Children with HIV: an extensive review of the literature.

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.

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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 to additional sexually transmitted infections and the clustering of HIV infection (Fiore, et al, 2001).

The ramifications of HIV infection effect the entire family system. Healthy brothers and sisters are left to bear the consequences of the illness on their family. While caregivers struggle to cope with the disease, these children must cope with the loss of their mothers, brothers, and sisters. The literature on siblings of chronically ill children identifies many common themes expressed by children living with brothers and sisters who are infected with HIV. Siblings of chronically ill children are a population at risk. Children function in an atmosphere of restricted communication and are likely to experience significant stress. Often the children are kept uninformed by parents who are trying to spare them the pain of dealing with a socially stigmatized diagnosis (Grosz & Hopkins, 1992). A diagnosis of AIDS, or even a positive test, is thought to be predetermined and to considerably shorten the course of one's life. HIV/AIDS is thought of as not merely chronic, but as an incurable and a deadly disease.

While the number of HIV cases continues to increase, AIDS has also become a chronic illness for persons surviving for longer periods of time. Earlier hospital discharges result in a growing number of people with AIDS in the home on complex medical regimens (Smith & Rapkin, 1996). In families that have multiple members with HIV infections, it may be more difficult for caretakers to provide support. One study considers psychobiological stresses in three cases where both the women and their husbands were HIV-positive. The women indicated that their spouses' chronic poor health and ongoing medical treatment and hospitalization were major stressors in their lives (Semple et al., 1993; 1995). In sum, in families where multiple members are infected, including children, coping with stressors may be overwhelming.

Family Reactions and Adaptations to Having a Child with HIV Infection

The reactions and adaptations of families infected with and effected by HIV and AIDS varies across family units, however, some parallels may exist. When parents first learn that their child is HIV-positive, their lives change immediately, forcing them to cope with many stressors. Initial reactions to shock and disbelief are slowly replaced by more pragmatic responses. Following a 'mourning period' of several days to a few months, households go through a period of adjustment (Bharat & Aggleton, 1999). The family must readjust their expectations for their child, deal with financial issues, maintain communication with healthcare professionals and social services, and face social isolation from family and friends. For effective adaptations to occur there may need to be significant changes in family roles, relationships, and organization in order to minimize stress. While caring for children that are chronically ill is a full time job in itself, most parents may also manage employment responsibilities.

Even with recent medical advances, being diagnosed with HIV is nothing less than devastating, but individuals and families differ widely in their response to having a child with HIV infection. These responses are dependent upon religious and cultural backgrounds, past life experience and the age of the child at diagnosis (Leyser, 1994; Miller, 1994). Other factors that may influence familial reactions include attitudes about HIV positive persons; knowledge about health care practitioners; and willingness to accept help from professionals, friends, and other family members (Hanline & Daley, 1992; Lynch & Hanson, 1992; McCubbin, Thompson & Thompson 1993).

Many childcare issues challenge parents that are HIV-positive. Antle, Wells, Goldie, DeMatteo, and King (2001) studied the challenges of parenting for families living with HIV/AIDS. They examined the experiences of 105 mothers and fathers living with HIV and AIDS. The understanding of parenting gained from the study included parent's chronic sorrow, stress and burden, normalization, stigma, secrecy, and disclosure. In this study parenting was found to be a source of joy and an additional challenge in an already complicated life. Important themes that came out of the study were viewing family life as precious time, focusing more time and energy on being a good parent, the different effects of HIV and AIDS, the parenting preparation needs of fathers, and the impact that different parenting styles and demands had on children. Another important outcome of this study was that despite the considerable difficulties these mothers and fathers faced, there was still the desire and determination to provide a happy life and a secure future for their children.

As HIV infection rates have continued to increase in some segments of the population, the number of mothers and children infected is also increasing (Hackl, Somlai, Kelly, & Kalichman, 1997; Kaplan, Marks, & Mertens, 1997). The responsibility of parenting becomes an arduous task for HIV-positive mothers and fathers who are coping with a lifelong and life-threatening condition. As a result of early diagnosis and access to improved treatments, HIV infected parents and children are living longer, and with far fewer children being born to HIV-positive mothers. Although medical advances exist, there continue to be dynamics and needs that are very complex and relate to the different patterns of infection within families, the uncertainty of their health and future, as well as the stresses associated with living with a highly stigmatizing condition (Antle, et al 2001).

An important and difficult issue facing families affected by HIV is the disclosure of the diagnosis within the family, which includes disclosure to infected children, friends, schools and the wider community, and disclosure by infected parents to their children. Reasons for deciding to disclose include age of the child, the parent's or caregiver's readiness to tell the child, and the perceived readiness of the child. It is generally accepted that parents or primary caregivers should be the ones to disclose their child's diagnosis, with the support of professional mental health staff. Parents of the infected children have to decide whether to disclose to the school (Thorne, 1997). This disclosure is usually necessary because of medication schedules and absenteeism due to illness and doctor's visits.

Coping Strategies

Ways in which persons infected with and families effected by HIV and AIDS cope and adjust have major implications for the family unit, as well as on persons living with these diseases. Children infected with HIV and their families are subject to ongoing stress (Fleishman, Sherbourne, Crystal, & others, 2000). Children infected with HIV must deal with night sweats and nausea, unpleasant side effects of medication, and periods of physical disability. They may have to cope with loss of employment, rejection by members of their social network, hospitalization, impoverishment, and the prospect of premature death. Coping strategies combined with social conflict and support, effect the psychological adjustment process. Fleishman, et al., (2000) found that compared with perceived social support, social conflict was more strongly related to coping behaviors. Negative encounters with others--such as arguments, misunderstandings, and inappropriate demands--had a very strong effect on negative coping strategies, such as wishful thinking, anger, and especially social isolation or withdrawal, and on negative mood. Coping by social withdrawal was also related to negative mood. A dynamic may occur in which conflicting social interactions and social isolation aggravates each other and result in escalating psychological distress. Also, psychological distress is one of the many factors that exacerbate a medical condition (Beardsley, 1998).

Psychosocial variables and coping have also received some attention in research studies. In a study of 15 symptomatic and 14 asymptomatic men who are homosexual and HIV-infected, Wolf et al. (1991) found that persons who had higher self-esteem had better coping skills; and used effective coping techniques (e.g., positive self-talk). Similar findings emerged from a study by Namir, Wolcott, Fawzy, and Alumbaugh (1987), who found that effective coping influenced the availability of social support. Those who coped well and who were more active and positive in their outlook were perceived more positively and were avoided less. However, those who accepted their condition poorly were in greatest need of social support, but least likely to get it. Namir, Wolcott, and Fawzy (1989) also noted that the qualitative aspects of social support were important. They found that the properties of the network were more important than the number of people in the network for maintaining the positive mood and outlook that is important for effective coping. Networks are also related to more healthy coping strategies (Leserman, Perkins & Evans, 1992).

Coping has been conceptualized as a process (both cognitive and behavioral) of actively dealing with taxing internal and external stresses (Lazarus & Folkman, 1984; Pearlin & Schooler, 1978). The interrelationships among HIV status, key psychosocial variables, social support, and coping have been explored in recent years. Key et al (1995) cite social stigma and isolation, fear of acquiring HIV, fear of being infected by diseases associated with AIDS, fear of abandonment, guilt, anger and grief, and economic hardship as the problems commonly experienced by families coping with HIV and AIDS. The direct results of each social stigma and isolation are as follows:

Social stigma and isolation: Because of homophobia and the unrealistic fear of contamination, many families isolate themselves from society and available support.

Fear of Acquiring HIV: Family members often experience at some point the fear of becoming infected, even when one rationally knows there is no basis for the fear. The person with HIV or AIDS also fears infecting others.

Fear of being infected by diseases associated with AIDS: Many family members also feel that they may become infected by the diseases associated with AIDS.

Fear of abandonment: People with AIDS are plagued by questions of what will happen when they become too ill to continue to care for themselves. Some fear rejection by family and friends.

Guilt: Many family members feel that they somehow "caused" or "could have prevented" their loved one from becoming infected with HIV. There is also guilt experienced by family members who once rejected a now dying relative or guilt arising from past behaviors that may have led to one's own infection or not being able to handle the emotional strain.

Anger: Anger can be directed in many directions: at fate or a higher power for the illness, at the disease itself, at one's self for behaviors that may have led to the infection, at the family member for being sick, at the person who may have been the source of the infection, and at society for being judgmental and unsupportive.

Grief: Extreme sadness that is common at the impending or actual loss of life, relationships, normalcy and potential.

Economic hardship: Persons with AIDS and families often experience economic hardship due to loss of earning power, the high cost of treatment, time away from work by persons infected with and affected by HIV and AIDS, and the lack of adequate financial assistance.

There are no stages to these eight problems. Some people experience all eight at the same time or move into different ones at different times, depending on family resources and understanding. Families should seek out and use support groups that exist for AIDS patients and their families. Often families with AIDS become isolated and attempt to keep the illness a secret from the community. However, it is still important for them to use support systems that are available, whether inside or outside the family, to aid in the coping process. Depression, which is an illness that can affect the mind, mood, body and behavior, is another problem that is faced in families having a child with HIV and AIDS. As a result of research, men, women and young adults with HIV and AIDS are now able to lead fuller, more productive lives. As with other serious illnesses such as cancer, heart disease or stroke, however, depression may also impact persons with HIV and AIDS. Treatment for depression helps people manage and cope with HIV and AIDS, thus enhancing survival and quality of life.

Despite the enormous advances in brain research in the past 20 years, depression often goes undiagnosed and untreated. Although as many as one in three persons with HIV may suffer from depression (NIH, 2002), the warning signs of depression are often misinterpreted. People with HIV, their families and friends, and even their physicians may assume that depressive symptoms are an inevitable reaction to being diagnosed with HIV, and so they may not devote care and attention to this psychological state. However, depression is a separate illness that can and should be treated, even when a person is undergoing treatment for complications associated with HIV or AIDS. Some symptoms may be related to HIV, specific HIV-related disorders, or medication side effects. However, skilled health professionals are able to recognize the symptoms of depression and obtain information pertaining to the duration and severity, diagnose the disorder, and suggest appropriate medical and psychological treatment (NIMH, 2002).

While there are many forms of treatments for depression, treatment regimens must be carefully chosen by a trained professional based on the circumstances of the patient and family. In the context of HIV and AIDS, treatment for depression can easily be managed by a mental health professional--for example, a psychiatrist, psychologist, or clinical social worker--who is in close communication with the treating physician. Recovery from depression takes time because Medications for depression can take several weeks to work and may need to be combined with ongoing psychotherapy; and not everyone responds to treatment in the same way. Additionally, prescriptions and dosing may need to be adjusted. Hence, no matter how advanced HIV, the person does not have to suffer from depression, as treatment can be effective (NIMH, 2002). Finding out that a child has HIV can be frightening. One way to fight the fear is to learn as much as possible about the disease. Knowing about HIV and AIDS will also help the caregiver in providing the best care possible. The best medical information that is individual specific comes from the medical personnel. The good news about HIV is that early treatment help many people with this infection live longer, healthier lives. It is normal to feel sadness, anxiety and fear when the child has tested positive for HIV. However, treatment can be helpful with long bouts of depression and anxiety.

Parenting under Special Circumstances: Psychosocial Issues

For most families, the anticipation of having a child is filled with joy, fantasy, and anxiety. The diagnosis of HIV, like other serious conditions, alters the life and future of the family in ways that could never be anticipated. As these parents wrestle with the special needs of their children, both infected and effected, they also must face the fact that the future of the child with the disease will be different from the hopes, dreams and aspirations that they and the child might have. The stigma associated with HIV and AIDS has resulted in some orphans being rejected by extended family and losing their birthrights to shelter, food, and schooling (Thorne, 1997). There is also guilt associated with a now dying child that past behaviors may have led to one's own infection or that of the child. Persons then experience the guilt associated with abandoning the child because of fear of infection or not being able to handle the emotional strain.

Hirschfeld et al. (1996) examined the incidence and characteristics of the perception of pain in a cohort of families with children with HIV infection. The study involved interviews with 61 children with HIV infection and their caregivers, along with 19 children with cancer and their caregivers. Fifty nine percent of children infected with HIV and 55% of their caregivers described pain as a component of their illness that impacted their lives on a daily basis. Hence, it was concluded that physical pain is common among children infected with HIV and can adversely impact their lives. Hence, pain management should be a component of the general care provided to persons infected with HIV and AIDS. Chronic sorrow is particularly relevant for this population because HIV and AIDS is a lifelong condition, with multiple family members sometimes being infected. Additionally, the child who is HIV-positive may also have developmental delays (Lesar & Maldonado, 1997; Melvin & Sherr, 1995). Wiener, Riekert, Theut, Steinberg, and Pizzo (1995) reported that parents of HIV-positive children maintained the same level of anticipatory grief, depression, anxiety, and self-blame over a six-month period, irrespective of changes (either positive or negative) in the child's medical status or care needs. This finding led them to conclude that regardless of how ill the child is, knowledge that HIV and AIDS is ultimately fatal places a heavy emotional burden upon parents.

Many professionals and families have used a bereavement analogy to describe the emotional response and adaptation of parents who have children with disabilities or chronic illness (Davis & May, 1991; Fraley, 1990; Seligman & Darling, 1989; Teel, 1991). In this context, chronic illness is constructed as a loss, and the response to this loss is analogous to the death of a loved one. Chronic sorrow is reflected in the parents' persistent feelings of sadness that recur with varying intensity throughout their lives. The disruptive effects of HIV infection on family life are immense. Stress is also a significant factor in the lives of families living with HIV and AIDS (Antle, et al 2001). In a study of parents caring for children that are HIV-positive, the need for information on stress management, relaxation techniques, and coping came second only to the need for more information about HIV itself (Weiner, Riekert, Steinberg, & Pizzo, 1997). Furthermore, Lesar and Maldonado (1997) reported that stress symptoms were highest among HIV-positive primary caregivers of HIV-positive children. Similarly, in a study of HIV-positive women from diverse ethnic backgrounds, Kaplan, Marks, and Mertens (1997) found significantly higher levels of anxiety than the general population and also pointed out that interventions are effective only if they are responsive to the diverse cultural backgrounds of clients.

The demands of parenting when considered in relation to the experiences about stigmatization and injustices, combined with the uncertainty of their own health and future, highlight the need for professionals to better understand how to support mothers and fathers living with HIV/AIDS. Parents present a range of emotional responses with respect to their children and to their parenting roles. Parents expressed that it was hard to know that their child was HIV-positive, and yet this sadness was replaced by joy when the child's health was stable. More than any other illness, the diagnosis of HIV and progression to AIDS tends to subject infected and effected people to punishment and marginalization.

Many times, families with AIDS become isolated and attempt to keep the illness a secret from the community. However, it is still important for families to use support systems that are available, whether inside or outside the family, to assist with coping with the disease. The rate of HIV infection is increasing day by day and because of its medical interventions, children are living longer. HIV and AIDS are therefore considered chronic illnesses. Hence it is important that more emphasis be given to early detection and early intervention, which allows persons infected to live a life that is as medically stable and meaningful as possible. Research has confirmed the benefits of early diagnosis of HIV and AIDS, such as early socio-medical interventions to lessen the severity of HIV and AIDS and its accompanying social, economic, and related problems (Johnson, Nair, & Alexander, 1987; Ploughman, 1995/1996; Rogers, 1992). Research has also shown that early detection of HIV can improve one's health and modify conditions that influence patient's care and management (Goedert & Cote, 1994). Prompt diagnosis can lead to early health care benefits, such as case management, emotional and financial support, and legal aid, as well as awareness of the danger of immunizations on HIV-compromised immune systems (Scofield, 1995). Families can be informed of the availability of prophylactic treatment and antiviral drugs to prevent secondary infections. They can also be told about the required nutrients and feeding techniques when children have difficulty swallowing and eating (Marder & Linsk, 1995; Shelov, 1994).

As people live longer with HIV infection, they become increasingly vulnerable to multiple emotional and social problems. Progressive immune system deterioration, the onset of symptomatic illnesses, as well as other HIV-related events precipitate psychological distress (Kalichman, 1995). Physical limitations resulting from both disease and treatments threaten the quality of life and daily functioning of people living with HIV infection (Ragsdale & Morrow, 1990). Disruptions to social functioning also occur with HIV infection, including AIDS stigmatization (Herek, 1990), relationship conflicts (Turner, Hays, & Coates, 1993), discrimination, and multiple losses (Martin & Dean, 1992).

People living with HIV confront a myriad of stressors over the course of their infection. Social support groups offer a means of addressing the support needs of people living with HIV. Kalichman and Sikkema (1996) examined the utilization of support groups for meeting support needs among people living with HIV-positive persons. They worked with 34 persons who had attended HIV support groups and 29 who had not attended support groups. Participants completed measures of distress, coping, and social connectedness, and later open-ended interviews concerning their support group experiences. Results showed that those who attended support groups knew they were HIV-positive for a longer time, reported less emotional distress, and had more social contact than did non-attendees. However, non-attendees endorsed avoidant coping strategies to a greater extent. Thus, persons who were HIV-positive and attended support groups become socially reconnected with time, but persons who did not exhibited avoidant coping styles, and experienced greater emotional distress.

Melvin and Appleby (1995) describe the establishment and development of a hospital-based support group for the parents of children infected with and affected by the HIV virus. The issues facing families affected by HIV infection are many and diverse. They range from a need to plan future care and provision for dependent children, to dealing with underlying psychological processes associated with loss, uncertainty and guilt. The monthly group meetings enabled parents from a wide variety of social and ethnic background to share issues concerning the stresses of family life and coping with HIV. A sense of group cohesion emerged which withstood the many complex changes and losses affecting many of its individual members. The group as a whole was able to offer support and understanding to individual families at particularly vulnerable and upsetting times, for example during the illness and death of their child.

Evidence suggests that ethnically diverse families who are oppressed by race and socioeconomic status are less likely to seek early treatment and tend to die sooner (National Commission on AIDS, 1992). AIDS research suggests that researchers and health care providers should develop a relationship of trust with those whose lives are the subject of study, to determine the accuracy, sensitivity, and complexity of the data (Coyle, Boruch & Turner, 1991). Health care utilization and community support are of utmost importance in minimizing the socio medical problems of people with HIV and AIDS (Goicoechea-Balbona, 1998).

Learning to cope

HIV is most often diagnosed in relatively young people whose illnesses may profoundly alter the lives of their parents and loved ones. Although most research on the social and emotional impact of the disease has centered on persons infected, the families of people with HIV and AIDS also need help coming to grips with this devastating illness (Rigoglioso, 1994). Consist with persons that are HIV-positive, families face many of the same issues. Unlike other chronic, life-threatening illnesses, persons with HIV and AIDS are ostracized and experience an enormous amount of stigma. Although contracting HIV from casual contact is virtually impossible, a fear of persons with HIV and AIDS still exist. According to Rigoglioso (1994), approximately 99.5% of infection occur through sexual intercourse, shared needles, or transmission from mother to fetus. To date, there is no evidence to suggest that HIV can be spread through contact with saliva, urine, or feces.

It is not unusual for persons with HIV and AIDS to hide their diagnosis from parents or family members because they fear rejection or because they perceive their relationships as distant. Others fail to disclose their HIV-positive status because of a desire to protect the family from the news, which is a way of sparing themselves from the pain of dealing with AIDS. Families of people with HIV and AIDS often feel a tremendous amount of anger, which is both normal and healthy. However, anger becomes unhealthy when it is directed toward the person with AIDS (Rigoglioso, 1994). Every family unit is different, and there is no "right" way to cope with AIDS. According to Rigogliso (1994), families who appear to manage best are those who acknowledge the illness and discuss it directly; seek help for themselves; work through issues of guilt; reach spiritual acceptance of HIV and AIDS without perceiving it as a moral issue; avoid blaming the person infected; support each other in difficult times; and respond to the person with HIV and AIDS with love and acceptance, rather than fear and judgment (Rigoglioso, 1994).

Implication for the Mental Health Professionals

Families of children with HIV infection come into contact with a variety of professionals, which may include, but are not limited to, physicians, nurses, teachers, therapists, psychologists, counselors and social workers. Individually, these professionals are responsible for explaining implications of the initial diagnosis and providing counseling, presenting various treatment options, and teaching intervention and advocacy strategies. Ideally, services should be in place and made available to families at the time they first learn of the child's diagnosis. Often the initial contact that is established with families sets the tone for future interactions. The professionals involved must have an integrated approach that includes coping and rehabilitation. The challenge, for all concerned, is therefore to meet the priority health needs of the child and the psychosocial needs of the family. This can be achieved by counseling and psychosocial support that would allow the family to make informed decisions about their child and themselves. It is important to ensure that children with HIV infection, and their families are not discriminated against and receive compassionate care.

Many families with children infected with HIV isolate themselves in an attempt to keep the diagnosis a secret from others. Although the support of family and others are extremely important to the adjustment process, a lack of support may exist within the family structure. Hence, support outside the family becomes extremely important. The overall approach of the professional toward the family should be one of empowerment. Although empowering the parents of children infected with HIV removes control from the professionals, it promotes better decision-making and mastery of care by the family. It also leads to a true partnership between parents and professionals. It is for the professionals to see that an appropriate level of care is provided to children who are in need of intensive and long-term services.

HIV infection creates a tremendous stress and tension within the household. Such families require specialized and regular health care but generally face barriers in obtaining that care. Hence health care should be easily accessible to these families. The health care professionals can assist the family in their decision to disclose their child's condition and can serve as an advocate in the educational system and offer guidance to school personnel on the medical issues that may arise for the HIV infected child. Also, many of these families are surrounded by an environment of death and dying, hence the families are always affected by, and coping with, these dramatic and cumulative losses. Thus, professionals have a responsibility to learn more about family needs and to develop relevant and appropriate services which support them in this demanding role. One family member's chronic illness influences the lives of everyone in the family. Roles and routines change. It may seem as if the professionals that care for the ill family member become part of the family. The demands of care giving must be negotiated, especially since family members' emotions may be on a continuous rollercoaster ride. On the other hand, families may come together and grow closer. Their lives may take on new meaning. They may find rewards they had not expected on their journey through illness. The only certain thing is that chronic illness is a family experience, one that is shared by all.

Family therapy is valuable for the whole family, including the child infected with HIV and AIDS. During sessions, the therapist can help the family discuss how they are dealing with the illness, make decisions together, and learn how to utilize their own internal strengths and resources to address interpersonal problems. Family therapy sessions may also include medical professionals who are involved with the child's treatment. Family therapy provides an opportunity for clarification of treatment and other issues, such as reasonable expectations for the future functioning of the child. In this world where all children face a lifetime of risk from HIV infection, children are everyone's responsibility. It is important that professionals understand the complex dynamics in families living with HIV infection. Mental health professionals working closely with both parent and child can play a critical role in providing a wide range of services to families, in promoting these adjustments and may be instrumental in determining the prognosis of the child and the outcome of the entire family.

Conclusions

As any family progresses through life, its members face many challenges and changes; these challenges and changes are magnified for the family of a child with HIV infection. The child, the parents, siblings, extended family members, stepfamily members, and friends are all affected, and they may undergo a period of grieving for their loss of a "normal child". Social isolation, fear of infection, guilt, anger and grief are problems commonly experienced by families coping with HIV and AIDS. Over time, the family's coping strategies generally improve. Parents learn to master the child's care and to advocate effectively for necessary medical, educational and other services. The child learns to cope with HIV infection at school and in the community. The teacher, counselor, social worker, therapist, and physician working closely with both parent and child may play a critical role in promoting these adjustments and may be instrumental in determining the prognosis of the child and the outcome of the entire family. The relentless course of HIV infection affects numerous aspects of a person's social and emotional well being. Family and other support groups have become the most popular social support service available to people living with HIV infection and are aimed at improving an individual's quality of life.

References

Abrams, E., & Nicholas, S. (1990). Pediatric HIV infection. Pediatric Annals, 19, 8, 482-83, 485-87.

American Psychiatric Association (2002). Let's talk facts coping with AIDS and HIV. http://www.medem.com/medlb/article_detaillb.cfm? article_ID=ZZZPRUUD67C&sub_cat=45 Retrieved on Sept. 9, 2002.

Antle, B. J., Wells, L. M., Goldie, R. S., DeMatteo, D., King S. M. (2001). Challenges of parenting for families living with HIV/AIDS. Social Work, 46(2), 159-169.

Bharat, S., & Aggleton, P. (1999). Facing the challenge: Household responses to HIV/AIDS in Mumbai, India. AIDS Care, 11(1), 31-44.

Beardsley, T. (1998). Coping with HIV's ethical dilemmas. Scientific American, 279(1), 106-107.

Carter, E. A., & McGoldrick M. (1980). The family life cycle: A framework for family therapy. New York: Gardner Press.

Coyle, S. L., Boruch R. F., & Turner, C. F. (Eds.). (1991). Evaluating AIDS prevention programs. Washington DC: National Academy Press.

Davis P.B., & May, J.E. (1991). Involving fathers in early intervention and family support programs: Issues and strategies. Children's Health Care, 20, 87-92.

Fiore, T., Flanigan, T., Hogan, J., Cram, R., Schuman, P., Schoenbaum, E., Solomon, L. & Moore, J. (2001). HIV infection in families of HIV-positive and 'at-risk' HIV-negative women. AIDS Care, 13(2), 209-214.

Fleishman, Sherbourne, C. D., Crystal, S. & others (2000). Coping, conflictual social interactions, social support, and mood among HIV-infected persons. American Journal of Community Psychology 28(4), pp.421-453.

Florence, M. E., Lutzen, K. & Alexius, B. (1994). Adaptation of heterosexual infected HIV positive women: a Swedish pilot study. Health Care for Women International, 15(4), 265-273.

Fraley, A. M. (1990). Chronic sorrow: A parental response. Journal of Pediatric Nursing, 5, 268-273.

Gellerstedt, M. E., & leroux, P. (1995). Beyond anticipatory guidance: Parenting and family lifecycle. Pediatric Clinics of North America, 42, 65-78.

Goedert J. J., & Cote, T. R. (1994). Public health interventions to reduce pediatric AIDS [Editorial]. American Journal of Public Health, 84, 1065-1066.

Goicoechea-Balbona, A. (1998). Children with HIV/AIDS and their families: A successful social work intervention based on the culturally specific health care model. Health and Social Work, 23(1), 61-69.

Gong, V. & Rudnick, N. (1986). AIDS, facts and issues. New Jersey: Rutgers University Press.

Gortner, C. (1997). Children and HIV. Positive News. 5/97.

Grosz, J. & Hopkins, K. (1992). Family circumstances affecting caregivers and brothers and sisters. In A. C. Crocker, H. J. Cohen, & T. A. Kastner (Eds.), HIV infection and developmental disabilities: A resource for service providers (pp. 43-51). Baltimore: Paul H. Brookes Publishing Co.

Hackl, K. L., Somlai, A. M., Kelly, J. A., & Kalichman, S. C. (1997). Women living with HIV/AIDS: The dual challenge of being a patient and caregiver. Health & Social Work, 22, 53-62.

Hanline, M. F., & Daley, S. E. (1992). Family coping strategies and strengths in Hispanic, African-American and Caucasian families of young children. Topics in Early Childhood Special Education, 12(3), 351-366.

Hirschfeld, S., Moss H., Dragisic, K., Smith, W., & Pizzo, P.A. (1996). Pain in pediatric human immunodeficiency virus infection: Infection and characteristics in a single-institution pilot study. Pediatrics, 98(3), 449-452.

Herek, G. (1990). Illness, stigma and AIDS. In G. M. Herek, S. M. Levy, S. Maddi, S. Taylor & D. Wertlieb, Psychological aspects of chronic illness: Chronic conditions, fatal diseases, and clinical care. Washington D.C.: American Psychological Association.

Johnson, J. P., Nair, P., & Alexander, S. (1987). Early diagnosis of HIV infection in the neonate. New England Journal of Medicine, 316, 273-274.

Kalichman, S. C., & Sikkema, K. J. (1996). People living with HIV infection who attend and do not attend support groups: A pilot study of needs, characteristics and experiences. AIDS Care, 8(5), 589-599.

Kalichman, S. C., & Sikkema, K. J., Somlai, A. (1995). Understanding AIDS: A guide for mental health professional. Washington, DC: American Psychological Association.

Kaplan, M. S., Marks, G., & Mertens, S. B. (1997). Distress and coping among women with HIV infection: Preliminary findings from a multiethnic sample. American Journal of Orthopsychiatry, 67, 80-91.

Key, K. K. & DeNoon, D., et al (1995). Isolation, guilt major challenges for families with AIDS. AIDS Weekly Plus, 20-22.

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.

Leserman, J., Perkins, D. O., & Evans, D. L. (1992). Coping with the threat of AIDS: The role of social support. American Journal of Psychiatry, 149(11), 1514-1520.

Lesar, S., & Maldonado, Y. A., (1997). The impact of children with HIV infection on the family system. Families in Society, 79, 272-279.

Leyser, Y. (1994). Stress and adaptation in orthodox Jewish families with a disabled child. American Journal of Orthopsychiatry, 64(3), 376-386.

Lynch, E. W., & Hanson, M.J. (Eds.) (1992). Developing cross-cultural competence: A guide for working with young children and their families. Baltimore: Paul H. Brookes Publishing Co.

Marder, R. & Linsk, N. L. (1995). Addressing AIDS long-term care issues through education and advocacy. Health and Social Work, 20, 75-80.

Martin, J. L., & Dean, L. (1992). Effects of AIDS related bereavement and HIV-related illness on psychological distress among gay men: A 7-year longitudinal study, 1985-1991. Journal of Consulting and Clinical Psychology, 61, 94-103.

Melvin, D. & Appleby, S. (1995). A sharing experience: development of a group for families affected by HIV infection. British Journal of Guidance & Counseling, 23(1), 7-17.

Melvin, D. & Sherr, L. (1995). HIV infection in London children--Psychosocial complexity and emotional burden. Child: Care, Health and Development, 21, 405-412.

McCubbin, H. I., Thompson, E. A., Thompson, M. S.(1993). Culture, ethnicity and the family: Critical factors in childhood chronic illnesses and disabilities. Pediatrics, 91(5), 1063-1070.

Miller, H. G., Turner, C. E. & Moses, L. E. (1990). AIDS: The second decade. Washington, DC: National Academy Press.

Miller, N. B. (1994). Nobody's perfect: Living and growing with children who have special needs. Baltimore: Paul H. Brookes Publishing Co.

Namir, S., Wolcott, D. L., & Fawzy, F. I. (1989). Social support and HIV spectrum disease: Clinical and research perspectives, Psychiatry in Medicine, 7(2), 97-105.

Namir, S., Wolcott, D. L., & Fawzy, F. I., & Alumbaugh, M. J. (1987). Coping with AIDS: Psychological and health implications. Journal of Applied Social Psychology, 17, 309-328.

National Commission on AIDS. (1992). The challenge of HIV/AIDS in communities of color. Washington, DC: National Archives and Records Administration.

NIMH (2002). Depression and HIV/AIDS. Retrieved from http://www.nihm.nih.gov/publicat/hivdepression.cfm on September 22, 2002.

Pearlin, L. I., & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior, 19(1), 2-21.

Ploughman, P. (1995/1996). Public policy versus private rights: The medical, social, ethical, and legal implications of the testing of newborns for HIV. AIDS & Public Policy Journal, 10(4), 182-204.

Ragsdale, D. & Morrow, J. R. (1990). Quality of life as a function of HIV classification. Nursing Research, 39, 355-359.

Rigoglioso, R. L. (1994). When HIV hits home. Harvard Health Letter, 19(6), 1-3.

Rogers, D. E. (1992). Report card on our national response to the AIDS epidemic--Some E's, too many D's. American Journal of Public Health, 82, 522-524.

Saddler, A. L., Hillman, S. B., & Benjamin, D. (1993). The influence of disabling condition visibility on family functioning. Journal of Pediatric Psychology, 18(4), 425-439.

Scofield, E. C. (1995). A model of preventive psycho-social care for people with HIV disease. Health and Social Work, 20, 102-109.

Seligman, M., & Darling, R. M. (1989). Ordinary families, special children. New York: Guilford Press.

Semple, S., Patterson, T., Nannis, E., Grant, J. (1995). HIV+ mothers: impact on family functioning. Conference: HIV infection in Women: Setting A New Agenda, Abstract TP474.

Semple, S., Patterson, T., Temoshok, L. (1993). Identification of psychobiological stressors among HIV-positive women. Women & Health, 20(4), 15-36.

Shelov, S. E. (1994). Editorial: The children's agenda for the 1990s and beyond. American Journal of Public Health, 84, 1066-1067.

Smith, M. & Rapkin, B. (1996). Social support and barriers to family involvement in care giving for persons with AIDS: Implications for patient education. Patient Education and Counseling, 27, 85-94.

Snowdon, A. W., Cameron, S., & Dunham, K. (1994) Relationships between stress, coping resources, and satisfaction with family functioning in families of children with disabilities. Canadian Journal of Nursing research, 26(3), 63-76.

Teel, C. S. (1991). Chronic sorrow: Analysis of the concept. Journal of Advanced Nursing, 16, 1311-1319.

Thorne, C. (1997). Children. AIDS Care, 9(1), 87-91.

Trachenberg, S. W., & Batshaw, M. L. (1997). Caring and coping: The family of a child with Disabilities. In M. L. Batshaw, (Ed.) (1997). Children with disabilities. Baltimore: Paul H. Brookes.

Tunali, B., & Power, T. G. (1992). Creating satisfaction: A psychological perspective on stress and coping in families of handicapped children. Journal of Child Psychology and Psychiatry, 34(6), 945-957.

Wiener, L. Riekert, K. A., Steinberg, S. M., & Pizzo P. A. (1997). Parental expressed needs: A preliminary guide for services and interventions. Journal of HIV/AIDS Prevention & Education for Adolescents & children, 1, 35-52.

Wiener, L. Riekert, K. A., Theut, S., Steinberg, S. M., & Pizzo P. A. (1995) Parental psychological adaptation and children with HIV: A follow-up study. AIDS Patient Care, 9, 233-239.

Wolf, T. M., Balson, P. M., Morse, E. V., Simon, P.M., Gaumer, R. H., Dralle, P. W., & Williams, M. H. (1991). Relationship of coping style to affective state and perceived social support in asymptomatic and symptomatic HIV infected persons: Implications for clinical management. Journal of Clinical Psychiatry, 52(4), 171-173.

Neena Khanna, University of Kentucky
Sonja Feist-Price, University of Kentucky

Dr. Feist-Price is an associate professor in the Department of Special Education and Rehabilitation Counseling. Her research focus is in the area of HIV prevention among persons at greatest risk both nationally and internationally. Dr. Neena Khanna is presently a graduate student of assistive technology in the Department of Special Education and Rehabilitation Counseling. She has a long experience of teaching graduate classes in special education at Kurukshetra University in India. She also worked as a Deputy Director (Academics) at the Rehabilitation Council of India.