Background It is recognised in the western world that children with life-threatening or life-limiting illness benefit from sharing of information about their illness in an age-appropriate way, as this enables children to feel empowered, in some control of their illness, and less isolated. Currently in Malawi, as in the rest of Africa, increasing numbers of children face a diagnosis of life-threatening or life-limiting illness and require compassionate palliative care. However, in Malawi, children are told little or nothing about their illnesses, and this severely restricts effective psychological and spiritual care and support.
Aims To explore the cultural barriers to disclosure of life-threatening illness to children in Malawi.
Methods Focus group discussions and in-depth interviews were used to explore Malawians' perceptions of childhood life-threatening illness, and their attitudes to talking to children about this. Concerns, difficulties, harmful and beneficial effects regarding disclosing to children were identified. Children's experiences and what they wanted to know about their illness were explored.
Results 69 adult and 12 child participants (seven with HIV/AIDS; two at end of life, and three well children) were recruited. Adults included community and hospital healthcare workers, influential leaders and parents of sick children on the hospital wards. Themes of fear of children losing hope, giving up and dying sooner if told their diagnosis, and the difficulty of causing disappointment emerged. Parents felt that doctors should tell parents but leave the parents to decide whether or not to tell the child. Children wanted to be told by doctors in order to be sure this was the truth.
Conclusions Recommendations for health workers in paediatric palliative care in Malawi have been developed, to facilitate explanation and communication with children and families regarding life-threatening and life-limiting illness. Time and discussion with parents is needed to demonstrate the benefits of openness with children in promoting trust and support; and to help parents recognise the ongoing value of life even without cure, and the role of symptom control. Practical help involving leaflets and role play may be useful.