Abstract :
Introduction: According to the Global Health Organisation thalassemia is the most prevalent genetic disorder which immensely affect the life of about 100,000 infants in over 60 countries. In India, thalassemia major is also the most prevalent genetic disorder. As indicated by the national statistics report, 22,000 patients of thalassemia major exist in our country. Thalassemia major is a chronic disease which has a long treatment regimen thus putting the affected children and their caregivers through a variety of challenges both physically and mentally.
Objective: To assess the health promotion practices and coping behaviors among parents/caregivers of children suffering from Thalassemia Major.
Materials and Methods: A descriptive study was conducted in the thalassemia clinic, APC, PGIMER, Chandigarh. Data was collected from 70 parents of thalassemic children with age group of 4 to 17 years on Socio Demographic Profile, clinical profile, Coping Health Inventory of Parents (CHIP) and Health Promotion Practices (HPP).
Results: The study showed that 51.9% caregivers of thalassemic children reported that they considered the items enlisted in CHIP to be moderately helpful, 45.2% reported them to be extremely helpful while according to 2.9% of the subjects, they were minimally helpful. All the subjects were in the “always” level of the HPP i.e. caregivers were following health promotion practices. This study also revealed that majority of parents (61%) did not receive any genetic counselling during their first pregnancy.
Conclusion: The study concluded the association between major study variables like Health Promotion practices (HPP) and Coping Health Inventory Of Parents (CHIP) analysed by Pearson correlation. The results revealed that there was low positive correlation between HPP and CHIP i.e. 0.078.
Keyword :
Health Promotion Practices, coping behaviors, Caregivers, Children, Thalassemia major.