Additional sources of support
Peer support. Peers provide many benefits for adolescents. They can be an important source of psychological support, helping to build confidence, resilience, reducing anxiety and promoting a sense of belonging. Because of their common experiences, peers can also help adolescents living with HIV to cope with fear, hopelessness, stigma and discrimination, and they can facilitate problem solving. Peer support can also be good sources of practical information, motivation and positive reinforcement for adherence to treatment, disclosure, sexual and reproductive health issues, and addressing mental health and substance use concerns.
There are a number of aspects to consider when establishing peer support services or groups. Support services should be available to all adolescents, acknowledging that not all will want to participate, as individuals are receptive to different types of support. Health providers can take the lead in initiating and facilitating peer support groups, ensuring the involvement of adolescents in planning and setting up the groups, as well as serving as peer educators and supporters. However, it is also important to emphasize that while they are important sources of support, peer supporters do not replace the roles and responsibilities of health care professionals. Nevertheless, with appropriate training, mentorship and supervision, peer supporters can provide important linkage between adolescents and the community to health care providers and services.
It is also essential to consider the level of resources that are available in the long term to ensure that support services are sustainable. When resources are limited, health care providers can refer their patients to peer support groups that already exist in the community or link with community-based organizations that support such activities. In developing such partnerships, reporting and referral mechanisms need to be established to handle sensitive or urgent issues. Health services can also develop innovative approaches to providing peer support despite tight budgets and space limitations. Such approaches could include: hosting community-based organization support groups on clinic grounds; inviting guest speakers to address certain issues with adolescent patients; hosting occasional educational programmes or special events; and exploring the use of technology including social media.
Involving families. For most adolescents, families remain the primary, trusted source of emotional, material and practical support. They have an important role to play in encouraging and supporting an adolescent to live positively with HIV, beginning with disclosure of the adolescent's HIV status if they have not yet done so. As children become adolescents, families and other caregivers are key partners with health providers in supporting a child's transition from paediatric to adult services.
However, the potential benefits of family support can only be gained when an adolescent agrees for their family to be involved. Health care providers should assess family dynamics and, when appropriate, encourage adolescents to allow family members or other supportive adults to play a role in supporting their positive living. As part of goal setting and planning with adolescents, they should be allowed to specify ways in which they want their families to support them and issues they prefer to address on their own. In general, health care providers should always respect an adolescent's wishes in this regard.
Health care providers must also be alert to situations where there is a potential for violence against the adolescent, which is an issue in some families. In these cases, social and protective services must be engaged to ensure that the adolescent is safe and remains in care. To the extent possible, families should be supported to contribute to the well-being of the adolescent, provided with resources to assist them in adjusting to their new roles in the adolescent's life, and referred for additional counselling and support, as required.
Involving the education sector. Students living with HIV have a right to equal access to education and the opportunities that education creates. Being able to remain in school and pursue an education represents normalcy and the maintenance of hopes and ambitions for the future. It also allows adolescents to acquire the life skills they need to manage peer pressure, form relationships, make good decisions and achieve their goals. Schools can also serve as important partners for health services in meeting the needs of adolescents for information, testing, support and referral for appropriate services.
Health care providers and educators must ensure that students know their rights with respect to education:
- Schools may not exclude anyone because of their HIV status.
- There should be no forced disclosure of a student's HIV status.
- Teachers have an obligation to treat students living with HIV as they treat all students: with dignity and respect.
The barriers to education faced by adolescents living with HIV are often related to high levels of stigma and discrimination on the part of fellow learners as well as school staff. Forced disclosure and breaches of confidentiality may be caused inadvertently by standard admissions procedures, accidentally when information is shared about a student's absences from school, or intentionally by school staff or other students. School administrators have a duty to make sure that mechanisms are in place to reduce or eliminate these barriers for adolescents living with HIV, and to create more supportive school environments for them.