RetourIn high TB burden countries, the capacity to manage TB in children and adolescents is often centralized at the tertiary or secondary level of health care rather than being decentralized at the primary health care level where children and adolescents with TB or TB exposure commonly seek care (67, 68). Care at higher levels in the health system is often managed in a vertical, non-integrated way. Children and adolescents with TB may go undetected because of missed opportunities for contact investigation, TB prevention, detection and care, and as a result of weak integration of child and adolescent TB services with other programmes and services – especially the integrated management of childhood illness (IMCI), malnutrition and HIV services. If not addressed, such access challenges contribute to preventable delays in diagnosis and treatment, which may lead to increased disease severity, suffering and mortality (69).
An important step towards improving access to TB prevention and the management of TB in children and adolescents is the provision of decentralized, family-centred integrated care (67). Integrated, person-centred care and prevention is a key pillar of WHO’s End TB Strategy and aims to ensure that all people with TB have access to affordable high-quality services according to their needs and preferences (5). This is further underpinned in the 2018 WHO roadmap towards ending TB in children and adolescents (67), which calls for the implementation of integrated family- and community-centred strategies
This section focuses on models of care to increase access to TB services for children and adolescents through family-centred, integrated care. Family-centred models of care refer to interventions selected on the basis of the needs, values and preferences of the child or adolescent and their family or caregiver. This can include health education, communication and material or psychological support. Integrated services refer to approaches to strengthen collaboration, coordination, integration and harmonization of child and adolescent TB services with other child health-related programmes and services. This can include integration of models of care for TB screening, prevention, diagnosis and treatment with other service delivery platforms for maternal and child health (e.g. antenatal care, integrated community case management, IMCI) and other related services (e.g. HIV, nutrition, immunization). Other examples include the evaluation of children and adolescents with common comorbidities (e.g. meningitis, malnutrition, pneumonia, chronic lung disease, diabetes, HIV) for TB and community health strategies that integrate child and adolescent TB awareness, education, screening, prevention and case-finding into training and service delivery activities.
The following are the WHO recommendations on decentralized and integrated family-centred models of care for TB services for children and adolescents (70).
Comments:
- These recommendations are applicable to children and adolescents with signs and symptoms of TB in terms of the impact on case detection. They also apply to children and adolescents who are exposed to TB (TB contacts) and who are eligible for TB preventive treatment (TPT) in terms of the impact on provision of TPT. Children and adolescents with signs and symptoms who need evaluation for TB disease may also have a history of exposure to TB (TB contacts). Children and adolescents who are TB contacts who do not have signs and symptoms need to be evaluated for TPT eligibility.
- The recommendation on decentralized services refers to enhancing child and adolescent TB services at peripheral levels of the health system that are closer to the community, and not to replacing specialized paediatric TB services at higher levels of the health system.
- Decentralization should be prioritized for settings and populations with poor access to existing services and/or in areas of high TB prevalence.
- Family-centred, integrated approaches are recommended as an additional option to standard TB services (e.g. alongside specialized services that may have a limited level of integration with other programmes or linkages to general health services).
- Family-centred care is a cross-cutting principle of childcare at all levels of the health system.
These approaches on decentralization and family-centred integrated care aim to bring TB services closer to where children, adolescents and families live. As the recommendations were published in 2022 (70), evidence on the best ways to implement these recommendations is emerging, and national programmes are encouraged to document examples of best practice in this area.
Decentralization includes the provision of access to or capacity for child and adolescent TB services at a lower level of the health system than the lowest level where it is currently routinely provided. In most settings, decentralization applies to the district hospital level (first referral level), the primary health care level or the community level. Interventions to facilitate decentralization include capacitybuilding of various cadres of health-care workers, access to diagnostic services, availability of TB medicines for children and adolescents, and follow-up of children and adolescents with TB or on TPT.
Since children and adolescents who are unwell commonly seek care at the primary health care level, where TB services are not always available, decentralization and integration of such services using a family-centred approach has the potential to improve access to care, especially for children and adolescents who do not need referral to a higher-level facility. The objectives of decentralization are closely linked to the aspirations of universal health coverage (all people have access to the health services they need, when and where they need them, without financial hardship), which is a strategic priority for Sustainable Development Goal (SDG) target 3.8 (71).
Decentralization of care at the community level has the following advantages:
- increased equity via improved access to health services;
- provision of TB care at the same time and in the same place for all family members;
- savings in time and money when care is provided closer to home;
- continuity of care between the person’s home, community and local health centre;
- increased community support, which may lead to better adherence to treatment and can be instrumental in overcoming barriers to long-term care, including treatment adherence, transportation costs, missing school, and loss of wages during sickness and clinic visits.
Other potential benefits of decentralization in the context of TB include increased treatment coverage in children and adolescents, reduced time to diagnosis and time to treatment, improved treatment success among children and adolescents started on TB treatment and TPT initiation, and reduced transmission (72-75).
Regarding family-centred integrated care, many opportunities exist for the integration of TB services. For instance, opportunities for the integration of TB services at the health facility level exist in outpatient departments; nutrition, HIV, maternal and child health clinics (e.g. prevention of mother-to-child transmission, antenatal care, immunization clinics); general paediatric, adult TB and chest clinics; and inpatient departments. If resources are available, the NTP may consider implementing providerinitiated TB screening in relevant child health entry points, and linkages to diagnosis or treatment. If resources are limited, entry points or services designed to care for sick children could be prioritized.
The WHO policy on collaborative TB/HIV activities recommends the delivery of integrated TB/HIV services, preferably at the same time and location (76). The policy further recommends that HIV programmes and NTPs should collaborate with other programmes to ensure access to integrated and quality-assured services, including for children and adolescents. Quality statement 1.8 of the Standards for improving the quality of care for children and young adolescents in health facilities recommends that all children at risk for TB or HIV are correctly assessed and investigated and receive appropriate management according to WHO guidelines (77).
Many health-care providers at the primary health care level in high TB burden countries have been comprehensively trained on assessing and caring for children with pneumonia, diarrhoea and malnutrition using IMCI and integrated service delivery packages on community case management. These packages are centred on the most common childhood illnesses, such as pneumonia and malnutrition, which have a clinical presentation similar to TB (78, 79). Therefore, they offer an opportunity to strengthen integrated symptom-based screening for TB in sick children aged under 5 years. Specifically, the 2014 WHO IMCI chart booklet (79) caters for referral of children with a cough for more than 14 days, assessment of TB infection among children with acute malnutrition, and TB assessment and TPT among children living with HIV (78, 79).
Several considerations for the implementation of decentralized and integrated family-centred models of care for children and adolescents are included in the WHO operational handbook on tuberculosis. Module 5: management of tuberculosis in children and adolescents (69).
Treatment support
Implementation of the recommendations related to treatment support should enable the provision of people-centred TB services. Treatment adherence interventions that may be offered for people on TB treatment may include material support (e.g. food, financial incentives, transport fees), psychological support, tracers such as home visits or digital health communication (e.g. SMS, telephone) and medicine monitoring (15, 16). Interventions should be selected on the basis of assessment of the individual’s needs and preferences as well as available resources. It is important to involve local schools, including educating teachers and other staff about TB and providing accurate information about infectiousness, the needs of children and adolescents with TB or TB/HIV coinfection, the necessity for frequent visits to clinics, and the importance of taking medicines regularly. This may help to reduce stigma in schools and minimize time out of education. Faith-based organizations and other community groups can also be involved in supporting children and adolescents with TB and their families.
Socioeconomic impact of TB on children, adolescents and families
TB commonly affects people of lower socioeconomic status and worsens poverty through high costs related to treatment and reduced household income. Most children with TB develop it after contact with an adult family member with active infectious pulmonary TB (PTB). A high number of TB notifications in children indicates an ongoing adult epidemic (80). TB in the family threatens household income and financial security.
Some examples of the impact of TB on children include dropping out of school following parental bereavement from TB or leaving school to go to work to maintain household income (81). TB in childhood or adolescence may also disrupt or delay schooling and impair growth (82). A recent scoping review reported that time spent caring for a child with TB had impacts on family spending, nutrition and education, and overall reduced household income – all of which were associated with lowered family well-being.8 In addition, perceived and enacted stigma had practical implications for TB diagnosis, clinic attendance and treatment, and other psychosocial impacts beyond stigma, including breakdown of parental relationships. School disruption, food insecurity and a lack of social protection have also been reported for children and adolescents with TB based on an analysis of national TB patient cost surveys.⁹