OBJECTIVE: This study aims to examine and contrast the perceptions of MS patients, neurologists, and palliative care physicians towards providing palliative care for patients with MS in Malaysia.
METHODS: 12 MS patients, 5 neurologists, and 5 palliative care physicians participated in this qualitative study. Each participant took part in a semi-structured interview. The interviews were transcribed verbatim, and analysed using an iterative thematic analysis approach.
RESULTS: Patients and neurologists mostly associated palliative care with the end-of-life and struggled to understand the need for palliative care in MS. Another barrier was the lack of understanding about the palliative care needs of MS patients. Palliative care physicians also identified the scarcity of resources and their lack of experience with MS as barriers. The current referral-based care pathway itself was found to be a barrier to the provision of palliative care.
CONCLUSIONS: MS patients in Malaysia face several barriers in accessing palliative care. Overcoming these barriers will require improving the shared understanding of palliative care and its role in MS. The existing care pathway also needs to be reformed to ensure that it improves access to palliative care for MS patients.
OBJECTIVE: The study seeks to develop an understanding of the needs of patients with multiple sclerosis living in Malaysia in order to generate insights and contribute to a global database of patients' experience.
METHOD: 12 patients with multiple sclerosis participated in this qualitative study and took part in a semi-structured interview. The interviews were transcribed and analysed using an iterative thematic analysis approach.
RESULTS: The experiences, challenges and needs of the patients were reported. Five themes were developed (Daily living, Financial, Emotional and psychological, Healthcare, and Family). These predominantly revolved around the struggles of coping and adapting to the symptoms and disabilities imposed by multiple sclerosis, their heavy reliance on personal finances to cope with the increased costs of living for themselves and their families, as well as the limited healthcare services and treatments available to help them to manage the physical and emotional symptoms of multiple sclerosis.
CONCLUSION: Patients with multiple sclerosis in Malaysia have complex needs that are neglected due perceived lack of importance of the disease and the poor understanding of multiple sclerosis in general. Patients rely heavily on their finances to improve their quality of life. This perpetuates health inequities and reform of the national health financing system is needed to provide patients with the healthcare and support they need.Implications for rehabilitationPatients with multiple sclerosis in Malaysia prioritize being able to cope and adapt to their disabilities in order to continue performing their activities of daily living.There is a need to increase the availability and accessibility of healthcare professionals that are experienced with the management of multiple sclerosis.Healthcare professionals need to improve their understanding of the patients' needs and what they consider to be important in order to provide therapy that is effective and relevant.Patients also require financial support to help them with the increased costs of living associated with MS as well as the costs of healthcare services such as physiotherapy and rehabilitation.
METHODS: Drawing on ethnographic research from rural Malaysia, this descriptive article explores ethnic Malaysian-Chinese stroke survivors' lay understandings of stroke. Eighteen community-dwelling stroke survivors aged 50-83 took part in the study.
RESULTS: Causation of stroke was derived from cultural, biomedical and social sources. Participants also drew simultaneously from both biomedical and traditional explanations of stroke to develop their own understanding of etiology. Similarities with biomedical causation and other studies from different cultures were found. Participants' typically focused on the more immediate effects of stroke and often do not attribute causation and association with their comorbid conditions which are also risk factors of stroke.
CONCLUSION: Lack of knowledge about stroke and its symptoms was evident in participants' account. Findings emphasize the importance of knowledge based health interventions, especially in health education strategies for stroke survivors to reduce delays to diagnosis and potentially improve health outcomes post-stroke. Implications for rehabilitation Stroke survivors often form explanatory models of stroke that draw from both biomedical and traditional explanations of stroke. Understanding how people derive lay understandings of stroke can contribute towards developing the goals and activities that facilitate recovery and rehabilitation in similar settings. Health practitioners in the community should strengthen communication regarding the identification, etiology and risk factors of stroke with stroke survivors and their carers to improve compliance to medication, exercise and diet for better recovery. Sustained health education which is culturally relevant is recommended. Communication should also include non-physical impact of stroke (such as cognitive deficits and emotional difficulties) as the stroke survivors were unlikely to relate such symptoms to stroke.
DESIGN: Using data from the 2011-2012 US National Health and Nutrition Examination Surveys, we examined the relationship between HbA1c and a single fasting measure of blood glucose in a non-clinical population of people with known diabetes (n=333). A linear equation for estimating HbA1c from blood glucose was developed. Appropriate blood glucose cut-off values were set for poor glycaemic control (HbA1c≥69.4 mmol/mol).
RESULTS: The HbA1c and blood glucose measures were well correlated (r=0.7). Three blood glucose cut-off values were considered for classifying poor glycaemic control: 8.0, 8.9, and 11.4 mmol/L. A blood glucose of 11.4 had a specificity of 1, but poor sensitivity (0.37); 8.9 had high specificity (0.94) and moderate sensitivity (0.7); 8.0 was associated with good specificity (0.81) and sensitivity (0.75).
CONCLUSIONS: Where HbA1c measurement is too expensive for community surveillance, a single blood glucose measure may be a reasonable alternative. Generalising the specific results from these US data to low resource settings may not be appropriate, but the general approach is worthy of further investigation.
Methods: Data from a survey of 574 Adventists residing in West Malaysia, aged 18-80 years, were analyzed. Dietary habits were measured using the Nutrition subscale of Health Promoting Lifestyle Profile II.
Results: Education and income were significantly associated with dietary habits before and after controlling for demographics. There was a gradient of association; a higher level of education and higher income were associated with better dietary habits. However, only education remained significantly associated with dietary habits when the other two socioeconomic variables were included. Employment was not significantly associated with dietary habits before or after controlling for demographic variables and the other two sociodemographic variables.
Conclusions: This study showed that education is the strongest predictor of healthy diet, and a social gradient in dietary habits still exists even among health-conscious population.
Methods: We assessed study-related records to determine the pace of data collection, response from potential participants, and feedback following data and sample collection. Overall and stratified measures of data and sample availability were summarised. Crude prevalence of key risk factors was examined.
Results: Approximately half (49.5%) of invited individuals consented to participate in this study, for a final sample size of 203 (161 adults and 42 children). Women were more likely to consent to participate compared with men, whereas children, young adults and individuals of Malay ethnicity were less likely to consent compared with older individuals or those of any other ethnicity. At least one biological sample (blood from all participants - finger-prick and venous [for serum, plasma and whole blood samples], hair or urine for adults only) was successfully collected from all participants, with blood test data available from over 90% of individuals. Among adults, urine samples were most commonly collected (97.5%), followed by any blood samples (91.9%) and hair samples (83.2%). Cardiometabolic risk factor burden was high (prevalence of elevated HbA1c among adults: 23.8%; of elevated triglycerides among adults: 38.1%; of elevated total cholesterol among children: 19.5%).
Conclusions: In this study, we show that it is feasible to create biodata resources using existing HDSS frameworks, and identify a potentially high burden of cardiometabolic risk factors that requires further evaluation in this population.
METHODS: A 5-year (2011-2015) cross-sectional study was conducted using data from the Malaysian National Obstetrics Registry (NOR). A total of 608,747 deliveries were recorded from 11 tertiary state hospitals and 1 tertiary hospital from the Federal territory.
RESULTS: During the study period, there were 141,257 Caesarean sections (23.2%). Caesarean sections in Group 1 (nulliparous term pregnancy in spontaneous labour) and Group 3 (multiparous term pregnancy in spontaneous labour) had an increasing trend from 2011 to 2015. The group that contributed most to the overall caesarean section rates was Group 5 (multiparous, singleton, cephalic≥37 weeks with previous caesarean section) and the rates remained high during the 5-year study period. Groups 6, 7 and 9 had the highest caesarean section rates but they made the smallest contribution to the overall rates.
CONCLUSIONS: Like many countries, the rate of caesarean section has risen over time, and the rise is driven by caesarean section in low-risk groups. There was an important hospital to hospital variation. The rise in caesarean section rates reflects a globally disturbing trend, and changes in policy and training that creates a uniform standard across hospitals should be considered.
METHODS AND ANALYSIS: The target participants are infants born from January to June 2015 in the South East Asia Community Observatory (SEACO) platform. The SEACO is a Health and Demographic Surveillance System (HDSS) that is established in the District of Segamat in the state of Johor, Malaysia. For the quantitative strand, the sociodemographic data, feeding practices, anthropometry measurement and total nutrient intake will be assessed. The assessment will occur around the time complementary feeding is expected to start (7 Months) and again at 12 months. A 24-hour diet recall and a 2-day food diary will be used to assess the food intake. For the qualitative strand, selected mothers will be interviewed to explore their infant feeding practices and factors that influence their practices and food choices in detail.
ETHICS AND DISSEMINATION: Ethical clearance for this study was sought through the Monash University Human Research and Ethics Committee (application number CF14/3850-2014002010). Subsequently, the findings of this study will be disseminated through peer-reviewed journals, national and international conferences.
METHODS: Ten focus group discussions were held with opinion leaders (chiefs, elders, assemblymen, leaders of women groups) and 16 in-depth interviews were conducted with healthcare workers (District Directors of Health, Medical Assistants in-charge of health centres, and district Public Health Nurses and Midwives). The interviews and discussions were audio recorded, transcribed into English and imported into NVivo 10 for content analysis.
RESULTS: As heads of the family, men control resources, consult soothsayers to determine the health seeking or treatment for pregnant women, and serve as the final authority on where and when pregnant women should seek medical care. Beyond that, they have no expectation of any further role during antenatal care and therefore find it unnecessary to attend clinics with their partners. There were conflicting views about whether men needed to provide any extra support to their pregnant partners within the home. Health workers generally agreed that men provided little or no support to their partners. Although health workers had facilitated the formation of father support groups, there was little evidence of any impact on antenatal support.
CONCLUSIONS: In patriarchal settings, the role of men can be complex and social and cultural traditions may conflict with public health recommendations. Initiatives to promote male involvement should focus on young men and use chiefs and opinion leaders as advocates to re-orient men towards more proactive involvement in ensuring the health of their partners.