http://www.hivcareforyouth.org/adol?page=md-module&mod=01-03-05

Key Cultural & Psychosocial Challenges of HIV-Infected Youth

Addressing Difficult Issues

It is important for providers to help adolescents and their parents or guardians deal with topics that are often difficult to address. Sex and death are often hard for families to discuss, yet the way these and other difficult issues are addressed can help determine whether an adolescent's treatment succeeds or fails. The LEARN model (see Toolbox) may offer some guidelines for discussion of difficult topics and implementing interventions as necessary.

Talking about Sex

Providers should talk openly to adolescents about their peer relationships, sexuality, and sexual practices and explore their underlying fears of stigmatization and rejection in order to facilitate open discussion and behavior change. 21 The Prevention with Positives module provides greater insight into how to address sexual risk reduction with adolescent patients.

  • As many HIV-infected adolescents and young adults age, sexual experimentation will occur, sometimes leading to pregnancy. Thus, health care providers should periodically review safer sexual behaviors with adolescent patients and make barrier protection available to them.22
  • After assessing whether it is safe to do so, providers should encourage adolescents to have open and honest conversations with their parents or members of their extended family about their sexuality and sexual practices, as it can help them feel less alone and more supported. Be aware that parents may have sexual taboos or be hesitant to talk with youth about sex. Their cultural value may be that sex takes place in a marriage. In this case, providers will have to help youth and parents find comfortable, common ground for discussing sexual practice.
  • Help adolescents think about intimacy beyond sexual contact. We live in a culture where sexual intercourse is openly emphasized. In an effort to help adolescents develop healthy, lasting relationships, it is important to encourage them to develop a strong sense of self-worth and to find value in their intimate relationships that goes beyond sexual contact.

Talking about Dying

Many adolescents want to share in decision making about end-of-life care, and they want to have these conversations before they are hospitalized or dying. 23 Many adolescents do not disclose their own preferences about end-of-life care to their family members in order to protect them. Others avoid the topic so their families will not know how ill they are feeling. 24 Consequently, many youth say what they think their family members or doctors want to hear.

Let patients know that you will inform them whenever you are concerned that their disease process is life threatening and that you are willing and ready to talk with them with or without their family about their end-of-life care.

Learn about any cultural practices related to death and dying. For example, among Blacks/African Americans, funerals are very important as a means of comforting the living and aiding the deceased's transition to "heaven" or a "better place."

Family Issues with Death

Similar to the diagnosis of other life-threatening illness, the family's response to the diagnosis of HIV/AIDS in a child can include shock, fear, guilt, disbelief, anger, and sadness. Families often describe a feeling of disorganization or being overpowered, and they often experience anticipatory grief reactions as they begin to mourn the loss of the hopes and dreams of the family's future together. Other concerns include the possible loss of social support, loss of a sense of physical well-being and invulnerability, and loss of employment or housing. Patients in advanced stages of illness should be reassured that they will receive palliative care and should be involved in decision making about whether to continue or stop treatment, last wishes, and whether they want to die at home or in a hospital/hospice.

Patient Issues with Death

A majority of perinatally infected children have lost a biological parent and sometimes a sibling as well. Children try to maintain the relationship with the parent they have lost. Developmental considerations (whether the child is able to understand the finality and irreversibility of death and their own risk of death), the manner in which the surviving parent or relative responds to the child, the availability of social support, and subsequent life circumstances can influence whether a child develops bereavement-related problems. 25 It is imperative that providers assess for complicated grief reactions. This includes understanding the quality of the relationship between the child and deceased parent, whether the parent arranged care for his or her children prior to death, communication around the time of death, and continuity in the child's or adolescent's life after the death of a parent.

References

  1. Lightfoot M, Rotheram-Borus MJ. Negotiating behavior change with HIV-positive adolescent girls. AIDS Patient Care STDS. 1998 May;12(5):395-401.
  2. Centers for Disease Control and Prevention. Pregnancy in perinatally HIV-infected adolescents and young adults--Puerto Rico, 2002. MMWR Morb Mortal Wkly Rep. 2003 Feb 28;52(8):149-51.
  3. Lyon ME, McCabe MA, Patel K, et al. What do adolescents want? An exploratory study regarding end-of-life decision-making. J Adolesc Health. 2004 Dec;35(6):529.e1-6.
  4. Lyon M, Pao M. When All Else Fails: End-of-Life Care for Adolescents. In: Lyon ME, D'Angelo LJ, eds. Teenagers, HIV, and AIDS: Insights from Youths Living with the Virus (Sex, Love, and Psychology). Westport, CT: Praeger; 2006:215-234.
  5. Silverman PR, Nickman S, Worden JW. Detachment Revisited: The Child's Reconstruction of a Dead Parent. In: Doka KJ, ed. Children Mourning. Washington: Hospice Foundation of America; 1995:131-148.