Implementation guidance for health providers and planners

Psychosocial well-being

A person's physical health, mental health, emotional life (feelings, thoughts, beliefs, attitudes) and social life (relationships, attitudes, cultural values and the influences of family, school, peers and community) all affect psychosocial well-being. Adolescents living with HIV are also influenced by their capacity for independence and self-management; understanding and knowing how to limit and cope with stigma; vulnerabilities linked to orphanhood, poverty, illness and abuse; coping with death and bereavement, educational challenges/cognitive impairment; and disclosure to others for emotional and practical support.

Adolescents living with HIV experience numerous psychosocial stressors over an extended period of time. These may be related to the initial diagnosis and disclosure of their HIV status; the emotional and financial strain of long-term care and adherence to treatment; coping with stigma and discrimination; distrust of health care providers; fear and experience of legal consequences and abuse/violence (in the case of many key populations); bereavement related to the death of loved ones or apprehension about their own possible death; and concerns around emerging sexuality and desire for relationships and families of their own.

Providing psychosocial support to adolescents living with HIV is essential. All adolescents need support coping with developmental issues, such as taking more responsibility for themselves, wanting to be accepted and to fit in with peers, and learning to navigate their emerging sexuality and new intimate relationships. Adolescents living with HIV may experience additional HIV-related stressors and, in some cases, additional vulnerabilities and challenges.

Psychosocial support can help patients as well as their caregivers gain confidence in themselves and their coping skills. It can increase patients' understanding and acceptance of comprehensive HIV care and support services, encourage adherence to HIV treatment, and equip them with skills to make informed secondary prevention decisions. Such support can also help prevent adolescents living with HIV adopting risk-associated behaviours or from developing more severe mental health problems. Caregivers also benefit from support that acknowledges the stress they are under and validates their concerns about their children or charges, while enabling them to learn how to cope with the adolescent's developmental and health needs.

Mental health. Mental illness can take many forms, especially in adolescents as they go through emotional, social and physical changes. The degree and impact of mental health problems on adolescents' lives varies, and can range from acute to chronic and from mild to severe. Most commonly, adolescents experience depression and anxiety disorders. Other mental health issues that are prevalent in adolescents include behavioural and psychiatric problems such as attention deficit hyperactivity disorder. Alcohol and other substance use, which is common during adolescence, can contribute to increased risk of mental health problems. Additionally, adolescents affected by trauma – e.g. rape, abuse or other forms of violence – can experience long-term anxiety and depression in addition to the physical effects of trauma.

Adolescents living with HIV have additional risk factors that compound their susceptibility to mental illness. Many may experience increased vulnerability due to loss of family and may have to live independently, with relatives or in care. These adolescents are often exposed to environments of poverty and violence and consequently experience other traumatic events. Living with a chronic illness, particularly one associated with stigma, discrimination and social isolation, further impacts on one's mental health. Additionally, prolonged exposure of the central nervous system to untreated HIV during developmental years can cause neurocognitive disorders such as impaired motor skills, language difficulties and verbal and memory impairment.

It is important to address mental health issues in adolescents living with HIV, as there is a risk of delayed initiation and poor adherence to ART. Some providers may find that mental illness increases adolescents' vulnerability to engage in risk-related behaviours, including substance use or risk-associated sex. If not addressed, mental health issues can impact upon an adolescent's ability to work, gain an education, engage in health care and/or establish social relationships. Health care providers play an important role in early detection of mental health problems and provision of timely and appropriate support and referral.

Independence and self-management. Emerging autonomy is a key aspect of adolescence. It is especially important to encourage independence and self-management in adolescents who are living with HIV, as they need to be able to take responsibility for their lives and their HIV care by the time they are adults. When adolescents are supported to live independently, find ways of supporting themselves, pursue their studies or other goals, interact with health providers and take responsibility for themselves, they are more able to adhere to treatment, remain engaged in HIV care, seek psychosocial support, cope with stigma, and face the other challenges of adolescence and demands of everyday life.

Stigma. Stigma can affect an adolescent's ability to live positively with HIV. It is often linked with discrimination, social isolation and loneliness. Adolescents from key populations often are more vulnerable to stigma and discrimination than others, as they are more likely to be blamed for their status. Many not only face stigma related to their behaviours but also possible prosecution if these activities are illegal.

Stigma affects an individual's sense of self-worth and self-esteem, the ability to seek emotional and psychosocial support through disclosure to others, the confidence to adhere to treatment at school or in the workplace, and the willingness to seek health services on a continual basis. Stigma can be directed at a another person, generated by the judgments of others; it can take the form of self-stigma when a person internalizes and accepts the stigmatizing attitudes of others toward him or herself - often with damaging effects on feelings of self-worth. Understanding and learning how to deal with stigma is one of the skills that adolescents living with HIV require as they move into adulthood.

Vulnerability. Adolescents living with HIV are vulnerable to poverty, illness and abuse. When an adolescent has lost one or both parents, they face the prospect of enormous economic hardship, possibly including loss of property or inheritance. As a result, they may be forced to work in jobs that exploit child labour, they may be subjected to sexual abuse and they may have to care for younger siblings. They may also be forced into early marriage. Health providers can assess the vulnerability of adolescents who have been orphaned and ensure they are referred to social services that are positioned to address the needs of children and young people who may be experiencing abandonment or abuse.

Adolescent members of key populations are particularly vulnerable to violence, abuse, social marginalization and criminalization. They are often fearful and reluctant to disclose personal information to adults in health or other support services. Health providers must use effective adolescent-friendly approaches to engage these adolescents, be attentive to signs of trauma and refer them for protective services in addition to routine health and psychosocial support services.

Health care providers must make sure that adolescents who are vulnerable for any reason know their rights – to health, protection and self-determination – so that they can advocate for themselves and seek the types of support they are entitled to.

Death and bereavement. Adolescents living with HIV may have more experience with death and bereavement than peers whose families have not been directly affected by HIV. They may have lost a parent or sibling to AIDS, and they may have many fears about their own eventual death that they want to discuss. These perceptions or experiences are unique to each individual and often involve various types of responses, which can be physical, emotional, behavioural, cognitive, spiritual or social.

Grieving adolescents must be able to discuss and acknowledge their loss and must have an opportunity to release their grief. They should also be encouraged to verbalize their fears, and their feelings should be validated and discussed, not dismissed or minimized.

Disclosure. When adolescents living with HIV can disclose their status to a trusted family member or friend, they are more able to live positively with HIV. While adolescents may be fearful of potential rejection, disclosure creates a network (even if it is very limited) of people who can provide emotional and practical support. Health providers can help adolescents decide who to disclose to, how, when and where; to weigh the advantages and disadvantages of disclosure; and to help them anticipate likely responses. This important issue is covered in a dedicated section of this tool.