ABSTRACT
Beta thalassemia causes significant morbidity and mortality in the affected individual and a traumatic burden to other family members. Increasing the ability of the child for self care and proper maternal management, in addition to proper counseling are expected to have good impact on disease management and prevention. The purposes of this study are to identify deficits in maternal management of children with beta-thalassemia, to implement an educational intervention to help mothers to improve and increase self care capabilities and to evaluate the effectiveness of the educational intervention on mothers' knowledge, maternal management, serum ferritin level and length of hospitalization. The study was conducted at two rooms assigned to thalassemic children in the pediatric surgical ward of New Sohar Hospital. A convenient sample of 38 children with beta- thalassemia was included. Their age ranged between 6 month and 16 years; all of them undergo chelation therapy. Interview questionnaire sheet and observation checklist were used to collect data as a pre- post test to assess maternal management of desferal. Data were collected in different 4 phases: initial phase, development of educational intervention, implementation and evaluation phase. All mothers did not have any knowledge about components and function of blood at the pre test and their knowledge improved after one month in 78%, and 68.4% retained it after 3 months. Likewise, knowledge in the area of causes and prognosis of the disease has improved from 36.84% at the pretest to 94.74% immediately and after 3 month. Also mothers' knowledge about hygiene improved significantly. None of the mothers had correct knowledge before educational intervention neither about the amount of iron in the body nor about diets that increase iron absorption and only 28.9% gave correct answer about the problems of iron overload. The percentage improved significantly after educational intervention: 97.4% immediately and after 3 months. Correct answer in the pre test about when to give desferal was given by 28.9%; and their percentage improved to become 76% immediately and 71% after 3 months. At pretest, none of mothers were able to administer desferal by themselves; while immediately after intervention, 97.4% became able. However this percentage dropped to 76% after 3 months. Meanwhile, the mothers' compliance improved after the educational intervention. When comparing the reported side effects of administering desferal, 52.6% in pretest reported lump formation at the site of injection compared to only 2.6 after intervention. Mentioning abscess formation decreased from 15.7 to zero. After 3 months, none of them reported these side effects and the difference was statistically significantly. Also mothers' management of side effects of desferal had improved significantly. A marked decrease of the serum ferritin was noticed at the post test and the difference was significant than pre test. The frequency and length of hospitalization have significantly dropped after educational intervention. beta-thalassemia requires prolonged regiment of management and care. For the care to be effective, mothers and children need continuous support, understanding, and frequent interview to reinforce the positive behavior and keep refining their knowledge through educational intervention. Premarital counseling is highly needed, social and professional support is highly recommended