Problems encountered by immediate families in caring for children affected with sickle cell disease.University Teaching Hospital,Lusaka, Zambia

Abstract

Sickle Cell Disease (SCD) is a chronic incurable genetic blood disorder that affects the Haemoglobin (Hb) within the Red Blood Cell (RBC).The disease affects millions of people throughout the world and is one of the most prevalent and costly genetic disorder. It is also found in people of African heritage, Mediterranean, Caribbean, South and Central America, Arabian and Indian ancestry.Patients with SCD experience and endure frequent and prolonged bouts of pain and suffer from several complications associated with the disease. This requires multiple hospitalizations and causes a misery of burden. The family experiences several problems in caring and managing these children.The aim of the study was to assess the problems encountered by immediate families in caring for children affected with SCD. The study was a descriptive cross sectional study conducted at University Teaching Hospital (UTH) paediatrics department. The study sample consisted of 145 parents and guardians of children affected with SCD seen at UTH SCD outpatient clinic. The study population was sampled using non probability sampling method known as convenient sampling.A structured interview schedule consisting of both closed and open ended questions was used to collect both qualitative and quantities data. SPSS version 16 was used to analyze data. Chi square test was used to measure association between variables. The cut off point for statistical significance was 0.05. The study revealed that majority of respondents (63%) had low levels of knowledge of SCD. There was a strong association between level of education and knowledge of the disease ( e_value 0.01).The level of knowledge also influenced the frequency of hospital hospitalizations The study revealed that the majority of respondents experienced financial burdens in caring for children affected with SCD and this was a major source of anxieties to the families. There was an association between monthly income and families borrowing money to take care of family needs (e value 0.01). The studies revealed that, majority of the mothers (69%) of the affected children were unable to work because of the responsibilities of caring for the affected child.