents or caregivers can deter or facilitate health maintenance in the adolescent who has yet to achieve independence. Many parents with HIV disease may be unwell and may not engage in good health practices themselves. Diabetes, hypertension, and heart disease are common chronic ailments among some racial/ethnic groups, such as Blacks/African Americans. Depending upon the parents' or the caregivers' access to quality health care, they may not have had good health education or nutritional counseling. Their own health beliefs and disabilities can affect their ability to facilitate their child's health. Examples include not purchasing their child's medications or not monitoring their child's medication adherence, not keeping health appointments, and not monitoring their child's health status. Notably, many Asian Americans/Pacific Islanders define illness by the presence of symptoms, and feel they are not ill if no significant symptoms are manifest. In many cases, they seek medical assistance only when the symptoms become too severe to tolerate. 11 In such cases, a self-help model of care can help prepare an adolescent for greater independence.
Special Considerations: Pediatric to Adolescent Care Transitions
Developmental Challenges of Adolescence
- Independence is an appropriate trait for adolescents, but it can become dangerous if a patient rebels against treatment. It is normal for adolescents to want control over their own medical treatment. The provider should offer the adolescent choices from a short list of possible treatment options, all of which can provide the individual with the best possible outcomes. Negotiating treatment strategies will ensure that the plan best suits the patient and can give the patient a sense of empowerment.
- Parents and caregivers may be hesitant to place responsibility for managing their child's HIV care into the child's hands because of fear that the child will not adhere to treatment. Many parents and caregivers devote a lot of time, energy, and personal initiative in maintaining their children's good health. Often, it is difficult for them to relinquish control over a teenager's health management after having established successful long-term care routines. It is helpful for the provider to assist the caregivers in transferring control of certain aspects of the adolescents' health care routine over time, while monitoring the youth's ability to manage those aspects of self-care successfully. Trust and confidence in their ability to care for themselves can be measured only by successes and failures over time.
- Adolescents may be influenced by the health beliefs of their family members. In instances where there is family concern that medications or other interventions are more harmful than beneficial, the young person may feel torn between the provider's advice and their family's concerns. Some of these concerns arise from historical experiences involving discrimination and mistreatment by the health care system, such as the Tuskegee Experiment. Thus, the importance of honesty and building trust in the provider-patient-family relationship cannot be overstated.
Special Considerations: Pediatric to Adolescent Care Transitions
Parents' Fear of Behaviorally Infected HIV Patients
- Caregivers for perinatally infected youth are often afraid that their patients will receive "bad influences" from associating in clinic settings with older, behaviorally infected adolescents. As with any parental concern, it is important to understand and address these fears honestly, in order to maintain an alliance with both the family and the adolescent. Often, this fear is based on the parents' concerns about their own child's sexuality and growing independence. The parents should be encouraged to share their values and concerns with both the providers and their child.
Special Considerations: Pediatric to Adolescent Care Transitions
- The issue of confidentiality is often a significant barrier to health care for adolescents. Pediatric providers should start preparing caregivers early by informing them of the adolescent's right to privacy, and ascertain from the adolescent (privately) how much and what information he or she wants the provider to share with the caregiver, if any.
Special Considerations: Pediatric to Adolescent Care Transitions
Clinicians may not be comfortable discussing sexual issues with adolescents. However, providers who are caring for adolescents must be comfortable addressing these issues so that the care team can adequately respond to the patients' concerns, feelings, and problems in a constructive, nonjudgmental fashion (see Psychosocial Issues module for tips on addressing sexuality with youth). 12 If adolescents sense that a provider is not comfortable discussing sexual issues, they may withhold information that can compromise their care and put them at risk of transmitting HIV to others. It is important for providers to strive to establish an environment in which adolescents feel safe and eventually comfortable discussing sexuality so that it will be easier to assist them in making healthy choices. In the best-case scenario, the health care team also works with family members to give anticipatory guidance regarding the young person's sexual development.
Cultural beliefs, values, and practices may influence family communication about sexuality. For example, in some cultures, premarital sex is strictly forbidden. Thus, young people may have difficulty talking honestly about their sex lives with family members. In the clinical setting, patients will rely on providers to ensure that they have the opportunity to discuss sensitive issues such as sex privately. In many cultures, sex and related issues are not considered proper subjects for discussion. For some youth, especially young women, attempting to negotiate safer sex many be considered promiscuous.3
Disclosing HIV Status to Sex Partners
Several states have laws governing the self-disclosure of one's HIV status to a sexual partner. All youth must be informed by the health care provider of the moral, ethical, and legal implications of participating in unprotected sexual activities with a partner who is unaware of one's HIV-positive status. Among youth, self-disclosure to a sexual partner is a more complex process than disclosure among the general population because adolescent sexual relationships may be of short duration and the partner may not keep confidentiality. Adolescents should receive guidance and support from the health care team to assist with this process.
Formation of Sexual Identity with Periods of Experimentation with Both Genders
Cognitive and social development during adolescence is a complex process characterized by acquiring a sense of self apart from the family, a sexual identity, the capacity for intimacy, and the ability to be self-sufficient. For those adolescents who develop a gay orientation in a social culture based on heterosexuality, the transition during adolescence is expanded and expressed somewhat differently during the stage of forming a sexual identity.13 Cultural beliefs and practices can strongly influence what adolescents perceive is "appropriate" sexual behavior. If young persons receive the message that their feelings of attraction are wrong or inappropriate, they may face some emotional difficulties in developing their sexuality. This may be particularly pronounced in communities where religious beliefs affirm heterosexuality while disaffirming homosexuality. Members of racial/ethnic minority groups who are gay may internalize the stigma of homosexuality, developing low self-esteem and even self-hatred. The stigma is greater for these individuals who are living with HIV. Internalizing such negative feelings causes a substantial number of gay individuals to feel unworthy of receiving help.144
Luke was relocated to his aunt's house in Seattle following his discharge from the hospital shortly after birth. His aunt and uncle are Native American but do not associate with other Native Americans in the city. His mother's parental rights had been partially terminated by tribal court and his father's identity was unknown. At 18 months of age, Luke's new pediatrician in Seattle confirmed that he was HIV infected. Luke's aunt and her family had embraced him into their household and learned how to take care of his medical needs. The aunt's family was very concerned about the biological mother's biopsychosocial history and how it might affect Luke. She often wondered whether Luke would develop addictions himself, whether his personality would mirror his mother's, and whether he would die prematurely from AIDS. The extended family in Montana and the aunt's family in Seattle decided early on not to inform Luke that his biological mother was alive.
Luke's aunt and her family describe a well-adjusted child who has many non-Native American friends and, other than normal family conflicts, maintains a good relationship with his cousins. The aunt and uncle are somewhat overprotective of Luke. Before his 13th birthday, Luke was unaware that his mom was alive and living in Canada. The aunt and uncle also delayed disclosure of his HIV status, as they felt he was not emotionally ready to be told.
Unfortunately, a week before entering 9th grade in a new school, a disgruntled employee at his uncle's hardware store told him that his mother was alive and that he had HIV. Initially, Luke appeared to be more negatively impacted by the news that his mom was alive than by the fact that he was HIV infected. His curiosity about his birth mother created conflict for his aunt and uncle, and Luke gradually began to act out and develop behavior problems that were difficult for them to manage.
Luke's developmental history was normal, as all of his childhood milestones were achieved on time. Luke describes having an average childhood, reporting to be in relatively good health most of his life. He has a pediatrician with whom he has a good relationship and genuinely likes. Until recently, Luke was compliant with his HIV treatment regimen and rarely missed a medical appointment. He was cooperative and friendly, and related well to the members of the clinic team.
Despite an offer years earlier from a nurse to assist the family with the HIV disclosure process, the family refused to tell Luke. After learning of his positive HIV status, he became very angry about not being told at a younger age and now distrusts his aunt and uncle, suspecting that they may be harboring other secrets. As a result, Luke has become uncooperative and belligerent, cuts classes at school, and recently has affected a dramatic "gang" look in his dress. His aunt and uncle are applying strong disciplinary measures in reaction to Luke's increasing acting-out behaviors, which makes Luke more rebellious.
Because Luke's aunt insists on accompanying him into the examination room at all of his visits, he consistently denies being sexually active. However, in his group session, he disclosed that he recently became sexually active with a 17-year-old Native American woman, who has had problems with the legal system and has dropped out of school. Luke reluctantly reported to his social worker that his girlfriend is unaware of his diagnosis.
Currently, Luke's pediatrician and the care team are at a loss in managing his HIV care. During the past year, his immune status has deteriorated. His viral load is consistently >750,000 copies/mL and his CD4 count dropped from 650 to 199 cells/µL. Luke readily admits not taking his medications, and is currently refusing to take them. He sporadically attends the weekly support group for disclosed youth, but reports difficulty relating to the group members because they are not Native American, and he does not like participating in the activities. He has not bonded with his new social worker, nor has he established an attachment with several of the new staff members.
Luke was introduced to many stressors in the past year and he is coping poorly with the multiple changes occurring in his life. He is in 9th grade at a new public high school where he does not have many friends, and he is cutting classes frequently. In addition, he recently was told that his mom is alive and that he has HIV. Members of the pediatric team feel that they are ineffective in their interventions with Luke and that his "scary" appearance makes other patients in the waiting room uneasy. They decided that he would be a better fit socially with the patients they care for in the behaviorally acquired HIV clinic, where Luke would be transferred in time for his next scheduled visit. Luke and his aunt and uncle reluctantly agreed to this transfer but said they were not ready to leave the providers they have had for the past 15 years.
1. What psychosocial issues should Luke's pediatrician either address before his transition or make known to the new provider?
- The issues at hand for Luke are very complex: Processing the information that his biological mother is alive and that he has HIV is extremely difficult for him. In a time of transition, such issues can pose significant barriers to care for adolescents. Luke's providers should determine who can he share this information with, and whether his family members would be willing to enter therapy together in order to rebuild trust and ensure that Luke remains in care after he leaves the pediatric setting.
2. What could the pediatric team have done differently to facilitate disclosure to Luke about his HIV infection?
- The pediatrician and clinic staff should have advised the aunt and uncle several times over the years that informing Luke of his HIV status would be increasingly difficult for him to accept as he became older. A nurse mentioned that to the family on one occasion and they refused, but providers should persevere and draw upon the resources of the entire care team to convince parents or caregivers of the importance of disclosing to a child, and assistance in delivering the news should be offered in case it is needed.
3. Does it seem likely that Luke will engage into care at the adolescent clinic?
- To be engaged in care, Luke will need to quickly develop a relationship with his new medical provider in the adolescent care system. Depending on the staff there, that may or may not happen. Ideally, Luke would have been acclimated gradually into the adolescent setting by his pediatric team. At this point, he seems resentful at being "kicked out" of pediatrics. The situation could have been avoided if there had been a plan in place to prepare Luke and his aunt and uncle for the transition.
Special Considerations: Adolescent to Adult Care Transitions
Transitioning from Adolescent to Adult Care
The adolescent developmental tasks of asserting independence from family, formulating values, planning for the future, and developing a healthy self-esteem are difficult to achieve when an adolescent must deal with the additional stressors of living with HIV. The following issues should be considered when a young adult transitions into an adult HIV care setting:
- Many youth lose public or private health care coverage when they reach 18 years of age and must apply for benefits independently from their families.
Style of care
Adult providers may seem more distant and the adult care environment more formal than the adolescent or pediatric clinics these patients will be leaving.
Many adolescent systems of HIV care provide coordinated, comprehensive support that includes nursing, psychosocial, mental health, case management, and nutritional services delivered by a cohesive staff in one setting. Provision of adult health services may be available only in a location that lacks an infrastructure to provide the comprehensive services the youth have been accustomed to in the past. This fragmentation can result in an uneven health care experience in such critical areas as cultural competence.
Sexual health and reproduction
- We live in a culture where pregnancy/reproduction is highly valued and considered natural. Thus, it is very likely that young men and women living with HIV will want to be parents. Providers should not assume that all HIV-infected patients want to avoid pregnancy, and should counsel patients who want to become parents about the safest ways to conceive, deliver, and care for their children.
- Within Black/African American communities, children and family are highly valued, so many youth from these cultures may want to become parents. Some may have family members who are supportive and willing to help care for their child. The extended family network within the Black/African American community64 may provide the necessary support system for a young person living with HIV who becomes a parent.
- In most AA/PI cultures, children have obligations to enter into heterosexual marriage and produce children, 6162 so that a son can continue the family name.63
Access and participation in research studies
- In youth less than 18 years of age, timing of their "legal" independence (eg, pregnancy, reaching age 18, marriage) is a factor for consideration when enrolling in research opportunities.
Although young persons may be considered adults in a legal sense, their life experiences, guidance received from parents and other adults, and the pressures of coping with a stigmatized, serious medical condition may leave them without sufficient social skills to independently and successfully manage their transition to new adult care providers. Child rearing practices can affect a patient's level of maturity. In some families, chronically ill children may be less mature because their caregivers are more protective of them.
Marc's family came from Haiti more than 25 years ago, hoping to make a better life for themselves. After their first year in the United States, Marc's mother became pregnant with him. When Marc was 10 years old, his mother was hospitalized. After a prolonged illness, she died of AIDS-related complications. During her hospitalization, the entire family was offered HIV testing. Marc and his siblings were found to be HIV negative, but his father was diagnosed with HIV. Marc's father is not engaged in HIV care because he does not believe that his diagnosis is correct. He told Marc, "All physicians say Haitian immigrants have AIDS."
Marc is described as having been a shy, polite boy growing up. With the onset of puberty, he had become more socially outgoing and somewhat rebellious at home. His medical history is benign, reflecting relatively good health all his life. Marc has a close relationship with his siblings and enjoys the designation of "family favorite." They are a religious family and attend services at a Pentecostal church in their community a couple of times a week. Marc was always a good student and dreamed of attending veterinary school when he graduated from high school. Marc enjoys being around animals and would like to become a veterinary assistant.
When Marc turned 16 he secretly initiated his first sexual relationship with another 16-year-old Haitian boy at his church. On many occasions, Marc had unprotected receptive anal intercourse with his boyfriend. The relationship ended when the boy and his family moved back to Haiti. Marc subsequently had a series of similar short-term relationships with young men, unbeknownst to his family or friends.
When Marc was 17, he attended a health fair in a neighboring community held in conjunction with an arts and crafts show. He and several of his friends were screened for cholesterol level, blood pressure, and HIV infection. Two weeks later, he was notified to return for his test results, whereupon Marc was told that he was HIV infected. Marc was devastated when he was told of his diagnosis. He shared the news with his sister and no one else. The Department of Health immediately referred him to an HIV adolescent medicine clinic following his HIV posttest counseling appointment.
Marc receives health care services on an irregular basis (at least semiannually). He is on antiretroviral therapy and reports taking his medication as prescribed at least 90% of the time. His CD4 counts have ranged from 300 to 890 cells/µL, and his RNA PCR viral load ranges from undetectable levels to <5,000 copies/mL. His sister usually attends his clinic visits with him because he says that she helps him to remember what the staff advises him to do. He is completing his second year in a veterinary program, and works as a part-time assistant in a veterinary practice. This heavy schedule, and his sister's busy schedule with her children, explains his partial compliance with his health care visits.
In the past few years, the program social worker and nurse have administered annual "transitioning" screens that assess Marc's knowledge base and skills acquisitions in several areas; however, Marc was unaware of the reason for these assessments.
At this visit, Marc becomes uncommunicative when the nurse tells him that he will soon have to leave the adolescent clinic. Because Marc has missed the past few visits, his physician has not had a serious discussion with him about his need to be discharged from the Department of Pediatrics. Over the years, he has been told that he can't visit the clinic forever, but Marc didn't think they were serious because he thought many of the patients at the clinic seemed his age or even older. Today, he is introduced to a new provider, an adult medicine physician who attends the adolescent clinic twice a month to begin transitional care of the patients preparing to leave the adolescent clinic.
1. What could the social worker have done to better prepare Marc for his transition into adult care?
- In addition to talking to Marc about the reason for assessing his medical knowledge of disease management, his self-care skills, his preventive health behaviors, and his ability to access community resources, the medical team could also have prepared him for this event gradually, by teaching him how to fill his own prescriptions, make his own follow-up medical appointments, and be more independent and proactive in his health decision-making processes.
2. What strategies could help the pediatric care team assist Marc's transition to the adult clinic?
- Although the adolescent nurse and social worker should not formally assist Marc with his needs while he is in transition, they should refer him to the appropriate resources and monitor his activities informally until he has demonstrated that he has achieved the capacity to function independently in the adult clinical setting. Ideally, Marc will continue to see his new adult medical provider in the adolescent clinic for 3 more medical visits, before he is physically transferred to the site of the adult medical clinic.
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