As part of the review for the background question on adolescents, a group of experts was convened to propose actions for optimizing adolescent engagement in TB care. The proposed actions focused on two areas: reforming current practices that are harmful to adolescents with TB; and developing an adolescent-specific plan within each NTP to provide high-quality adolescent-centred TB services.
Box 7.6 summarizes the proposed interventions.
Adolescents on treatment for TB disease are at risk for poor adherence in terms of missed doses and loss to follow-up. Predictors of poor treatment adherence for drug-susceptible TB include TB/HIV coinfection, age 15–19 years, prior TB treatment and male gender.
The review identified specific challenges of providing TB care to adolescents around substance abuse, late presentation to care and treatment adherence. Adolescence is a time when individuals may engage in reward-seeking and risk-taking behaviours, including substance use. This may increase the risk of developing TB disease, more severe disease or more unfavourable treatment outcomes. Further research is required to better understand how to co-manage TB and substance use in adolescents.
Stigma and hierarchical models of care such as facility-based treatment may undermine adolescent agency.27 Threats to social networks related to TB and its treatment and the increase in mental health challenges may impact adolescent resilience.28 Some adolescents with TB, however, demonstrate resilience by forming strong relationships with peers who are on treatment or by finding a sense of purpose or meaning from their illness experience (see web annex 4).
Adolescents experience disruptions to their education due to TB and its treatment. The time needed for facility-based treatment support can interfere with education, and the need for education may in turn disrupt engagement with TB services. Disruption or delays in education may be further affected by prolonged isolation or hospitalization. As a result, TB and associated treatment may have a significant impact on adolescents’ future livelihoods (see web annex 4).
Adolescents with TB may experience threats to their human rights, including rights to safety, basic needs, access to health care without discrimination, protection against unnecessary hospitalization, and benefit from scientific progress. Adolescents and their families may incur devastating financial impacts, loss of income and food insecurity from TB and its treatment. Social and economic vulnerabilities increase the risk for poorer treatment outcomes, including loss to follow-up, treatment failure and death.
Prolonged isolation and hospitalization have substantial psychosocial and emotional impacts on adolescents, for whom peer and family relationships are critical from a developmental standpoint. TB-related stigma impacts on adolescents’ well-being and ability to engage with TB services. Family and peer relationships may, in turn, be disrupted or strained by isolation, separation or the effects of stigma.
Adolescents are at risk of TB infection, progression to TB disease, and loss to follow-up from TB care. Adolescents with MDR-TB or with TB/HIV coinfection are at particular risk of poor treatment outcomes, including death. Adherence, stigma, mental health and quality of life are impacted negatively by adverse effects of TB treatment, especially second-line treatment.
Adolescents with TB often present with bacteriologically infectious disease typical in adults (e.g. cavities seen on CXR) and therefore pose a high risk for transmission in households and congregate settings such as schools. Adolescents face unique challenges due to peer pressure and fear of stigma, increasing prevalence of comorbidities such as HIV, and risk behaviours such as use of alcohol, tobacco and other substances. People aged 10–19 years need adolescent-friendly services that include relevant psychosocial support and minimal disruption of education (5).
Palliative care for children with TB is similar to that for adults, but applied to the specific needs of this age group. While the definition and principles of palliative care described above apply to the entire lifespan, paediatric palliative care requires attention to physical, developmental, psychosocial, ethical, spiritual and relational phenomena unique to children and their families and caregivers (203). The following should be considered: