Key Cultural & Psychosocial Challenges of HIV-Infected Youth

Culture, Family Dynamics, & HIV

Race and Ethnicity

It is important for providers to obtain a clear understanding of the family's cultural background and the factors that might influence responses to an HIV diagnosis or affect the disclosure of a diagnosis to a child.26 Among some cultural groups, certain issues are not discussed with younger members. Family secrets regarding substance abuse or secretive sexual behavior that can come to the surface when HIV is diagnosed may be topics that are off limits. Black/African American families may be hesitant to "air their dirty laundry" and want to maintain privacy.27 This is related to the historical experience of racism in White institutions and the need to be cautious because of the risk of mistreatment, referred to as "healthy cultural paranoia" by Grier and Cobbs.28 The stigma associated with HIV/AIDS may intensify a family's perceived need to be protective of its members. Providers will need to spend time building meaningful relationships with families. Honesty and genuineness in relationships with families will help to ease the tensions that may be present.

Providers may find that Latino families have a respect for the authority of a health care provider that aids the building of a strong partnership with families.29 This tendency to be more trusting of health care providers can help to engage the family. However, it is important to note that language can be either an important barrier or a valuable facilitator in building relationships with Latino families. Providers may need to be able to switch between Spanish and English or engage the collaboration of an interpreter. Often, people are more able to discuss emotion-laden topics in their first or dominant language.

The use of disease as a strategy for colonization, a history of unethical research practice, and underfunded reservation-based medical treatment have left many AI/AN people and communities distrustful of medical providers.30 Because the traditional extended family is the recognized center of AI/AN life, it is critical during the first medical contact for the health care provider to have the patient identify the persons who are considered to be family members. Family distrust can inadvertently become an issue if family members usually take on the responsibility of making treatment decisions and they are inadvertently ignored owing to a misunderstanding by the clinician. Without trust by the family, the patient may distrust both the clinician and the suggested medical treatment.

Although issues for Latino and Black/African American youth are addressed throughout this module, White-Anglo youth are the minority population in most HIV clinics. These youth often describe "standing out" and are concerned about not "fitting in" or being taken seriously because of their skin color and assumptions about their lifestyle.

Parental Guilt

A diagnosis of perinatally acquired HIV infection often brings to light previous family secrets, including parental HIV infection, paternity, history of parental sexual behavior, and substance abuse.31 Providers should know that a majority of perinatally infected children acquire the virus from their mothers and that the ensuing parental guilt about transmission distinguishes this disease from cancer and other life-threatening pediatric illnesses. Providers can help parents differentiate between cause and intent by helping parents understand and come to terms with concerns regarding their HIV infection and reminding them that it was not their intent to harm their child. This exercise can reduce guilt and allow emotional energy to be directed toward seeking treatment, living a healthy lifestyle, and practicing good parenting.

"Well Children"

Providers should be aware that "well" children in an HIV-affected household have tremendous and often neglected social, psychological, and legal needs. With no voice to represent them, these well or "affected" children are often silent victims of the HIV/AIDS pandemic.32 Many HIV-infected parents experience a series of preexisting and long-standing family disruptions even before the HIV diagnosis. Their children often suffer from significant anxieties about future losses (eg, who will care for them if their parents and siblings die) and concerns about their own health. It is the pervasive threat of death and the fear of being left alone that constitutes chronic trauma for child survivors of HIV infection.33 It is not uncommon for some of these youth to become parentified, a term used to describe children who are forced to take on adult responsibilities and roles before they are emotionally or developmentally able to manage these roles successfully.34 The greater the severity of the parents' illness, the more the children assume inappropriate adult role behaviors. Those who report more parental role behaviors also report more externalizing dysfunctional behaviors, including sexual behavior, alcohol and marijuana use, and conduct problems.35

In considering psychotherapeutic interventions for the well children in HIV-affected households, providers should:

• Assess for parentification
• Assist with respite child and parental care
• Assist with permanency planning and building legacies
• Increase social support networks
• Facilitate ongoing mental health services 36
• Address envy and rivalry that might arise when the HIV-infected child is receiving special medical care and parental attention 37

References

26. Mettler MA, Borden K, Lopez E, et al. Racial and ethnic patterns of disclosure to children with HIV. Paper presented at the Annual Convention of the American Psychological Association; August 1997; Chicago.
27. Boyd-Franklin N. Black Families in Therapy: Understanding the African American Experience; 2nd ed. New York: Guilford; 2003.
28. Grier W, Cobbs P. Black Rage. New York: Bantam; 1968.
29. Boyd-Franklin N. Therapy with African American Inner-City Families. In: Mikesell RH, Lusterman DD, McDaniel SH, eds. Integrating Family Therapy: Handbook of Family Psychology and Systems Theory. Washington: American Psychological Association; 1995:357-371.
30. Duran B, Walters KL. HIV/AIDS prevention in "Indian country": current practice, indigenist etiology models, and postcolonial approaches to change. AIDS Educ Prev. 2004 Jun;16(3):187-201.
31. Havens JF, Mellins CA, Ryan S. Child Psychiatry: Psychiatric Sequelae of HIV and AIDS. In: Sadock B, Sadock V, eds. Kaplan and Sadock's Comprehensive Textbook of Psychiatry, 8th Ed. Philadelphia: Lippincott Williams & Wilkins; 2005:3434.
32. Fair CD, Spencer E, Wiener L, et al. Healthy children in families with AIDS: epidemiological and psychosocial considerations. Child Adolesc Social Work J. 1995 Jun;12(3):165-182.
33. Mendelsohn A. Pervasive traumatic loss from AIDS in the life of a 4-year-old African boy. J Child Psychother. 1997;23:399-415.
34. Valleau MP, Bergner RM, Horton CB. Parentification and caretaker syndrome: An empirical investigation. Fam Ther. 1995 22(3):157-164.
35. Stein JA, Riedel M, Rotheram-Borus MJ. Parentification and its impact on adolescent children of parents with AIDS. Fam Process. 1999 Summer;38(2):193-208.
36. Wiener L, Havens J, Ng W. Psychosocial Problems in Pediatric HIV Infection. In: Shearer WT, Hanson IC, eds. Medical Management of AIDS in Children. Philadelphia: W.B. Saunders; 2003.
37. Fanos JH, Wiener L. Tomorrow's survivors: siblings of human immunodeficiency virus-infected children. J Dev Behav Pediatr. 1994 Jun;15(3 Suppl):S43-8.