Background Improvement in medical management has enabled transfusion dependent thalassaemia (TDT) patients to survive beyond childhood, building families, and contributing to the labour force and society. Knowledge about their adult life would provide guidance on how to support their needs. This study aims to explore the general well-being of adults with TDT, their employment status and challenges. Methods This study recruited 450 people with TDT, aged 18 and above, of both genders through all regional Thalassaemia societies in Malaysia and from the two participating hospitals, over five months in year 2016. A self-administered questionnaire including ‘Healthy Days Core Module’, WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. Results A total of 196 adults with TDT responded to the survey (43.6% response rate). Almost half (45%) had comorbidities and 9% suffered multiple complications: bone-related (13%), hormonal (12%), cardiac (3%) and infections (2%), resulting in 23% seeking treatment more than twice monthly. Within a month, they suffered from at least three days with poor physical and or mental health and their normal daily activities were disrupted up to three days. 36% were jobless and 38% of those with a job were receiving salaries below RM1000. The mean WHOQOL-BREF score (mean (SD)) was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Having days with mental issues, financial status, education level, ethnic and marital status were main factors affecting QOL scores. Open questions showed dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy. Conclusion The adults with TDT perceived their health as good and had less unhealthy days when compared with people with other chronic diseases. However, some perceived themselves to be facing more life disruption in a rather non-supportive community and that health services do not meet their needs. Future qualitative studies are needed to focus on their perceived needs and to look for more tailored supportive approaches.
The COVID-19 epidemic has had serious negative effects on children in terms of both their health and societal effects. However, owing to reports of a low vaccination rate, the objective of this study was to explore the factors associated with parents’ hesitation in getting their young children vaccinated. This is a cross-sectional study conducted in a tertiary hospital. All parents or legal guardians of paediatric patients with chronic illnesses aged 3 to 11 who visited the hospital during the study period filled out the online questionnaire. Two hundred and thirty-five outpatient clinic respondents and 77 ward respondents were asked to complete the questionnaire. Malays made up the majority (88.5%), followed by Chinese (6.7%) and Indians (4.8%). Ethnicity, information sources, children‘s age, knowledge score and vaccine perception were found to be significantly different across three degrees of acceptance – ‘Yes’, ‘No’ and ‘Not sure’. There was a significant correlation between ‘Yes’ and ‘No’ replies and parents‘ perceptions of immunisation hurdles. When compared to the Malays, the Chinese had substantially lower odds of responding with ‘Not sure’. Parents‘ acceptance of the vaccine was influenced by their awareness of COVID-19, the effectiveness of the vaccine, any side effects and doctors‘ recommendations. Parents were less concerned about vaccine side effects as their children aged. To infer, authorities should respond to public concerns and adverse events related to immunisation in a timely and transparent manner. To increase immunisation rates, it is important to inform the public that the advantages of receiving COVID-19 vaccination exceed its risks.
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