Prevalence, practices and challenges of home management of pain among children with sickle cell anaemia attending Mulago Sickle Cell Clinic

Abstract

BACKGROUND The most problematic aspect of managing sickle cell disease is the pain caused by vaso-occlusion . Despite a good follow-up of the patients, the vaso-occlusive crises remain unpredictable and have an uncertain evolution, most often requiring treatment with an analgesic agent at home before consultation with a healthcare provider. OBJECTIVE: To determine the prevalence, describe practices and challenges of home management of pain among children with sickle cell anemia attending Mulago sickle cell clinic. METHODS: This was a descriptive cross-sectional mixed methods study, conducted among children aged 3-17 years attending Mulago sickle cell clinic. Consecutive sampling was done until a sample size of 249 children was attained. Data was collected using a questionnaire and in- depth interviews were conducted. Quantitative data was entered into Epidata Version 4.6 then was exported to STATA College Station TX Version 14 for analysis. Qualitative data from in-depth interviews was analyzed manually using content thematic approach. RESULTS:A total of 249 participants were enrolled in the study.The mean age of the enrolled participants was (9.7±3.9)years, with median weight (IQR) 24.2(19-32.7) kgs. More than a half were female 137.(55.1%).Of the 249 children who presented with pain 245(98.4%) managed pain at home before coming to the clinic. Majority 222(89.2%) of children used both pharmacological and non pharmacological practices to manage pain at home. 192(86.5%) took an analgesic for pain management. Paracetamol was the most frequently taken medication 67(30.2%) followed by ibuprofen 56(25.2%). For those that took paracetamol, about 21(31.3%) children took correct doses and frequencies of the drug and 46(68.7%) children took incorrect doses and frequencies. For those that took ibuprofen; 29(51.8%) children took incorrect doses and frequencies of the drug and 27(48.2%) children took correct doses and frequencies. A few number of children 23(9.2%) used non pharmarcological practices only to manage pain. Challenges of home management of pain included inadequate knowledge of drug doses, support from the caregivers’ partners, individual perceptions, drug stock outs and lack of health education for pain management at home from the health facility. CONCLUSION AND RECOMMENDATION: Most children and adolescents with sickle cell anemia manage their pain at home before seeking medical attention. Nine out of ten use paracetamol and ibuprofen, often in incorrect dosages and frequencies. There is a need to improve education about using the correct dosages and use of safe non-pharmacological practices for managing pain at home.