Wahab I Abdul, Naznin M, Nora M Z, Suzanah A R, Zulaiho M, Faszrul A R Aidl, Kamaruzaman W S
Medical Faculty, International Islamic University Malaysia, Pahang, Malaysia.
Med J Malaysia. 2011 Oct;66(4):326-34.
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.
地中海贫血管理方面的显著改善并未伴随着心理社会康复方面的进展，因为地中海贫血继续给患者及其家庭成员带来挑战。在马来西亚，很少有研究关注此类问题。因此，本研究旨在探讨对地中海贫血的担忧、信念和感受。该研究于2009年进行，历时7个月，针对彭亨州关丹市登古安潘·阿夫赞医院儿科诊所8至22岁的患者及其家长开展了“焦点小组”研究。结果表明，担忧和负面影响与教育成绩较低、自我形象不佳、就业机会少、婚姻、经济负担和社会融合有关。皮下铁螯合剂的依从性较差。与输血治疗相关的担忧多种多样。显然，地中海贫血极大地影响了心理社会层面，需要更有组织的长期心理社会支持来提高患者的生活质量。
