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Thalassaemia : a study on the perception of patients and family members

Jantan, Abdul Wahab and Muhammad, Siti Aesah @ Naznin and Mat Zain, Nora and Abdul Rahman, Suzanah and Mohamed, Zulaiha and Abdul Rahim, Aidil Faszrul and Wan Su, Kamaruzaman (2011) Thalassaemia : a study on the perception of patients and family members. Medical Journal of Malaysia , 66 (4). pp. 326-334. ISSN 0300-5283

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Abstract

Marked improvement in the management of thalassaemia has not been matched by progress in psychosocial rehabilitation as thalassaemia continues to pose challenges to patients and their family members. Few studies have been carried out in Malaysia to look at such issues. This study is therefore to explore the concerns, beliefs and feelings about thalassaemia. It was conducted in the year 2009 over 7 months on “focus groups”, in patients aged 8-22 years and parents attending Paediatric Clinic of Tengku Ampuan Afzan Hospital, Kuantan, Pahang. Results showed that concerns and adverse impact were related to lower grades in education, poor self-image, less chance of employment, marriage, financial burden and social integration. Compliance to subcutaneous iron chelator was poor. There were various concerns related to blood transfusion therapy. It is evident that thalassaemia greatly affects the psychosocial dimensions and a more structured long term psychosocial support is needed to improve quality of life of patients.

Item Type: Article (Journal)
Additional Information: 2900/17098
Uncontrolled Keywords: Thalassaemia, Perception, Patients, Families
Subjects: R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
R Medicine > RB Pathology
R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Kulliyyahs/Centres/Divisions/Institutes (Can select more than one option. Press CONTROL button): Kulliyyah of Allied Health Sciences > Department of Biomedical Science (Effective:1st July 2011)
Kulliyyah of Medicine > Department of Basic Medical
Kulliyyah of Medicine > Department of Paediatrics
Kulliyyah of Medicine > Department of Psychiatry
Kulliyyah of Nursing
Depositing User: Prof. Kamaruzaman Wan Su
Date Deposited: 29 Jan 2012 17:11
Last Modified: 23 Oct 2013 08:53
URI: http://irep.iium.edu.my/id/eprint/17098

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