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.
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.
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.