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

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...

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Main Authors: Jantan, Abdul Wahab, Muhammad, Siti Aesah @ Naznin, Mat Zain, Nora, Abdul Rahman, Suzanah, Mohamed, Zulaiha, Abdul Rahim, Aidil Faszrul, Wan Su, Kamaruzaman
Format: Article
Language:English
Published: Malaysian Medical Association 2011
Subjects:
Online Access:http://irep.iium.edu.my/17098/
http://irep.iium.edu.my/17098/
http://irep.iium.edu.my/17098/1/MJM_vol_66_Thalassaemia%5B1%5D.pdf
id iium-17098
recordtype eprints
spelling iium-170982013-10-23T00:53:24Z http://irep.iium.edu.my/17098/ Thalassaemia : a study on the perception of patients and family members Jantan, Abdul Wahab Muhammad, Siti Aesah @ Naznin Mat Zain, Nora Abdul Rahman, Suzanah Mohamed, Zulaiha Abdul Rahim, Aidil Faszrul Wan Su, Kamaruzaman RA0421 Public health. Hygiene. Preventive Medicine RB Pathology RJ101 Child Health. Child health services 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. Malaysian Medical Association 2011-10 Article PeerReviewed application/pdf en http://irep.iium.edu.my/17098/1/MJM_vol_66_Thalassaemia%5B1%5D.pdf 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 http://www.e-mjm.org/index.html
repository_type Digital Repository
institution_category Local University
institution International Islamic University Malaysia
building IIUM Repository
collection Online Access
language English
topic RA0421 Public health. Hygiene. Preventive Medicine
RB Pathology
RJ101 Child Health. Child health services
spellingShingle RA0421 Public health. Hygiene. Preventive Medicine
RB Pathology
RJ101 Child Health. Child health services
Jantan, Abdul Wahab
Muhammad, Siti Aesah @ Naznin
Mat Zain, Nora
Abdul Rahman, Suzanah
Mohamed, Zulaiha
Abdul Rahim, Aidil Faszrul
Wan Su, Kamaruzaman
Thalassaemia : a study on the perception of patients and family members
description 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.
format Article
author Jantan, Abdul Wahab
Muhammad, Siti Aesah @ Naznin
Mat Zain, Nora
Abdul Rahman, Suzanah
Mohamed, Zulaiha
Abdul Rahim, Aidil Faszrul
Wan Su, Kamaruzaman
author_facet Jantan, Abdul Wahab
Muhammad, Siti Aesah @ Naznin
Mat Zain, Nora
Abdul Rahman, Suzanah
Mohamed, Zulaiha
Abdul Rahim, Aidil Faszrul
Wan Su, Kamaruzaman
author_sort Jantan, Abdul Wahab
title Thalassaemia : a study on the perception of patients and family members
title_short Thalassaemia : a study on the perception of patients and family members
title_full Thalassaemia : a study on the perception of patients and family members
title_fullStr Thalassaemia : a study on the perception of patients and family members
title_full_unstemmed Thalassaemia : a study on the perception of patients and family members
title_sort thalassaemia : a study on the perception of patients and family members
publisher Malaysian Medical Association
publishDate 2011
url http://irep.iium.edu.my/17098/
http://irep.iium.edu.my/17098/
http://irep.iium.edu.my/17098/1/MJM_vol_66_Thalassaemia%5B1%5D.pdf
first_indexed 2023-09-18T20:25:54Z
last_indexed 2023-09-18T20:25:54Z
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