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Table 2 Illustrative case vignettes of families affected by TB, highlighting the inequality in existing health provision. Key issues raised by the vignettes are summarized on the right

From: Why the Convention on the Rights of the Child must become a guiding framework for the realization of the rights of children affected by tuberculosis

Tuberculosis – a family disease across the world
Struggling health and social care system Effective health and social care system Key lessons illustrated
Six-year-old Jamil lives with his mother and 2-year-old sister, Zahra, in a rural village in a low income country. Jamil has been coughing for weeks. His mother has taken him to the traditional healer, but he worsens. She takes him to the nearest clinic where the healthcare worker gives antibiotics with no improvement. Eventually he is referred to the nearest hospital where an x-ray is taken and he is diagnosed with pneumonia and further antibiotics are prescribed. Repeated sputum examinations show no signs of TB but given the lack of response he is started on the standard four-drug TB regimen. He continues to deteriorate and so the health care workers explore Jamil’s case further. They realize that Jamil’s father had similar symptoms following his release from prison many months ago and was eventually diagnosed with multidrug-resistant TB and is an inpatient at the national sanatorium. Jamil is therefore referred three hours away to the national children’s hospital, where he starts MDR-TB treatment with daily injections and tablets. His mother, already struggling with an absent father does not have the means to visit him. Jamil will remain an inpatient for 8 months, separated from his family. His schooling stops and he gradually loses his hearing due to the medication he is receiving. Shortly after Jamil is admitted to the national children’s hospital, his younger sister, Zahra, becomes lethargic and spikes fevers. One day, his mother is unable to wake her up and she is taken by cart to the nearest hospital. The doctors suspect TB meningitis and start her on treatment, but she dies two days later. Six-year-old Jamil lives with his mother and 2-year-old sister, Zahra, in social housing in a large city of a high income country. Public health officials visit the family as part of a contact tracing program because their father was recently diagnosed with multidrug-resistant TB following his release from prison several months ago. Jamil’s youngest sister Zahra is 2 years old. Although she appears healthy and her investigations are normal, given her young age and close contact with a known MDR-TB case, her team of doctors start her on medication to prevent her from developing TB disease. Jamil has no symptoms yet, but the public health team request a chest radiograph and other tests, the results of which suggest he has early TB disease. Given his father is known to have MDR-TB, he is admitted to the regional children’s hospital where he undergoes paediatric-specific investigations for TB and he is treated with injections and tablets. He receives education from the hospital teaching team whilst an inpatient. His case is discussed at the multidisciplinary meeting to help his mother access benefits enabling her to visit him in hospital. Once his treatment regime has been stabilized, an arrangement is made between the hospital and the school so that he returns to live at home and attends the hospital daily after school. Following questions raised by Jamil and his family, the public health authorities liaise with the school to reassure and educate that there is no risk of transmission to others as he is on treatment and not coughing. In view of the potential side effects of the drugs that Jamil is taking, his hearing is tested regularly. After 2 months of treatment, there are early signs that his hearing is affected so his medication regimen is changed before he experiences hearing loss that might compromise his ability to communicate. As his disease was identified early, he is treated for a shorter duration of therapy then is required for adults with extensive disease. •  TB disproportionately affects marginalized populations across the world – e.g. those living in poverty, difficult access to healthcare, migrants and refugees. •  Effective public health mechanisms and infection control measures are necessary to identify linked cases and prevent further transmission. •  Contact tracing can lead to identification of contacts eligible for therapy to prevent TB disease developing. •  Contact tracing can lead to early detection and treatment of paediatric TB cases. •  Understanding the differences between adult and paediatric TB is key to diagnosis and treatment initiation. •  Continued education is possible and requires coordination of health, education, and social sectors. •  Even when separation of children and their families during treatment is necessary, the impact can be minimized and the duration limited to the absolute minimum. •  Children can and should be involved in and understand their own care and be communicated with in an age-appropriate manner. •  Education of communities and increased awareness around TB will reduce stigma, diagnostic delays and improve access and uptake of TB services. •  Appropriate provision of care to children affected by TB can prevent disability and death.