Chapter Title Psychosocial Aspects of HIV/AIDS: Children and Adolescents Kristin L. Close, LMSW Objectives Overview 1. Identify psychosocial factors that affect children and Children and adolescents are an ever-growing part of the adolescents infected with human immunodeficiency human immunodeficiency virus (HIV)/AIDS pandemic. virus (HIV)/AIDS and how these factors relate to In 2007, an estimated 2.1 million children younger than general chronic illness. 15 years were living with HIV, and 290,000 children 2. Identify sources of stigma and discrimination died from the disease in 2007 alone. HIV/AIDS takes against children and adolescents and explore how an enormous physical toll on those infected by the stigma affects disclosure of HIV status. virus as well as those who care for them. However, the 3. Examine issues of death and dying and the grief/ psychological toll of the pandemic is just as significant. bereavement process that follows for survivors. The psychological and social effects of HIV/AIDS are 4. Identify particularly vulnerable pediatric and magnified in today’s youth. adolescent populations and explore reasons why they are at increased risk of HIV/AIDS infection and Children involved in the pandemic face a set of psycho- progression. logical and social issues that must be addressed, not 5. Discuss special issues encountered by adolescents overlooked. This chapter will discuss how children and infected with and affected by HIV/AIDS. adolescents are affected by important aspects of the HIV/ AIDS pandemic, including stigma, disclosure, and death, Key Points as well as how health care professionals can support them while dealing with these challenges. 1. Pediatric patients with HIV/AIDS experience many of the stages and stresses of other pediatric chronic HIV/AIDS as a Chronic Illness and terminal illnesses. 2. Stigma affects all aspects of caring for children and In many parts of the world, HIV/AIDS is still viewed adolescents infected and affected by HIV/ AIDS, solely as a terminal illness, a disease from which there especially as they face the issue of disclosure of HIV is no recovery. However, with the ever-improving status. availability of antiretroviral therapy, HIV is increasingly 3. Death and bereavement are important aspects of recognized as a chronic, rather than terminal, illness. This chronic illness that must be addressed with children transition requires psychological adjustments, especially and their families. in the pediatric and adolescent populations. 4. Orphans and young girls are at increased risk of contracting sexually transmitted infections, A chronic illness is a disorder with a protracted course including HIV, and of receiving less support and that can be progressive and fatal or associated with education than their peers. a relatively normal life span despite impaired mental 5. Adolescents are a unique population with a pivotal and/or physical functioning. This broad definition role in the future of the pandemic. They need special encompasses multiple types of conditions, ranging care and attention, with an emphasis on support and from fatal to lifelong, including HIV/AIDS. Unlike acute education. conditions, which develop and resolve within a limited amount of time, chronic conditions are permanent 319 HIV Curriculum for the Health Professional Source: UNICEF/UNAIDS 2004 and usually have no cure. Of the main characteristics • Preparation for and acceptance of the patient’s experienced by children with chronic conditions, children eventual death with HIV infection may experience the following: • Limitation of developmentally appropriate For pediatric patients with HIV, the preceding stages functioning have increased psychological stress. Stigma surrounding • Dependency on medication HIV negatively affects disclosure, influences daily care of • Need for more medical care than is normal for their the patient, and even continues through to the patient’s age death. With regard to difficulties with long-term care, • Disfigurement resulting from certain opportunistic adherence to HIV medication regimens is extremely infections or severe wasting accompanying taxing on the patient and his or her family. To prevent progressive disease resistance, the child must take the medications with a greater than 95% rate of adherence. This task can be Because chronic illness persists for an extended time, difficult for an adult patient and increasingly difficult infected children and their caregivers go through when the patient is a child or adolescent. Oftentimes, psychosocial stages that can be sources of great stress, caregivers fall into the pattern of “miscarried helping.” including the following: In miscarried helping the family feels the overwhelming • Initial diagnosis need to help the patient with his or her medication • Disclosure of disease status to the child regimen and becomes excessive in the frequency of their • Difficulties resulting from long-term care, including helping. They may also invoke negative feelings in the financial and emotional strain patient by telling him that he is “bad” when he misses his 320 Psychosocial Aspects of HIV/AIDS: Children and Adolescents pills. As the patient gets older, he wants to have a sense of adjustments and place strain on family relationships autonomy from his caregivers. With the family’s need to and routines. Amid the required behavioral changes, help and the patient’s need for autonomy, conflict arises, the child’s caregivers must also try to maintain a sense which can lead to poor health outcomes for the patient. of normalcy for the child. Despite living with a chronic Health care providers must guide the caregiver to ask condition, children still need rules, discipline, and the patient how to best be helpful regarding medication routines. Routines are especially important for children adherence. By giving the patient the power to direct the dealing with stressful or new situations because they help help from their caregivers, the patient feels a sense of provide a sense of security. control over the helping while the family can remain involved in the care. Living with a chronic illness can lead to psychological stress that can build over a long time. People living The stressors of a chronic illness can be more challenging with HIV are twice as likely to be diagnosed with major when the patient is a child. This situation increases the depressive disorder. Children living with HIV may have necessity for caregivers and other family members to decreased social functioning in comparison with their assist with medical care and activities of daily living. peers. This decline in social functioning or peer relations Chronic illness creates a series of challenges for those may signify the child’s increased difficulty managing his involved in the child’s care. These challenges fall into or her HIV diagnosis and/or treatment regimen. This three general areas: emotional, cognitive, and behavioral. decline may be more apparent as the child grows older Emotionally, the family must come to accept the child’s and the significance of his or her HIV infection changes diagnosis. Doing so includes grieving the loss of the idea with relation to developmental stage. Also, living with of their once-healthy child, as well as guilt, sadness, and a long-term chronic condition also lends a patient to anger. If the child acquired HIV through mother-to-child experience burnout. With burnout, a patient may feel transmission, the mother may feel enormous guilt and depressed and isolated. He or she is frustrated with the may be blamed by other family members for the child’s medication regimen and the constant requirement to infection. maintain greater than 95% adherence. Often families will shame or guilt their children into taking their The cognitive challenge is to educate the child’s family medications consistently, which will wear down the about HIV/AIDS. They must understand the available patient mentally over time. Health care providers can help treatment options and the importance of adherence to reduce patient burnout in chronic illness by using “the 4 the prescribed medication regimen. If they understand Rs”: how the medications work, family members can 1. Realistic goals become an informed asset to the team providing the 2. Reduce blame and criticism in medication adherence child’s medical care. The family should also be educated 3. Reach for progress, not perfection regarding the symptoms of disease progression and 4. Recognize negative feelings about disease possible side effects of medications. This way the management as normal and important for the family will know what to look for when the child falls patient to discuss ill or develops new symptoms. The cognitive challenge also includes education specifically for the patient. Children with a chronic illness such as HIV/AIDS face The pediatric patient must have a developmentally unique challenges that make their lives more difficult. It is appropriate understanding of why they see the doctor important to understand the long-term effects that these and why they take medications. This understanding may challenges can have on the children and their caregivers. include using developmentally appropriate language With proper support from their health care providers and such as “bugs” in place of HIV or “soldier cells” in place their community, the challenges of living with childhood of CD4/T cells. Often, education with children is more HIV/AIDS will be easier to surmount. successful with visual tools such as drawing