The meaningful involvement of adolescents is an integral component of effective HIV care. It is essential that their involvement is encouraged and supported. There are a number of ways that adolescents can be involved, all of which can influence both the quality of services provided as well as health outcomes. Adolescents have important contributions to make in the policy-making, planning, implementation and monitoring of programmes and services. In all aspects of health service delivery, adolescents should be viewed as equal partners and stakeholders. In order to participate in a meaningful way, adolescents should be given opportunities, empowered and trained as effective peer educators, counsellors, trainers and advocates. With support to acquire the necessary skills, adolescents are leading advocacy efforts and policy- and decision-making processes at the country, regional and global levels.
It is useful to understand the importance of youth participation in terms of three main relationships between services, programmes, policy-makers and adolescents. All those involved with adolescents should:
- work with and for adolescents as beneficiaries;
- engage with adolescents as partners;
- support adolescents to take initiatives and to serve as leaders.
This approach focuses on acknowledging and mobilizing the value, strengths, contributions and talents of adolescents rather than concentrating solely on their needs or challenges.
Adolescents have the capacity to identify approaches or solutions that will best accommodate their personal circumstances or needs. It is the role of the health provider to facilitate them to make decisions about their own health care. This can encourage their continued engagement with care, with the ultimate goal of self-management, as part of the transition to adulthood. Adolescents have a right to self-determination and to participate in decisions about their health care, and health providers have an obligation to make sure that opportunities are available for adolescents to exercise these rights. Often, adolescents will not be aware of their rights related to participation. Health services should promote these opportunities and encourage adolescents to be part of the many processes and decisions that affect their lives, e.g. through posters, peer educators and other local channels of communication.
Examples of how adolescents and young people are being involved in the HIV response
Because adolescents usually have the best knowledge about their lives and their needs, upholding their participation rights has benefits for many stakeholders: knowing how young people perceive problems and understanding the reasons behind certain behaviours enables providers, programmes and services to be more responsive to the needs of the population they serve. In turn, this supports the provision of sustainable, acceptable, locally appropriate and more effective solutions, which ensures that more adolescents will seek and remain engaged in care. The importance of listening to, learning from, and involving service users is also recognized as a way to build empowering partnerships with the communities in which adolescent clients live. Ultimately, involving adolescents in meaningful ways can have a dramatic impact on their ability to live positively with hope for the future, their sense of belonging to a mutually supportive community, their confidence and self-esteem, their knowledge and skills, and their opportunities for future employment.
The success of interventions that facilitate the involvement and participation of adolescents is not only measured by effectiveness of outcomes. It is also important that the process and the mechanisms employed to engage adolescents are assessed, as well as the degree to which they are engaged. It is not enough to create opportunities for adolescents to participate in planning, implementation and decision-making. It is equally important that adolescents’ contributions are viewed as meaningful – by the adolescents as well as by health providers; their opinions must be taken seriously and their involvement must have influence and be allowed to provoke change.
Ensuring the meaningful involvement and participation of adolescents through formal mechanisms is the responsibility of those at the national to service delivery levels. Ministries of health should validate the importance of involving adolescents through inclusion and recognition in national plans. Health planners and providers are also instrumental in developing and adopting policies that facilitate strategies within health services to ensure adolescent involvement. Community-based organizations also have an obligation to develop mechanisms for greater and more meaningful involvement of their adolescent clients. At all levels, these actions require inputs from adolescents themselves and should be reinforced by the inclusion of adolescent involvement as a component of health provider training on adolescent health.
For meaningful involvement of adolescents, it is essential to provide capacity building activities and opportunities for developing leadership skills. Adolescents should be empowered to participate through training, mentorship, investment of resources and opportunities for further education. This is mutually beneficial for both the adolescent and the instructor/mentor who are gaining a better understanding of adolescents and developing their own capacity building skills.