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: | , , , , , , |
|---|---|
| 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 |
| Summary: | 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. |
|---|