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Awareness among parents of children with thalassemia major
Fehmina Arif1, Jabeen Fayyaz, Ahmer Hamid
1Paediatric Unit 1, Dow University of Health Sciences, Civil Hospital, Karachi, Pakistan.
Insights
Parental awareness of thalassaemia major (TM) is inadequate, with low knowledge of disease transmission, screening, and treatment. Education is crucial for parents of children with TM and the general public.
Area of Science:
- Pediatrics
- Genetics
- Public Health
Background:
- Thalassaemia major (TM) is a significant inherited blood disorder requiring lifelong management.
- Parental understanding of TM is critical for effective disease management and prevention of transmission.
Purpose of the Study:
- To assess the level of awareness among parents of children diagnosed with thalassaemia major.
- To identify knowledge gaps regarding disease transmission, screening, and treatment options.
Main Methods:
- A cross-sectional study was conducted at a Paediatric OPD, interviewing 120 parents of children with TM.
- Data was collected via a pre-designed questionnaire covering disease duration, blood screening, transmission, prevention, and treatment awareness.
Main Results:
- Only 15.8% of parents understood the importance of blood screening.
- Awareness of desferrioxamine (desferrol) was present in 55%, but adequate use was only 10.9%.
- A mere 15% knew TM is inherited, with low rates of family screening (5.8%) and antenatal diagnosis (5%).
Conclusions:
- Parental awareness regarding thalassaemia major is significantly inadequate.
- There is a pressing need to sensitize the general public and parents of children with TM.
- Targeted educational interventions are required to improve knowledge and management of TM.
Objective:
To determine the awareness among parents of children with thalassaemia major (TM) regarding the disease.
Methods:
This (cross sectional) study was conducted at Paediatric OPD of Civil Hospital Karachi from May 2007 to October 2007. Parents of thalassaemic children presenting to out patient department, receiving blood transfusion from Patient Welfare Association (PWA) were interviewed using a pre designed questionnaire. Informed verbal consent was taken from the parents. Questions regarding duration of illness, awareness regarding screening of blood, mode of transmission of disease, prevention and treatment were asked.
Results:
A total of 120 care takers were questioned. Majority was of low socioeconomic class and 66.7% were illiterate. Although nearly 100% of the patients were receiving blood transfusions either from PWA or Hussaini blood bank or both, only 15.8% knew the importance of blood screening. Knowledge regarding desferrol was present in 55% of the patient's parents but only 10.9% were receiving it adequately. Only 15% knew that thalassaemia is an inherited disorder and family screening of the siblings and antenatal diagnosis in subsequent pregnancies was done in 5.8% and 5% respectively.
Conclusion:
Awareness of parents regarding the disease was inadequate. General public and parents of thalassemic children should be sensitized in this regard.
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