|
Article Excerpt
Abstract
Pediatric Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) effect the entire family, and a broad range of family configurations are involved in caring for children that are impacted. Learning that a child is HIV-positive is a traumatic event, and disclosing this to the child, family members and significant others can be difficult. Families must also cope with a wide range of psychosocial concerns that include the stress of dealing with chronic illness, anticipatory loss, guilt about transmission to loved ones, social isolation, stigma, and discrimination. In addition to the physical trauma and psychological stigma of HIV/AID, popular belief has it that AIDS is invariably fatal. Families must be assisted by caregivers, and others in the mental health profession, to understand the developmental and psychological needs of their children. With time, family members generally overcome their own feelings of despair and provide the child with love and support. This paper discusses the issues that families confront when a child is infected with HIV. This paper also includes an overview of the adaptations that are needed when a child has HIV infection, and discusses coping strategies for problems associated with having a child with HIV. As such, an extensive bibliography ought to be helpful to college students and health instructors.
**********
Infection with Human Immunodeficiency Virus (HIV) is now known to be a disease that effects the entire family (Grosz & Hopkins, 1992) and causes a painful silence due to the uncertainties that accompany this diagnosis (Rigoglioso, 1994). The child with HIV is sometimes the index case of the family that leads to the identification of one or both infected parents, as well as other siblings that were previously believed to be healthy. Uninfected brothers and sisters are left to witness the deterioration and destruction of the family. Indeed, few diseases of childhood are known to target the entire family with such force (Abrams & Nicholas, 1990). An important aspect of this infection is its emotional impact on the child and family. How the family handles the day-to-day stressors, concerns, and needs greatly impact the outcome of the child (Miller, 1994; Saddler, Hillman, & Benjamin, 1993; Snowdon, Cameron, & Dunham, 1994). This paper focuses on the issues that families must face when confronted with having a child with HIV infection, and also reviews family reactions and parenting issues related to living with children with HIV, overviews coping strategies that are needed when a child has HIV infection, and discuses the ways of learning to cope with the problems associated with having a child with HIV.
Acquired Immunodeficiency Syndrome (AIDS) is not a single disease but a syndrome that may involve several pathological states, and is transmitted in various ways. This syndrome affects persons with diverse life histories and identities. HIV is the virus that leads to AIDS, which attacks and eventually destroys certain white blood cells, that are a part of the body's immune system and are needed for the body to rid itself of infections. The immune system makes antibodies to combat the HIV virus, and the presence of these antibodies are first detected, and may be measured, in the blood. The presence of these antibodies leads to a diagnosis of "HIV-positive". However, HIV-positive persons may remain healthy for a long period of time, even for many years. In the later stages of the disease comes the diagnosis of AIDS, and it occurs when so many white blood cells have been destroyed that the immune system cannot do its job well (American Psychiatric Association [APA], 2002; Abrams & Nicholas, 1990). Persons with AIDS develop opportunistic infections and malignancies from both usual and unusual organisms.
According to Gortner (1997), a child can become infected with HIV in two ways. First, children are infected due to perinatal transmission. Mothers that are HIV positive may pass the virus to their baby during pregnancy or birth, or from breast milk containing the virus. High-risk behavior is the second way by which children and adolescents contract HIV. Like adults, children can become HIV infected through contact with blood and other bodily fluids like semen, through the use of contaminated needles, and by unprotected sex (Gortner, 1997).
The Impact of HIV and AIDS on the Life Cycle
HIV and AIDS have a profound impact on the life cycle of persons infected. In understanding the lifecycle of persons with HIV and AIDS, it is first necessary to understand the lifecycle of persons who are not impacted by these diseases. The lifecycle of a mainstream western family is analogous to the developmental stages of an individual. Carter and McGoldrick (1980) propose a six-stage model of the family lifecycle, which is useful for understanding the evolution of a family. Modifications must be made, however, when applying this model to nontraditional family units, to families that have children later in life, and to families who have a child with disabilities and chronic illness (Gellerstedt & leRoux, 1995). In the first stage of the family life cycle, an unattached young adult separated from his or her family of origin, moves out of the house and gets a job. Relationships with parents change from that of child-to-adult to adult-to-adult. In the second stage, this individual develops an intimate relationship with another person and they marry (or live together), joining together two families. The couple commits itself to the new nuclear family. In the third stage, the couple has children, and the relationship adjusts to make space, both emotionally and physically, for its new members. The relationships with families of origin are adjusted to accommodate the new role of grandparents. In the fourth stage, the couple's children become adolescents and begin to separate and individuate. In the fifth stage, this generation of children moves out, and the marital/couple relationship must readjust once again having only two people in the home. At some point the parents also may have to deal with the ill health or dependency of their parents, reversing the original adult-child role. Finally, in the sixth stage of the life cycle model, the parents, in their older years, engage in a review of their lives and integrate their successes and failures (Trachenberg & Batshaw, 1997).
For all families, the adjustments and realignments each member must make during transition from one stage of the life cycle to the next are normally stressful. When a family has a child with HIV infection, the stress is amplified. In such a case, on each occasion that a life cycle change should occur and does not, family members may again feel the sorrow they experienced when the diagnosis was first made (Tunali & Power, 1992). Coping with HIV infection requires strong social and family support (Florence, Lutzen, & Alexius, 1994). This support may be especially difficult to obtain in families where multiple family members are infected and try to cope with their own responses to illness. When multiple family members are infected, this support normally found within the family may need to be located in other systems in the community. Family members may participate in the same social networks that often lead to the same risk behaviors that resulted in a family member becoming HIV-positive. Ties to these networks may lead...
|
