An Overview of the Psychosocial Issues That Impact Family's Affected by HIV/AIDS
Lauriann Tomaszeski, Psy.D., Licensed Psychology Clinical Instructor, University of
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Introduction
The psychological and social sequela of HIV and AIDS infection is devastating to children, adolescents, women, and their families. HIV and AIDS is a chronic/terminal illness that forces individuals and their families to cope with an uncertain progression of disease, complicated medication regimes, and the grief related to the loss of health and possibly the loss of family members. Unlike other chronic/terminal illnesses HIV and AIDS infection is further complicated by the stigma related to the transmission of HIV infection (i.e., sexual activity and intravenous drug use). Due to disclosure fears and stigma associated with HIV and AIDS, many families isolate themselves from their extended family and communities to protect themselves and their children from maltreatment. Thus, they are cut off from valuable supports. In conjunction with coping with the psychological and emotional ramifications of being infected with or affected by HIV and AIDS, these individuals are forced to deal with a multitude of stressors with little support. These factors place these individuals and their family members at risk for mental health disorders (e.g., depression, post-traumatic stress disorder, and anxiety), developmental deficits, and behavioral problems (e.g., drug or alcohol use, school failure, inability to maintain a job, and criminal behavior). These issues complicate the HIV and AIDS infected children, adolescents, and women's ability to access medical care and comply with complicated medication regimens. The goal of this article is to provide an overview of the psychological and social issues, which impact families that are affected by HIV and AIDS. EpidemiologyHIV and AIDS infection of adolescents and women is increasing, while the rate of vertical transmission of HIV to children has decreased with the use of medication during pregnancy. 1 According to the United States Health and Resources Services Administration (HRSA) it is estimated that there are 40,000 new HIV infections annually, approximately 25% of these are believed to occur in individuals between the age of 13 and 21. HRSA also reported a higher percentage of females in the AIDS cases among adolescents and young adults: 55.5 percent from the age of 13 to 19 and 40.5 percent from the ages of 20 to 24.2 As of 1992, it has been estimated that 24,000 children have been orphaned by AIDS in the United States.3 According to the Bureau of HIV/AIDS of the Florida Department of Health, the numbers of HIV and AIDS case in Duval County through April 2000 were 688 and 3873, respectively. It is believed that the number of reported HIV cases is an underestimation of the number of actual cases, since reporting of positive HIV results began in 1997 in Florida. Duval County ranks number 5 in reported HIV and AIDS cases within the state.4 Family IssuesThere are complex psychological and social issues that impact a family's ability to cope with HIV and AIDS infection. Individuals who participated in high-risk behavior that lead to HIV infection may experience intense guilt, shame, and anger. These emotions may be intensified for women who transmit HIV infection to their children. Furthermore, the stigma related to HIV infection may lead to social isolation. Often, families do not disclose their HIV status to family members, including the infected child, and their community for fear that they and their children will be mistreated. This isolation prevents families from obtaining valuable social support during difficult times.5, 6, 7 It is important for members of the medical community to be aware of the fears that these families may have regarding disclosure, as women may not utilize services if they believe that their HIV status will be disclosed. HIV and AIDS infection is viewed as a multi-generational illness. Individuals may be overwhelmed by the loss of a number of family members, as well as coping with their own diagnosis. Illness and grief interfere with a parent's ability to provide consistent care for children.7 Due to illness or death of the parents, primary care responsibilities often fall to extended family members. In fact, grandmothers often become the primary caregiver for multiple children. Loss of parents and changes in caregivers interfere with mastery of developmental milestones and coping abilities of children and adolescents.4, 5 Parent's failure to develop a permanency plan (create a will identifying a legal guardian for their children) further complicates this issue, particularly for children who are HIV infected. Development of a permanency plan and providing continuity of care are challenging tasks for parents with HIV and AIDS infection for numerous reasons. These reasons include denial of the severity of illness, fear of disclosure, health status of parent and HIV infected child, lack of reliable adult to provide care, psychological adjustment of parents, and domestic violence in the home.4, 6 Another complicating issue, is that HIV and AIDS disproportionately affects children, adolescents, and women of inner city, primarily minority communities.7, 4, 5 Individuals from inner city communities, such as Jacksonville, often struggle to cope with problems in their homes, schools, and neighborhoods that increase their chances of participating in high-risk behaviors. Examples of the problems that they face include single parent families, domestic violence, physical abuse and neglect, substance abuse, and mental health diagnosis. To complicate matters many of these individuals suffer from cognitive and behavioral delays related to HIV and AIDS infection, poor education, and a history of physical trauma. These factors further place these individuals at risk for mental health illness (e.g., depression, post-traumatic stress disorder, conduct disorder, and anxiety), developmental deficits, and behavioral problems. Mental health treatment may be utilized to address the cyclic patterns of poverty, violence, abuse, and neglect. In addition, it is important to address both primary and secondary prevention issues with individuals in the community, particularly with adolescents, who are more likely to participate in behaviors that expose them to HIV or other sexually transmitted diseases. Adherence IssuesThere are numerous issues that interfere with HIV and AIDS infected individual's ability to comply with complicated medication regimens. Barriers to medication compliance include a lack of understanding of the long-term results of noncompliance, myths and misunderstandings about the effectiveness and necessity of medication, distrust of the medical community, conflicts with lifestyle choices, substance abuse, mental health illness, and side-effects of the medication.10, 5 Adherence programs developed to increase compliance in adolescents and adults have emphasized communication between patient and medical caregiver, development of a supportive medical setting, and determination of whether or not the HIV infected individual is ready to take medication.11 Psychological interventions also may include training children to swallow pills, identifying cognitive deficits, and difficulties in dealing with social issues that prevent compliance. Neuropsychological IssuesThe progression of HIV infection to AIDS infection has been associated with central nervous system dysfunction. The signs and symptoms of HIV-related CNS infection include cognitive impairment (i.e., short term memory deficits and confusion), changes in personality (i.e., apathy and erratic behavior), psychotic symptoms (i.e., hallucinations and suspiciousness), and motor symptoms (i.e., ataxia, and weakness). Careful assessment of symptoms is necessary to distinguish central nervous system dysfunction from the effects of mental health illness (i.e., depression and anxiety), as well as other factors that effect neuropsychological functioning. These factors include, but are not limited to, prescribed and recreation drug use, stress of living with a chronic/ terminal illness, and nutritional deficiencies.6 It is important to note that a number of behavioral and psychosocial problems have been noted in HIV and AIDS infected children. These problems include hyperactivity, attentional deficits, social withdrawal, and depression. In addition, cognitive deficits, learning disabilities, and developmental delays have been related to central nervous symptom dysfunction in children.12 Of course, it is possible that these disorders are related to environmental influences and due to HIV and AIDS infection. Careful assessment of a child's functioning will help to determine the cause of the deficit and appropriate treatment. ConclusionHIV and AIDS infected individuals and their families are forced to cope with a multitude of stressors. Supportive psychotherapy may be utilized to improve quality of life, increase compliance with medical care and medication regimens, and address mental health disorders. Historically, traditional psychotherapy and psychoeducational interventions have not addressed the ethnically and culturally diverse issues often relate to HIV and AIDS infection. Therefore, professionals must offer flexible and effective interventions that encourage HIV and AIDS infected individuals to efficient coping and management skills.7 Psychologists and mental health counselors may help to foster a relationship between the medical care providers and the children, adolescents, and women who are HIV and AIDS infected to ensure that patients and their families are able to access and comply with appropriate medical care.5 References
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