BARRIERS TO HOME-BASED MANAGEMENT OF CHILDREN WITH SICKLE CELL DISEASE IN IBADAN

Abstract

Sickle cell disease has been reported to be the most prevalent and most problematic inherited non communicable disease known world wide. Nigeria is the most populous black nation with the highest burden of the disease in Sub- Saharan Africa. Over 150,000 children are born with sickle cell disease annually and about 100,000 annual deaths from SCD. Home-based management has been recommended as a cost effective approach in mitigating the impact of the disease on the patients, the caregivers and their families. The study was conducted to assess what influences the preventive measures taken by the family caregivers of SCD children attending the haematotologic clinics of three government hosptials that specialise in the care of SCD in Ibadan. The study was cross sectional in design and eligible family caregivers who had SCD children attending sickle cell clinics were enrolled. A pretested semi-structured, interviewer administered questionnaire was used to collect information to validate the instrument before the commencement of the actual data collection. Data collected induced socio-demographic characteristics, knowledge of sickle cell disease and Home­based management, the practices of HBM and what influences HBM practice. A ten item knowledge scale, six item practice scale and seven item influence scale were employed. Overall knowledge and practice were categorized into good, poor and average score. Also factors score were categorized into negative and positive influence. The mean age of respondent was 38.44 ± 7.78 years. The age range was 20-69 years. Most (49.3%) of the respondents were between 30 to 39 years and 92.6% of them were Yorubas. Majority (88.6%) were married, mostly women (81.9%). Those that were self employed were 67.9% and 47.4%, of their level of income were less than N18 000. Those that had tertiary education were 49.5%. Majority (86.3%) had at least one SCD child. The mean age of SCD child was 83.94±43.21 months. There were more male (59.8%) SCD children attending haematologic clinics. The mean age of diagnosis of SCD genotype in child was 27.91±27.34. Most caregivers (67.7%) had average knowledge of SCD. Those that have heard of HBM were 81.2% and (94.0%) of their source of information being the health facility. Those with average practice of HBM were 65.1% and 84.4% had negative influence on their practice of HBM. The independent predictor of practice of HBM were caregivers' gender (AOR 1.55, 0.80-3.01), marital status (AOR 1.54, 0.72-3.28) and level of income (AOR 1.50, 0.88-2.55). Caregivers of SCD children in Ibadan received adequate information on prevention of sickle cell crises but are less likely to have good practice of HBM with low source of income. There is need to focus more on advocacy for welfare system to be made available to the caregivers of SCD children.