Abstract
Background: Thalassemia is hereditary blood disorder that is defined by the diminished synthesis of haemoglobin and anaemia. There are two–alpha and beta thalassemia, and it is classified that they are widespread in many countries, including Pakistan and Azad Kashmir. This, indeed, staggers the flow of the normal development of the personalities of these people since early diagnose combined with the corresponding management produces a significant impact on the quality of the life of afflicted people. However, the general public awareness of thalassemia remains low among parents and caregivers, this situation puts the individuals at disadvantages since diagnosis is likely to occur late and the management is usually grossly inadequate and the health impacts are bound to be terrible.
Aim: The purpose of this work was to find out how much parents and caregivers of children with thalassemia know about this disease, what misconceptions they have and what informational gaps should be filled.
Methods: This type of cross-sectional descriptive study was carried out at a tertiary care hospital located in District Poonch, Azad Kashmir having a specialized thalassemia clinic. The target group in this study comprised parents or caregivers of children with the thalassemia disease. Information was obtained using a structured self-administered and self-developed questionnaire that included closed and/or open-ended questions about the causes, symptoms, treatment, genetic factor, and prevention of thalassemia. Mean, standard deviation, and frequency tables were used to summarize quantitative data and qualitative data was analysed by making frequency distribution of the misconceptions identified from the open-ended questions.
Results: The survey revealed that, although people knew the symptoms of thalassemia well (85%), their understanding of the issues related to inherited gene and prevention measures was considerably less (35%). The study showed that knowledge about breast cancer and its treatment depended on the socio-economic status and educational level of the respondents; the families with low income and with low educational level had the lowest level of awareness. Many people had wrong perceptions about this disorder as a genetic disease and about the methods used to prevent it.
Conclusion: This is much so because the research points out some fatal misconceptions about thalassemia among parents and caregivers most of whom evidently do not understand modes of inheritance and prevention tactics. Just like the study revealed, patients and the public generally do not have adequate knowledge of the condition, which justifies the need to undertake awareness campaigns that would help fight the disease through early diagnosis and prevention. An important step that has to be taken by the affected healthcare providers, is to ensure they take an active part in providing information in these diseases to the families affected. Primary care providers and other local health authorities may want to engage in educational it means that further efforts should be made to increase public attention, especially for rural and other regions which have not yet paid enough attention to OFE programs.
Keywords: Thalassemia, Awareness, Genetic Inheritance, Prevention, Healthcare Education, Azad Kashmir, Parents and Caregivers.