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 e...
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Malaysian Medical Association
2011
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my.iium.irep.557792022-04-06T02:15:37Z http://irep.iium.edu.my/55779/ Thalassaemia: A study on the perception of patients and family members Jantan, Abdul Wahab Muhammad, Siti Aeshah @ Naznin Mat Zin, Nora Abdul Rahman, Suzanah Mohamed, Zulaiha Abdul Rahim, Aidil Faszrul Wan Su, Kamaruzaman R Medicine (General) 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/55779/1/Thalassaemia.pdf application/pdf en http://irep.iium.edu.my/55779/7/Scopus%20-%20Document%20details.pdf Jantan, Abdul Wahab and Muhammad, Siti Aeshah @ Naznin and Mat Zin, 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/2011/v66n4/index.html |
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R Medicine (General) Jantan, Abdul Wahab Muhammad, Siti Aeshah @ Naznin Mat Zin, Nora Abdul Rahman, Suzanah Mohamed, Zulaiha Abdul Rahim, Aidil Faszrul Wan Su, Kamaruzaman Thalassaemia: A study on the perception of patients and family members |
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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 Aeshah @ Naznin Mat Zin, Nora Abdul Rahman, Suzanah Mohamed, Zulaiha Abdul Rahim, Aidil Faszrul Wan Su, Kamaruzaman |
author_facet |
Jantan, Abdul Wahab Muhammad, Siti Aeshah @ Naznin Mat Zin, 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/55779/1/Thalassaemia.pdf http://irep.iium.edu.my/55779/7/Scopus%20-%20Document%20details.pdf http://irep.iium.edu.my/55779/ http://www.e-mjm.org/2011/v66n4/index.html |
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