Mental Health Condition of Children Infected with HIV/AIDS

Introduction

A major public health concern that has reached a crisis proportion among youth is HIV (Human Immunodeficiency Virus) infection, which causes AIDS (Acquired Immunodeficiency Syndrome). HIV poses a serious threat worldwide, and it prompts biological, psychological, and social issues among children and teenagers. Children who are HIV-positive and AIDS-positive are becoming more prevalent. United Nations Programme on human immunodeficiency virus [HIV]/ acquired immunodeficiency syndrome [AIDS] (UNAIDS) reported about over two million children to have been infected with HIV. Due to vertical transmission, children are considered to be the source of nearly four percent of the 2.4 million HIV infections in India. Fresh HIV infections among children continue to be diagnosed even after a strong emphasis on the prevention of parent-to-child transmission leading to a notable reduction in the vertical transmission.

In 2008, an estimated 34.4 million people worldwide were reported to be living with HIV. Of these, 2.1 million constituted children under the age of 15 years.¹ An overall prevalence of 0.31% has been reported in India.²

Neurological and Neurodevelopment Sequelae of HIV Infection

Among children, the most severe and early indicators of HIV infection are neuropsychological, neurological, as well as developmental disorders. According to earlier research on HIV's central nervous system (CNS) manifestations, 40 to 90 percent of infected children exhibited some sort of neurological manifestations.³

Prospective researches have reported significant indications of neuro-developmental delays ranging from 8 to 13% in HIV-positive children and 19-32% in children who satisfied the diagnostic criteria for AIDS.⁴ Furthermore, a direct relationship was observed between the intensity of neuropsychological and neurological problems and the severity of HIV-related illness. Additionally, it was discovered that children with the most profound developmental delays had higher viral loads and exhibited fewer neurological health symptoms.⁵ The neurodevelopment patterns of PE (Progressive Encephalopathy) and static encephalopathy are relatively different from one another. Fifty percent of pediatric AIDS patients experience PE related to HIV.⁶ HIV directly affects pediatric patients' neurodevelopment in a number of ways, including poor expressive & receptive language development, delayed developmental milestones, and impaired motor skills.⁷

Emotional and Behavioural Problems

In general, it has been observed that children with chronic illnesses are more likely to experience psychological issues such as anxiety, depression, and feelings of isolation.^8,9 In children born to pregnant infected mothers, the prevalence of psychiatric disorders ranges from 55% to 61%. Anxiety disorders are the most prevalent, followed by conduct disorders, attention deficit hyperactivity disorders, mood disorders, as well as oppositional defiant disorders.¹⁰ About 6.17 psychiatric cases per 1000 person-years were reported in a prospective cohort study aimed at examining the long-term outcome among infants born to HIV-positive parents and infants born to HIV-negative parents. Compared to the general pediatric population, where the occurrence was 1.70 cases per 1000 person-years, this was considerably higher. Additionally, it was observed that being aware of one's HIV seropositivity status as well as having gone through a major life event, were both substantially linked to a higher risk of being admitted to a mental health facility.¹¹

Stigma Secrecy and Disclosure

HIV/AIDS is distinct from other chronic or terminal illnesses due to the stigma attached to it. The stigma attached to AIDS and the "conspiracy of silence" that surrounds many HIV-positive children as well as their families are all too common (Figure 2).¹² Many a times, illness is kept a secret. A troubling effect of "conspiracy silence" is that the families may withdraw, socially isolate themselves, and emotionally withdraw from conventional support networks. Stigmatization from family, friends, and their children further complicates the situation when parents delay disclosing the children's and their own AIDS/HIV status. Many parents would rather keep their diagnosis and that of their child’s a secret from friends, family, and the public, when faced with rejection from society. Families may be prevented from obtaining the required treatment, looking for help with permanent planning for both infected and affected children, as well as attaining necessary forms of social support due to self-imposed secrecy as well as reactions to social stigma.

Adolescence Issues

HIV infection significantly complicates the typical developmental obstacles of adolescence for children infected with the virus, such as sexuality, puberty, and the need to "fit" or be "normal." The long-term consequences of HIV infection on growth as well as pubertal development presents serious obstacles for young individuals living with the disease into their adolescent years. However, as HIV-positive children enter adolescence, as well become sexually active, they need substantial assistance in navigating the challenging issues of balancing their healthy sexual development with their HIV infection. The American Academy of Pediatrics Committee on Pediatric AIDS states that, “adolescents should be informed of their diagnosis at all times”. Adolescents need to be fully informed about their health in order to make informed choices about their behavior and future paths. Young individuals will often need continuous education regarding the daily implications of living with the virus and how it will impact their social decision-making. These choices include taking care of their own health, telling friends and significant others what they are thinking, and choosing healthy sexual alternatives. As the young person moves through various phases of life, they will come to new and distinct insights regarding their diagnosis. Adolescents experience multiple obstacles, such as the growing expectations for them to take charge of their own health care, the influence of their illness on their developing sexuality, and the necessity for freedom.

Death and Bereavement

Children who have AIDS must deal with the physical and psychological effects of the disease as it worsens. At this point, family members become overwhelmed and find it difficult to talk to the child about matters pertaining to death and prognosis. Children and adolescents must deal with the death of their loved ones who have AIDS/HIV in addition to their own mortality. Children and youth with AIDS/HIV face many challenges, one of which is accepting and comprehending their own potential death. A child's level of awareness of their own mortality, along with their coping mechanisms and emotional and cognitive development, is often determined by how mature they are. Young children may not understand that death is inevitable, while elementary-aged children may become more conscious and anxious, and teenagers may experience significant existential crises. A child can express his or her fears about dying and being separated from parents with the help of sensitive psychological intervention. At this point, pain management needs to receive extra consideration, especially for young children who have trouble effectively communicating with caregivers.

Psychosocial Interventions

When a family has children affected by HIV/AIDS, they typically face various challenges such as financial strain, social distancing, medical needs, and crisis management. To enhance their quality of life, multidisciplinary interventions are provided to the family. Family centered approaches have been promoted as a means of addressing cultural factors that affect the entire family as well as family stressors and adaptation. Together along with connecting families to community resources and services like medical, mental health, and social welfare services, they also offer the child and his or her siblings the proper support, and through case management provide respite care. The concept of empowerment must be the starting point for therapeutic interventions with families dealing with HIV/AIDS. The HIV diagnosis results in the loss of friendship groups, family get-togethers, and customary healing rituals. Families may receive assistance in rebuilding the family support that was previously available. Families frequently require assistance in creating new customs to include individuals in need of support, especially during the final stages of the disease. As was previously mentioned, children who are HIV positive often exhibit a variety of mental health issues that call for extensive treatment. When it comes to the care of children infected with HIV, therapeutic support is most important. These children, along with their parents and families, need cognitive and supportive therapy as they are particularly susceptible to mental health issues, separation, and loss.

Conclusion and Recommendation for Future Research

The low coverage of ANC (Antenatal Care) and PTCT (Parent-To-Child Transmission) prevention services in India means that, despite major advancements in HIV treatment and care, children in the country are stillborn or infected with HIV. Furthermore, HIV/AIDS has evolved from an acute disease with a significantly shorter life span to a condition that shares many traits with a serious chronic disease due to advancements in medical treatment. Thus, treating HIV-positive children presents substantial difficulties for medical professionals and mental health specialists. Considering the numerous psychological strains and problems that HIV-positive children and adolescents confront, comprehensive mental health care services continue to be essential. Regarding when to inform children of their HIV-positive status, there is a lack of agreement among practitioners and parents regarding HIV/AIDS infection disclosure. Additionally, the majority of the guidelines focus on the aspects of illness and treatment compliance. Following the disclosure of the HIV diagnosis to the affected child, the healthcare provider must assess the child's functioning level, behavioral changes, and psychological and emotional adjustment at each follow-up visit. Additionally, since there is currently no literature addressing the psychological effects of post HIV disclosure on HIV/AIDS-positive children, a clear, developmentally and culturally appropriate framework must be developed. Caretakers must address the emergence of sexuality issues in children as they enter the adolescent stage since the parents find it uncomfortable to do so. With adolescents, the care provider should discuss sexual development, issues related to sexual behaviors, safe sex practices, reproductive health, and relationship problems. This will discourage adolescents from engaging in high-risk behaviors and promote safe, healthy sexual practices. This can be accomplished by incorporating life skills training into the adolescent population for their voluntary personal development.

Conflict of Interest

None