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...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Malaysian Medical Association
2011
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| Subjects: | |
| Online Access: | http://irep.iium.edu.my/17098/ http://irep.iium.edu.my/17098/1/MJM_vol_66_Thalassaemia%5B1%5D.pdf |
| _version_ | 1848777992773304320 |
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| author | Jantan, Abdul Wahab Muhammad, Siti Aeshah @ Naznin Mat Zain, Nora Abdul Rahman, Suzanah Mohamed, Zulaiha Abdul Rahim, Aidil Faszrul Wan Su, Kamaruzaman |
| author_facet | Jantan, Abdul Wahab Muhammad, Siti Aeshah @ Naznin Mat Zain, Nora Abdul Rahman, Suzanah Mohamed, Zulaiha Abdul Rahim, Aidil Faszrul Wan Su, Kamaruzaman |
| author_sort | Jantan, Abdul Wahab |
| building | IIUM Repository |
| collection | Online Access |
| 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. |
| first_indexed | 2025-11-14T14:54:48Z |
| format | Article |
| id | iium-17098 |
| institution | International Islamic University Malaysia |
| institution_category | Local University |
| language | English |
| last_indexed | 2025-11-14T14:54:48Z |
| publishDate | 2011 |
| publisher | Malaysian Medical Association |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | iium-170982022-04-07T01:40:10Z http://irep.iium.edu.my/17098/ Thalassaemia : a study on the perception of patients and family members Jantan, Abdul Wahab Muhammad, Siti Aeshah @ 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 Heatlh. Child health services. Preventive health services for children 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 Aeshah @ 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 |
| spellingShingle | RA0421 Public health. Hygiene. Preventive Medicine RB Pathology RJ101 Child Heatlh. Child health services. Preventive health services for children Jantan, Abdul Wahab Muhammad, Siti Aeshah @ 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 |
| title | 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_short | Thalassaemia : a study on the perception of patients and
family members |
| title_sort | thalassaemia : a study on the perception of patients and
family members |
| topic | RA0421 Public health. Hygiene. Preventive Medicine RB Pathology RJ101 Child Heatlh. Child health services. Preventive health services for children |
| 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 |