Iram Batool, Kamran Ishfaq, Ruqia Safdar Bajwa.
Psychosocial Burden among Thalassemia Major Patients: An Exploratory Investigation of South Punjab, Pakistan.
Pak Paed J Jan ;41(3):158-62.

Objective: The objective of the present study was to determine psycho-social life aspects of Thalassemia major patients. Study design: An exploratory investigation through cross sectional design. Place & duration: The study was conducted at the Thalassemia center of The Children’s Hospital & the Institute of Child Health Multan, Pakistan from 1st June 2016 to 30thDecember, 2016. Methodology: Ninety one registered Thalassemia major patients having age 12 – 18 years were selected. A structured interview conducted on sample taken through convenient sampling. The questions relating to demographic information and psychosocial life aspect of affected thalassemia major patients, disease impact on education, outdoor play, difference from siblings/friends, body image, social life, family adjustment, anxiety, and isolation stigmatization were asked. Results: Among the total respondents 50(54.9%) responded that Thalassemia disease created an impact on their education. Majority [77(84.6%)] of the respondents reported that they were not engaged in outdoor play equal to their friends. Greater number of the respondents [70(76.9%)] were not satisfied with their body image did not discuss their illness and its related problem with their friends. Majority of the respondents [71(78.0%)] said that they felt different from their siblings. Greater number of the respondents [69(75.8%)] said that they got the same attention from their parents. About 77(84%) respondents said that their disease had a burden on their parents 55(60.4%) of the respondents discussed that their disease limited their social life. There was a tremendous psychosocial disease burden perceived by affected thalassemia major patients. Conclusions: The findings suggested that psychosocial support is also required as the medical help for Thalassemia major patients. It is the responsibility of doctors, nurses, paramedical staff, clinical psychologists, social workers, and volunteers to provide psychosocial support to the thalassemia major patients and encourage their families in providing support the these patients.

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