THE CONTRIBUTING FACTORS RESPONSIBLE TO IMPACT THE DISEASE BURDEN AND QUALITY OF LIFE AMONG THALASSEMIA CHILDREN AND THEIR PARENTS
Abstract
“India has the largest number of children with Thalassemia Major in the world, about 1 to 1.5 lakh, and about 10,000-15,000 children having Thalassemia Major are born every year2, affects approximately 4.4 out of every 10,000 live births throughout the world. A sequential exploratory mixed method design, the approach was qualitative (Phenomenological) Quantitative (Cross-sectional) used to identify the contributing factors responsible to impact the disease burden and quality of life among thalassemia children and their parents 250 Thalassemia major children and their 250 parents (father, mother / caretakers) by using a non-probability purposive) sampling technique selected, and result revealed that:
A) Among identified 14 factors none of the factors the children neither scored excellent or Good and not even 50% of score. The highest score of Excellent, gained in two Factors i.e., for Factor: 12 (Social support and schooling) 43.2%, And in Factor 5: Financial impact and social crisis: 38.4%. The highest score of Good: availed by these children were at the area of Factor:14 (Support to health) 43.2%, Factor 1: (Physical wellness) 39.6%, and nearly 35% scoring received at Six areas i.e., for: Factor 6: (Peer support and schooling), Factor 8: (Coping up with challenges), Factor 9: (Emotional and cognitive level) and for Factor 13: (Academic issues and spirituality).
B) 8 Factors Identified to evaluate the impact of disease burden among Parents of thalassemia children on their quality of Life: The assessment of overall scoring of 8 factors reveals that the highest score of excellent was availed for Factor F7: 37.2% in Emotional control, 34% in Factor F4: Family support, Factor F2:26 % Financial status, Factor F1: 25.6% Physical health, Factor F3 :25.2% Psychological domain, Factor F8: 21.6% Self- Satisfaction, Factor F5:22% Spirituality, Factor F6: 15.2%, but reveals Less than 40% in all factors. The highest score of Good was availed in Factor F5: Spirituality: 56.4%, in F6 comfort level 47.2% in comfort level and in other areas the score was less than 40%. Thus, it reveals that the QOL of these parents are affected, and the study concludes that the QOL of parents can have direct impact on, Thalassemic children’s Quality of Life.
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Varghese A, U. Usha, Development and standardization of a tool for the assessment of quality of life among thalassemia children and their parents, International Journal of Nursing and Medical Science 2020:9(1) 01-36 IJNMS ISSN: 2454-6674
Varghese A, U. Usha, Development and standardization of a tool for the assessment of quality of life among thalassemia children and their parents, International Journal of Nursing and Medical Science 2020:9(1) 37-55 IJNMS ISSN: 2454-6674 (Part 2: In continuation with article published: Volume 9 Issue 1, Jan-March 2020, PN 37-55).
