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.
- Rosen DS, Blum RW, et al. Society for Adolescent Medicine. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003 Oct;33(4):309-11.