Living with thalassaemia in Papua New Guinea, the experience of children, adolescents and their families

Abstract

AIM: Thalassaemia, the commonest genetic blood disorder in Papua New Guinea (PNG) presents daunting challenges for the affected children, their parents and families, and the health system. We aimed to describe the quality of life of affected children and adolescents and the experience of and difficulties faced by their parents in the setting of a tertiary referral hospital in PNG. METHODS: A mixed-methods longitudinal study involving baseline questionnaire, then serial interviews with parents, children and adolescents living with β-thalassaemia attending Port Moresby General Hospital. RESULTS: Twenty-one patients and their families were interviewed over a 6-month period. Most families origin..