Burden of health-care of carers of children with sickle cell disease in Nigeria

Sickle cell anaemia in children is characterised by recurrent crises that frequently involve intensive medical care which may impact on the health and well-being of their carers. The psychosocial impact of sickle cell disease on 67 carers of children with sickle cell disease attending the Paediatric Haematology/Oncology clinic of the University College Hospital, Ibadan, Nigeria, was determined between February and May 2007 using a structured questionnaire adapted from an instrument earlier validated for the study of carer burden in sickle cell disease and relevant to the Nigerian culture. Data analysis was performed using the Statistical Package for Social Sciences (SPSS) version 15.0. Demographic factors as well as frequency of hospitalisations and blood transfusions were each categorised into groups and the Mann-Whitney U-test was used to test for differences in stress scores between any two groups while the Kruskal-Wallis test was used to test for differences in more than two groups. Level of statistical significance was set at P < 0.05. Family finances were adversely affected in 39 (58.2%) families. Financial stress was frequently associated with a history of two or more hospitalisations in the previous year and more so in families with more than three children. Majority (80.6%) of the carers said they had minimal or no difficulty coping with their children. There was also a significant correlation between financial stress and difficulty in parental coping. Caring for the illnesses in the children often caused disruptions in family interactions; worst in the first year after diagnosis and improved over the years. Regular assessment of psychosocial areas of need is necessary to guide provision of necessary support.