Browsing by Person "Warren, Narelle"

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Accessing palliative care for multiple sclerosis: A qualitative study of a neglected neurological disease
(Elsevier, 2019-10) Cheong, Wing Loong; Mohan, Devi; Warren, Narelle; Reidpath, Daniel
Background Despite the global consensus on the importance of palliative care for patients with multiple sclerosis (MS), many patients in developing countries do not receive palliative care. Improving access to palliative care for MS requires a contextual understanding of how palliative care is perceived by patients and health professionals, the existing care pathways, and barriers to the provision of palliative care. 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.
Adaptive invention: independence and mobility through modifications
(Taylor and Francis Group, 2017-08-24) Mairami, Fatima Fanna; Allotey, Pascale; Warren, Narelle; Mak, Jun Shin; Reidpath, Daniel
Background: Stroke is a leading cause of disability that limits everyday activities and reduces social participation. Provision of assistive devices helps to achieve independence and social inclusion. However, due to limited resources or a lack of suited objects for their needs, individuals with disabilities in low and middle income countries (LMIC) often do not have access to assistive devices. This has resulted in the creation of purpose built innovative solutions. Methodology and case content: This paper uses a single case derived from a larger ethnographic study of stroke survivors in rural Malaysia to demonstrate the role of assistive devices in shaping stroke recovery and how existing structures can be modified. Second, the concept of affordances in relation to structures within the environment, issues of affordability and accessibility of assistive devices for individuals in LMIC are discussed. Findings and conclusions: Stroke recovery involves adapting to new limitations and discovering the support necessary to live life. These changes are influenced by a range of environmental factors. Healthcare professionals need to support stroke patients in identifying challenges and work to find innovative ways to address them. Stroke survivors may benefit from the use of an assistive device beyond its clinical function to participate purposefully in activities of daily living. Implications for Rehabilitation Stroke is a cause of disability that limits everyday activities and reduces social participation. Assistive devices help achieve independence, social inclusion and shape stroke recovery. Individuals with disabilities in low and middle income countries often do not have access to assistive devices and resort to innovative solutions that are purpose built. Stroke recovery involves adapting to new limitations and discovering the support necessary to live life as best as possible.
Challenges for Diagnostic Clarity for Post-stroke Cognitive Impairment and Behavioural Issues in Middle-Income Countries: Case Studies From Malaysia
(Frontiers Media, 2021-06-02) Yap, Kwong Hsia; Warren, Narelle; Allotey, Pascale; Reidpath, Daniel
Following stroke, individuals require ongoing screening, diagnosis and monitoring for cognitive impairment. Services and policies around these vary widely between settings, and reports from many countries highlight persistent under-diagnosis of cognitive impairment in the months and years after stroke. Missed and delayed diagnosis of post-stroke cognitive impairment, including dementia, are important factors in shaping the experiences of people so affected and their family members, especially in low- and middle-income countries. Drawing upon ethnographic research conducted in Malaysia, this article draws upon three case studies to examine the continued health-seeking behaviour after the appearance of salient cognitive and behavioural symptoms that occurred after stroke. Findings highlight the challenges in getting formal diagnostic clarity for cognitive and behavioural symptoms in a rural setting within a middle-income country. No study participants sought help for memory or cognitive problems, partly due to limited lay awareness of cognitive impairment but more significantly due to health service factors. Despite their elevated risk for dementia, participants were not monitored for cognitive impairment during any follow-up care in various health facilities. Furthermore, caregivers' attempts to seek help when behavioural issues became untenable were met with multiple health system barriers. The journey was complicated by the meanings attached to the reactions towards cognitive symptoms at the community level. We suggest that strategies seek to increase the awareness of post-stroke cognitive and behavioural symptoms, and incorporate clear treatment pathways into the long-term care plans of community-dwelling stroke survivors.
Chronic disease profiles of subjective memory complaints: a latent class analysis of older people in a rural Malaysian community
(Taylor and Francis Group, 2018-12-27) Yap, Kwong Hsia; Warren, Narelle; Allotey, Pascale; Reidpath, Daniel
Background: Subjective memory complaints (SMC) are common in the elderly and have been suggested as the first subtle sign of decline which can predict dementia. Cognitive decline is thought to be related to inflammatory processes similarly found in other chronic diseases and conditions such as stroke, heart disease and arthritis. This study aimed to examine the association of SMC with chronic diseases and the profile of these health conditions reported by a group of older adults. Methods: Data from a cross-sectional survey conducted from August 2013 and March 2014 was drawn from 6179 individuals aged 56 years and above. Multivariable logistic regression analyses were used to examine SMC’s relationship with individual chronic diseases (asthma, kidney disease, heart disease, stroke, arthritis, hypertension and diabetes) and multimorbidity. Latent class analysis (LCA) was used to identify the profile of health conditions. The effect of SMC was estimated in a multinomial logistic regression as part of the latent class model. Results: SMC was statistically significant in its association with asthma, stroke, heart disease, arthritis and multimorbidity in the fully controlled multivariable logistic regression models. Three health profiles were identified: low comorbidity (n = 4136, low rates in all health conditions), arthritis group (n = 860) and diabetes and hypertension group (n = 1183). SMC was associated with arthritis group (OR = 2.04, 95% CI = 1.51–2.75) and diabetes and hypertension group (OR = 1.22, 95% CI = 1.03–1.46). Conclusion: Adapting a combination of analytical approaches allows a better understanding in the assessment of SMC’s relationship with chronic diseases and the patterns of distribution of these health conditions.
Contextual factors that shape recovery after stroke in Malaysia
(Taylor and Francis Group, 2019-04-05) Mairami, Fatima Fanna; Warren, Narelle; Allotey, Pascale; Reidpath, Daniel
Purpose: A stroke is a sudden event which may leave individuals and their families ill-prepared to deal with the resultant disability. Several contextual factors can influence the recovery process. These factors, internal and external, exist interactively in the lived experiences of the survivors. The limited availability of rehabilitation centres that are located in urban centres meant that recovery predominately occurred outside of the biomedical health and instead relied upon the resources available to individuals and their families. Methods: A qualitative approach with data from in-depth interviews and observations were used to identify contextual factors that shaped recovery following stroke in a community. Twenty-seven individuals with stroke were drawn from a health and demographic surveillance system in Malaysia. Results: Hope and optimism, coping strategies, motivation and support from family and friends, and the use of alternative and complementary medicine shaped the process of recovery within a context where infrastructure is extremely limited. Conclusion: The identification of factors that facilitate the recovery process provides a background in which health care providers can utilise to improve their understanding of the stroke experience. Such understanding could be instrumental in aiding health professionals to offer the most effective help to their clients.
Documenting the impact of stroke in a middle-income country: a Malaysian case study
(Taylor and Francis Group, 2018-09-05) Mairami, Fatima Fanna; Warren, Narelle; Allotey, Pascale; Mak, Ju Shin; Reidpath, Daniel
Purpose: Stroke is an abrupt event that often leaves survivors with long term disabilities, causing role changes, and financial strains on households. The profound impact of stroke on survivors may lead to a decline in quality of life due to the physical, psychological, and social difficulties they experience. Taking Malaysia as an example, this study aimed to explore the impact of stroke on survivors and how health services influence their recovery in low and middle-income countries (LMIC). Method: An ethnographic approach with data obtained primarily through in-depth interviews was used. Twenty-seven participants identified as having suffered a stroke were drawn from a health and demographic surveillance system in Malaysia. Results: The physical and social disruption of the lives of stroke survivors was intensified by the resultant financial constraints placed upon individuals, families and households, compounded by inadequate support from the health, and welfare systems. Despite the disruption to their lives, most participants were, at least in part, able to reestablish their lives through various factors that include a strong family support and active coping strategies. Conclusion: In LMIC, recovery can be shaped by the family unit and through active coping strategies especially those in relation to spirituality.
Effects of Subjective Memory Complaints (SMCs) and Social Capital on Self-Rated Health (SRH) in a Semirural Malaysian Population
(Hindawi, 2019-04-10) Yap, Kwong Hsia; Mohan, Devi; Stephan, Blossom CM; Warren, Narelle; Allotey, Pascale; Reidpath, Daniel
Subjective memory complaints (SMCs) and social capital were known to be related to self-rated health (SRH). Despite this, no studies have examined the potential interaction of SMC and social capital on SRH. Using data from a cross-sectional health survey of men and women aged 56 years and above (n = 6,421), we examined how SMCs and social capital explained SRH in a population of community-dwelling older adults in a semirural area in Malaysia. We also evaluated whether SRH’s relationship with SMCs is moderated by social capital. The association of SMC and social capital with poor SRH was investigated using multivariable logistic regression. Social capital (OR = 0.86, 95% CI = 0.82–0.89), mild SMC (OR = 1.70, 95% CI = 1.50–1.94), and moderate SMC (OR = 1.90, 95% CI = 1.63–2.20) were found to be associated with poor SRH after adjustment for sociodemographic factors and depression in the initial regression model. SMC was found to have partial interaction effects with social capital which was included in the subsequent regression model. Unlike individuals with no SMC and mild SMC, those who reported moderate SMC did not show decreasing probabilities of poor SRH despite increasing levels of social capital. Nevertheless, this analysis suggests that social capital and SMC are independent predictors of poor SRH. Further research needs to be targeted at improving the understanding on how social capital and SMC moderate and interact with the perception of health in older adults.
Having Impact: Doing Applied Medical Anthropology in Australia and Malaysia
(WIley, 2018-11-15) Warren, Narelle; Allotey, Pascale; Reidpath, Daniel
Interpretations of self-rated health in stroke survivors from a semi-rural community in South East Asia
(Taylor and Francis Group, 2019-05-23) Yap, Kwong Hsia; Warren, Narelle; Reidpath, Daniel; Allotey, Pascale
Purpose: Stroke survivors report poorer self-rated health (SRH) compared to the general population but there is limited understanding on what contributes to SRH. This ethnographic study examined the individual and contextual factors that shape stroke survivors’ SRH in a rural middle income country situated in South East Asia. Methods: Ethnographic methods which encompasses various data collection methods from different data sources were used in this study to describe the socio-cultural context of 16 stroke survivors living in a rural village. Within this context, the experiences of these participants were then interpreted in terms of what contributed to their perception of health and recovery, juxtaposed with objectively measure physical and cognitive states. Results: SRH reflected the post stroke adjustment of stroke survivors. Better SRH was influenced by good post-stroke adjustment that was achieved by a combination of physical functioning, cognitive functioning, emotional well-being and family support. Poorer SRH appear to reflect poor post-stroke adjustment regardless of the objective physical and cognitive states of the stroke survivors. It was also observed that cognitive deficits, though its presence was acknowledged by participants, were usually not taken into account when rating SRH. However, while physical functioning was perceived by participants to directly impact SRH, the presence of cognitive deficits (often in tandem with depressive symptoms) indirectly complicated the recovery of physical functions treasured by participants. Conclusion: Stroke survivors reporting poorer SRH warrant further attention and intervention from health practitioners supporting the longer-term needs of stroke survivors in similar settings.
Living with a neglected neurological disease: a qualitative study of patients with multiple sclerosis in Malaysia
(Taylor & Francis, 2019-11-26) Cheong, Wing Loong; Mohan, Devi; Warren, Narelle; Reidpath, Daniel
Background The needs of patients with multiple sclerosis have been well-studied in high-income, high-prevalence countries but few studies have been based in low- and middle-income countries where resources are relatively scarce. As such, little is known about the needs of patients living in these countries. 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 rehabilitation Patients 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.
Multiple Sclerosis in the Asia Pacific Region: A Systematic Review of a Neglected Neurological Disease
(Frontiers Media, 2018-06-08) Cheong, Wing L.; Mohan, Devi; Warren, Narelle; Reidpath, Daniel
Background: Multiple sclerosis is thought to be relatively uncommon in the Asia Pacific region with prevalence estimated between 0 and 20 per 100,000. There is reason to doubt these estimates due to the lack of data from many countries and the growing evidence of variability in prevalence across small geographic areas. This study was conducted to systematically review the population prevalence, incidence, mortality and disability progression estimates of MS within the Asia Pacific region. Methods: The systematic review was conducted on articles from 1985 till 31st July 2017 within the PubMed/MEDLINE, EMBASE, SCOPUS, and The Cochrane Library databases. The review included articles that were population-based studies conducted on patients with MS in the Asia Pacific region that reported either incidence, prevalence, mortality, or disease progression. Hospital-based studies and non-research articles were excluded to ensure that only information representative of the population was included for analysis. Data appraisal and extraction was done by independent reviewers. This review was registered with PROSPERO (ID: CRD42017082760). Findings: Of the 2,757 articles found, 16 studies were included. Information on 6 (18.75%) of 32 Asia Pacific countries was found, with data representing 8% of the total population. Prevalence estimates were available for 6 countries while estimates for incidence (3 countries), mortality (4 countries), and disease progression (2 countries) were limited. Interpretation: The lack of epidemiological data available in the Asia Pacific region creates a blind spot in the surveillance of MS which obscures the true burden of MS, causing patients to struggle to receive the resources and funding that they need.
Palliative Care Research in the Asia Pacific Region: A Systematic Review and Bibliometric Analysis of Peer-Reviewed Publications
(Mary Ann Liebert, 2018-12-20) Cheong, Wing Loong; Mohan, Devi; Warren, Narelle; Reidpath, Daniel
Background: The state of palliative care research is closely linked to the development of palliative care services in a country or region. Objective: To systematically review the current state of palliative care research in the Asia Pacific region and analyze its relationship with the performance of each country in the region on the Economist Intelligence Unit's 2015 Quality of Death Index. Design: Systematic review and bibliographic analysis in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocol 2015 (PRISMA-P). Data Sources: The PubMed/MEDLINE, EMBASE, SCOPUS, CINAHL, and PsychiNFO databases were searched on February 4, 2018. Results: One thousand six hundred sixty-seven articles were reviewed. Eighteen out of 32 countries in the region published research. Around 74.15% (1236) of the articles were produced by high-income countries. Research output (articles per 1 m population) was closely linked to country performance on the Economist Intelligence Unit's 2015 Quality of Death Index (adjusted R2= 0.85). Palliative care research in the region is overwhelmingly focused on cancer (80.13% of articles reviewed). The most common themes of research were “palliative care service (24.45%)” and “clinical” (15.38%). Conclusions: Palliative care research in the region is growing but remains largely centered on the high-income countries, with many low- and middle-income countries having little published research output. Much work is required to drive research in these countries to generate the evidence required for the development of palliative care services. The emphasis on cancer in research also indicates that the needs of patients suffering from noncancer-related diseases may be neglected.
Response to de Groot ‘There is an urgent need for palliative care specialists in MS – Commentary’
(2019-09-13) Cheong, Wing Loong; Mohan, Devi; Warren, Narelle; Reidpath, Daniel
Understanding Cognitive Impairment after Stroke: Stories from a Middle-Income Country
(Springer, 2020-06-11) Hsia Yap, Kwong; Warren, Narelle; Reidpath, Daniel; Allotey, Pascale
Cognitive impairment (CI) is a common aftermath of stroke and associated with higher stroke burden due to its strong relationship with dementia and functional dependence. However, CI is usually underreported due to the prominence of physical disability represented by stroke. Cross-cultural studies on dementia have also demonstrated that the interpretations of dementia symptoms in different communities resulted in different ways of reporting and management strategies when confronted with symptoms. This study presents findings from a community of Malaysian-Chinese stroke survivors living in Malaysia on their understandings of cognitive deficits after stroke. The way stroke survivors thought about CI was also mediated by the cultural and social context that surrounded them. Of interest was the primacy of physical health over the cognitive which resulted in the invisibility of CI within this community, regardless of whether the deficits were mild or severe. Based on these findings, there is a need to rethink how cognitive decline should be observed in realistic community settings.
Understandings of stroke in rural Malaysia: ethnographic insights
(Taylor and Francis Group, 2019-06-06) Yap, Kwong Hsia; Warren, Narelle; Allotey, Pascale; Reidpath, Daniel
Background Stroke is a public health concern in Malaysia but local beliefs and lay understandings of stroke have not been examined before. Explanatory models provide a way for people to make sense of their illness and influence health seeking behaviors, in a locally relevant way. 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.