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Fulltext Employment of patients with multiple sclerosis: the influence of psychosocial-structural coping and context

Vijayasingham L, Mairami FF

Degener Neurol Neuromuscul Dis, 2018;8:15-24.
PMID: 30050385 DOI: 10.2147/DNND.S131729

Patients with multiple sclerosis tend to report higher levels of work difficulties and negative outcomes, such as voluntary and involuntary work termination and reduced work participation. In this article, we discuss the complex interactions of disease, personal coping strategies, and social and structural factors that contribute to their work experiences and outcomes. An overview of the coping strategies and actions that leverage personal and context-level factors and dynamics is also provided to support the overall goal of continued work in patients with MS.
Contextual factors that shape recovery after stroke in Malaysia

Mairami FF, Warren N, Allotey PA, Reidpath DD

Disabil Rehabil, 2020 11;42(22):3189-3198.
PMID: 30950658 DOI: 10.1080/09638288.2019.1588399

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.Implications for rehabilitationIdentification of contextual factors provides a background for the understanding of the stroke experience.Incorporation of religion into rehabilitation could support and maintain hope in recovery for the survivors and aid acceptance.A collaboration of healthcare professionals with traditional medicine therapists may prove beneficial for the rehabilitation of stroke survivors in Malaysia.
Documenting the impact of stroke in a middle-income country: a Malaysian case study

Mairami FF, Warren N, Allotey PA, Mak JS, Reidpath DD

Disabil Rehabil, 2020 01;42(1):102-113.
PMID: 30183424 DOI: 10.1080/09638288.2018.1493544

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.Implications for rehabilitationThe impact of stroke on survivors and lack of specialized stroke care compromise the recovery process and quality of life for stroke survivors in low and middle-income countries.Support from the family and reinforcement of religious coping were judged to successfully aid recovery.Physical and emotional impairments as well as psychosocial wellbeing of survivors in the context of environmental factors need to be addressed.
Adaptive invention: independence and mobility through modifications

Mairami FF, Allotey P, Warren N, Mak JS, Reidpath DD

Disabil Rehabil Assist Technol, 2018 10;13(7):658-664.
PMID: 28836873 DOI: 10.1080/17483107.2017.1369586

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.