RESUMO
SETTING: Referral hospital for drug-resistant tuberculosis (TB) in KwaZulu-Natal, South Africa. OBJECTIVES: We conducted interviews with primary care givers of children admitted with multidrug-resistant TB (MDR-TB) during a 3-month period in 2015 to identify broader household challenges. RESULTS: We interviewed 26 care givers, most of whom were women (85%). Most households had been decimated by TB/MDR-TB and human immunodeficiency virus (HIV) infection, and were dependent upon government grants. In 54% of cases, parents were absent due to illness or death, or their whereabouts were not known. The median age of the children treated for MDR-TB was 8 years (range 2-14); 72% were HIV-co-infected. Four themes emerged in the interviews: 1) the psychosocial impact of hospitalisation and separation on the child and the household, 2) the psychosocial impact of MDR-TB on children and 3) on care givers, and 4) the economic hardship of affected households. Children had to contend with multiple diseases and medications, and personal family losses; they faced behavioural, emotional and cognitive difficulties. Care givers were often anxious and concerned about the child's longer-term prospects, while the cost of hospital visits exacerbated the pre-existing economic vulnerability of affected households. CONCLUSION: The socio-economic impact of childhood MDR-TB reverberates beyond diseased children to their affected households. Enhanced social protection, psychosocial support and treatment literacy would create the foundations for family-centred care.
