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BACKGROUND AND OBJECTIVES: The aging experiences of military veterans provide critical insights into what successful aging is and means for later life contexts constrained by distinct health and social needs. Can veterans 'successfully' age when they are exposed to so many stressors with serious health and social consequences for later life? Veterans can offer valuable lessons for developing comprehensive approaches to refining successful aging, ensuring inclusivity of different older populations. Building on Rowe and Kahn's idea of successful aging, we utilize the complementary concept of 'active aging' to explore if there are unique factors, characteristics, and interventions that support active aging in veterans, compared to non-veteran populations. RESEARCH DESIGN AND METHODS: A rapid review and evidence synthesis was conducted across 9 databases in medicine, psychology, anthropology, sociology, and public health to search for peer-reviewed articles and research reports. RESULTS: Findings suggest that programs linking health and social dimensions can support the active aging of veterans, namely interventions promoting active physical and cognitive lifestyle as well as social connectedness and engagement. Such programs and interventions help prevent and combat mental and physical health decline and increase quality of life and well-being. DISCUSSION AND IMPLICATIONS: Findings have implications for veteran and non-veteran populations more broadly, as people can actively age even when they have unique health and social needs.
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OBJECTIVE: To examines the access to reproductive health information by women with physical disabilities in Ho Chi Minh City, Vietnam. METHODS: An ethnography was used in this research. Data collection was conducted by using observations, photovoice, and in-depth interview with 30 participants, which including 20 women with physical disabilities, 5 healthcare providers, and 5 key informants. RESULTS: Research findings revealed that women with physical disabilities had variable reproductive health knowledge with some women being more informed than others. They obtained reproductive health knowledge via four pathways: family, school, community, and self-learning via peers and the Internet. They learned different types of information from these sources, but their reproductive health resources remained limited, leading to very little reproductive health knowledge for women. CONCLUSION: Most women in this research are not educated by family members about reproductive health issues due to the Vietnamese cultural and social norms about sexual and reproductive health and ideas about disability. Some women have the opportunity to complete grade 9 and higher education levels, hence they are able to access authorized information via biology classes and other sexual and reproductive health training courses. Some recommendations are given including [1] Comprehensive sexual and reproductive health education should be taught in schools; [2] The Ministry of Education and Training works with NGOs to provide more authoritative sexual and reproductive health documents or workplace training for all people with disabilities; [3] Social policy makers in Vietnam should review their policies regarding improving the quality of life of people with disabilities.
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BACKGROUND: Studies of the lived experience of chronic obstructive pulmonary disease (COPD) reveal a number of challenges patients face when interacting with healthcare providers that may be exacerbated by unwillingness or inability to quit smoking. However, none have explored, in-depth, primary care experiences among patients with COPD in community healthcare settings. AIMS/ OBJECTIVE: The study investigated healthcare experiences of patients living independently in the community with COPD who smoked or had recently quit (at most within the last 5 years), seeking care in primary care settings. METHOD: An Interpretative Phenomenological Analysis (IPA) involving thirteen participants purposively recruited from social media posts in COPD and carer support groups, general community groups, community noticeboards and paid adverts on social media. In-depth interviews were held between February and April 2022 by phone or Zoom™ and explored patient experience of primary care, focusing on how smoking patterns, addiction and stigma impact upon and shape these experiences. RESULTS: Participants were aged between 45 to 75 years. Nine were female and two thirds were current smokers. Problematic experiences including time-constrained consultations, having to self-advocate for care " go digging myself and then go and see him and say, can we do this, can we do that type of thing?" and guilt about smoking were common. Positive care experiences described non-judgemental interpersonal interactions with doctors, timely referral, proactive care and trust "I have an actual great trust for my GP they're awesome, they'll look after you". Participants described how their care experience shifted as primary care adapted care delivery during COVID-19. CONCLUSIONS: Pro-active, empathetic care from general practitioners is desired from patients living with COPD. Stigma and fear of judgement was an important underlying driver of negative care experiences contributing to delayed help seeking from general practitioners.
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COVID-19 , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Masculino , Femenino , Persona de Mediana Edad , Anciano , Investigación Cualitativa , Enfermedad Pulmonar Obstructiva Crónica/terapia , Fumar , Atención Primaria de SaludRESUMEN
As the name 'talk therapy' suggests, a key aim of alcohol and other drug counselling, psychotherapy and other talk therapies is to discuss issues, concerns and feelings with a health professional. Implicit here is the therapeutic value of talking through issues with a trained professional. But as with all interactions, therapeutic encounters involve silences and pauses as key aspects of the communicative process. Despite their ubiquity in the therapeutic encounter, research tends to either dismiss silences as inconsequential or as having undesirable effects, such as generating awkwardness or even disengagement from treatment. Drawing on Latour's (2002) concept of 'affordance' and a qualitative study of an Australian alcohol and other drug counselling service, we explore the varied functions of silences in online text-based counselling sessions. For clients, these include the role of silence in affording opportunities to engage in other everyday practices, such as socialising, caregiving or working - practices that can generate comfort and reduce distress, which in turn may support the therapeutic encounter. Similarly, for counsellors, temporal silences provide opportunities to confer with other counsellors and provide tailored care. However, protracted silences can raise concerns about the safety and wellbeing of clients who do not respond promptly or who exit encounters unexpectedly. Similarly, the sudden cessation of online care encounters (often associated with technical difficulties) can leave clients feeling frustrated and confused. In tracking these diverse affordances of silence, we draw attention to its generative potential in care encounters. We conclude by exploring the implications of our analysis for conceptions of care that underpin alcohol and other drug treatment.
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Consejo , Personal de Salud , Humanos , Australia , Emociones , PsicoterapiaRESUMEN
Background: Studies investigating lived experiences of patients with COPD raise important concerns about interactions with healthcare professionals. Patients often describe feelings of guilt and shame associated with their COPD and may experience stigma and poor patient experience of care. The aims and objectives of the present study were to systematically scope and synthesise findings from peer-reviewed qualitative studies describing healthcare experiences of patients living with COPD across community care settings. Methods: A meta-ethnography was undertaken. Database searches were performed in Ovid MEDLINE, PsychINFO, Ovid Emcare, CINAHL Plus and Sociological Abstracts. Eligible qualitative studies were included. Study screening and data extraction was performed by two independent reviewers. A "line-of-argument" synthesis and deductive and inductive analysis was used to identify key themes, where the deductive element aligned to Wong and Haggerty's six key dimensions of patient experiences. Results: Data from 23 studies were included. Experiences and their meaning to patients were explored within the context of six domains of patient experience including access, interpersonal communication, continuity and coordination, comprehensiveness and trust. Inductive coding revealed emotion, stigma, identity and vulnerability shaped healthcare experiences of adults with COPD. Implications: Experiences often fell short of what was expected and needed in community settings. Adopting strategies to improve experiences of care in the community can be expected to improve self-management and contribute to improved health outcomes and quality of life. These strategies should take account of vulnerability, stigma and emotions such as guilt and blame that are potent affective drivers of the experience of care for patients with COPD.
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BACKGROUND: The provision of peer support from those who have already made positive adjustments to amputation is recommended for people incurring a major limb amputation; however, few receive this service. OBJECTIVE: From a program perspective, determine the cost, impact, and willingness to pay for an Amputee Peer Support Program. STUDY DESIGN: Cost analysis. METHODS: Cost of the Amputee Peer Support Program included a cost analysis of program data over a 5-year time horizon (2013-2018) reported in Australian Dollars 2018/2019. Impact and willingness to pay for an Amputee Peer Support Program was determined through surveys of the 3 participant groups: referring health professionals, program volunteers, and program participants. RESULTS: Over 5 years, there were 793 program participants, serviced by 256 program volunteers, for a cost of $631,497. The cost per program participant was $796. Thirty-eight health professionals, 86 program volunteers, and 12 program participants reported on impact and willingness to pay. The Program was reported to have a positive impact on all participant groups. The themes of access to resources and information and the provision of social and emotional well-being were identified across all 3 groups as being important. All 3 groups reported a higher willingness to pay for the health service (range $113-$450), National Disability Insurance Scheme ($156-$432), and private health insurance ($153-$347), and a lower willingness to pay for the program participant ($23-$49). CONCLUSION: Amputee peer support had a positive impact on those receiving and providing the service. Amputee peer support is likely to be a powerful yet inexpensive addition to routine care.
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Amputados , Humanos , Australia , Encuestas y Cuestionarios , Amputación QuirúrgicaRESUMEN
PURPOSE: To evaluate a dog-walking program (called "Dog Buddies") designed to address the need for evidence-based programs that create opportunities for people with cognitive disabilities to be more socially included in mainstream society. The research question was: Does community dog walking foster social interaction for people with cognitive disabilities? MATERIALS AND METHODS: Single-case experimental design was used with four individuals (three with intellectual disability; one with Acquired Brain Injury (ABI)) recruited via two disability service providers in Victoria. Target behaviours included frequency and nature of encounters between the person with disability and community members. Change was measured from baseline (five community meetings with a handler but no dog) to intervention period (five meetings minimum, with a handler and a dog). Semi-structured interviews, audio-recorded and transcribed verbatim, provided three participants' subjective experiences of the program. RESULTS: Dog Buddies increased the frequency of encounters for all participants. The presence of the dog helped to foster convivial encounters, community members were found to be more welcoming, and some participants were recognised or acknowledged by name over time in the intervention phase. CONCLUSIONS: The dog-walking program offered a simple means of influencing the frequency and depth of community-based social interactions for people with cognitive disabilities.IMPLICATIONS FOR REHABILITATIONThe co-presence of people with disabilities in the community with the general population does not ensure social interaction occurs.Both disability policy, and the programs or support that is provided to people with disabilities, needs to have a strong commitment to the inclusion of people with disabilities in mainstream communities.Dog Buddies is a promising example of a program where the presence of a pet dog has been demonstrated to support convivial, bi-directional encounters of people with cognitive disabilities and other community members.Dog-walking offers a simple means of influencing the frequency and depth of community-based social interactions for people with cognitive disabilities.
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Personas con Discapacidad , Discapacidad Intelectual , Humanos , Animales , Perros , Caminata , Discapacidad Intelectual/psicología , CogniciónRESUMEN
BACKGROUND AND OBJECTIVES: While research on loneliness in later life has increased during the coronavirus disease 2019 (COVID-19) pandemic, we still lack diverse qualitative approaches capturing lived experiences of lonely older adults. Approaches to research with older adults instead of on them are also scant in gerontological literature on loneliness. Through solicited diaries, this study aimed to explore how older Australians who were already lonely before the pandemic managed lockdowns (stay-at-home orders) in Victoria, Australia, which lived through one of the longest lockdowns in the world. RESEARCH DESIGN AND METHODS: This article is based on qualitative diaries completed by 32 older adults (aged 65 and older). Diaries provide a 'live' document where participants become active research partners, recording and sharing their perceptions and experiences. This method is useful to capture sensitive issues, but to the best of our knowledge has not been employed in loneliness studies. Data were thematically analyzed through the identification of themes within and across diaries. RESULTS: Loneliness was defined by participants as a detrimental absence of companionship and meaningful social interactions. For most, lockdowns exacerbated loneliness, presented new triggers, and upended coping strategies. The disruption of the 'emotion work' involved with managing loneliness led to a reconfiguration of response strategies, including through digital technology, which brought both challenges (e.g., digital ageism) and opportunities (e.g., novel communication forms). DISCUSSION AND IMPLICATIONS: Understanding how older people living alone define and respond to loneliness in diverse contexts-for example, before and during a pandemic that restricts social interaction-provides critical insights to inform interventions to tackle loneliness.
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COVID-19 , Soledad , Humanos , Anciano , Soledad/psicología , Aislamiento Social/psicología , COVID-19/epidemiología , Pandemias , Control de Enfermedades Transmisibles , Victoria/epidemiologíaRESUMEN
PURPOSE: Assistive technologies (AT) perform an important social role, interacting with cultural systems to produce or hinder accessibility to biosocial environments. This interaction profoundly shapes not only how an individual body can be experienced by users but also produce and hinder accessibility to biosocial environments. AT users have historically been viewed through a medical model, which deems them disabled by their impairments and by dominant ableist narratives. Therefore, this paper serves to provide an insight into the importance of ageing with and into AT. This paper aims to investigate polio survivors' and diabetic amputees' experiences of assistive technologies in order to better understand impacts upon narrative and identity. By applying an anthropological and sociological lens, a holistic view of the experiences of polio survivor and amputee AT users is developed. METHOD: This paper draws on 16 in-depth interviews with polio survivors and diabetic amputees in the United States (US) and Australia, which were analysed using an experience-centered narrative approach. Both projects were approved by ethics boards. All participants provided written consent. RESULTS: Five themes were identified: a) disruption to biographies, which reflected AT impact on how narratives become altered; b) impacts to autonomy, which reflected the importance of regaining previous daily activities; c) re-engaging with community life, which highlighted how AT supported participation in valued activities; d) self-perceptions of assistive technologies, which act in opposition to external perspectives and challenge ableist narratives; and e) an intergenerational comparison of new and older AT users highlights the importance of temporalities. CONCLUSION: This paper offers new perspectives on ageing with assistive technologies, with a focus on identity and narrative. The importance of this paper is to contribute to the existing literature that demonstrates the cultural implications that arise through embodiment and assistive technologies.IMPLICATIONS FOR REHABILITATIONThe use of assistive technology can help individuals regain function, but the individual circumstances require considerationThe use of assistive technology is a complex entanglement of bodies, environments, biographies, and imagined futures.The use of assistive technology can provide participants autonomy over their narratives and assist with maintaining their identities.
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Australia has recently legalised mitochondrial donation. However, key ethical and legal issues still need to be addressed. This paper maps the relevant issues and offers some suggestions for how they ought to be resolved.
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Mitocondrias , Técnicas Reproductivas Asistidas , Humanos , AustraliaRESUMEN
BACKGROUND: Nurses are vital in improving population health globally. Yet, some female students leave nursing programs due to pregnancy and early motherhood, which contributes to a global shortage in the nursing workforce. OBJECTIVES: To evaluate an existing support mechanism and identify unmet needs of nursing students during pregnancy and transition to motherhood in the academic environment, including clinical placement. DESIGN: Qualitative research, case study design. SETTINGS: One university in Australia, interviews conducted in December 2020-February 2021 prior to the COVID-19 pandemic. PARTICIPANTS: Students who were pregnant or transitioned to motherhood during their enrolment in a pre-registration Masters level nursing program. METHOD: Data collected through semi-structured interviews was thematically analysed. RESULTS: While ten students, who were pregnant or had a baby during the period of June 2017 to December 2020 expressed interest in participating in the study, six students were interviewed about their experiences, challenges and views on academic supports provided during pregnancy and early motherhood. The following themes were identified: 1) Disclosing pregnancy: Barriers and supports; 2) Navigating placements, assessments and exams; 3) Studying in early motherhood 4) Stressors and pressures specific to international students. CONCLUSION: Opportunities for interventions at critical stages for students are identified, including barriers to the take up existing supports. Key recommendations are outlined to enhance the study experience of nursing students during pregnancy and early motherhood.
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COVID-19 , Bachillerato en Enfermería , Estudiantes de Enfermería , Femenino , Humanos , Pandemias , Embarazo , Investigación CualitativaRESUMEN
Background: Bangladesh is a lower-middle-income country affected by a severe lack of mental health service availability due to a scarcity of mental health experts, limited mental health literacy, and community stigma. In other low and middle-income countries, the online provision of mental health care services has addressed issues affecting service availability, accessibility, mass awareness of services, and stigma. Objective: The current study sought to understand stakeholders' perceptions of the potential of digital media-based mental health care delivery in strengthening Bangladesh's mental health system. Method: Online in-depth interviews were conducted with seven psychiatrists and eleven people with lived experiences of mental health issues. In addition, two online focus groups were conducted with ten psychologists and nine mental health entrepreneurs. A thematic analysis of the audio transcriptions was used to identify themes. Result: Stakeholders perceived that the benefits of digital media-based mental health services included the potential of increasing the awareness, availability, and accessibility of mental health services. Participants recommended: the rehabilitation of existing pathways; the use of social media to raise awareness; and the implementation of strategies that integrate different digital-based services to strengthen the mental health system and foster positive mental health-seeking behaviors. Conclusion: Growing mental health awareness, combined with the appropriate use of digital media as a platform for distributing information and offering mental services, can help to promote mental health care. To strengthen mental health services in Bangladesh, tailored services, increased network coverage, and training are required on digital mental health.
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BACKGROUND: Depression is a common neuropsychiatric syndrome in Huntington's disease (HD) and has debilitating consequences, including poorer sleep, exacerbation of cognitive and functional decline, and suicidality. To date, no published studies have documented the lived experience of depression in HD, despite clinical evidence that depression may be experienced differently in HD compared to the general population. OBJECTIVE: The aim of this study was to investigate the lived experiences of depression in people with the CAG expansion for HD using qualitative methods. METHODS: We conducted semi-structured interviews with HD CAG expansion carriers who had current or previous experiences of depression, until data saturation was achieved. This resulted in interviews from 17 HD CAG expansion carriers (11 premanifest, 6 manifest) which were analyzed using thematic analysis. RESULTS: The four key themes that emerged related to the temporal characteristics of depression in HD, the qualitative changes associated with depression, psychosocial stressors perceived to contribute to depression, and the perception of depression as an endogenous feature of HD. CONCLUSION: This study provides an enriched understanding of the unique characteristics of depression in HD, and the attributions that CAG expansion carriers make for their depression symptoms. The themes identified in this study can be used to guide more targeted assessment and treatment of depression in HD.
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Enfermedad de Huntington , Depresión/etiología , Heterocigoto , Humanos , Enfermedad de Huntington/complicaciones , Enfermedad de Huntington/psicología , SueñoRESUMEN
PURPOSE: Paediatric acquired brain injury (ABI) negatively impacts parental wellbeing and family functioning. Adaptive coping, that is behaviours promoting emotional wellbeing and addressing distressing problems, may support wellbeing and family functioning. This study compared wellbeing, coping, and family functioning between parents of a child with ABI and parents in the community, and examined coping as a predictor of wellbeing and family functioning. METHODS: Forty parents of a child with ABI and 40 parents in the community participated in this cross-sectional survey using the Personal Wellbeing Index, Coping Scale for Adults Short Form, McMaster Family Assessment Device (General Functioning Subscale). RESULTS: The ABI group had statistically significantly lower wellbeing, t(68.70) = -4.01, p < 0.001, lower adaptive coping, t(73.95) = -3.27, p = 0.002, and poorer family functioning, t(77) = 4.26, p < 0.001. Family composition (single-parent/couple), having a child with ABI, adaptive coping, and non-productive coping predicted 47.7% of the variance in wellbeing, F(5, 70) = 12.75, p < 0.001. Parental education, having a child with ABI, and non-productive coping predicted 35.9% of the variance in family functioning, F(5, 69) = 7.71, p < 0.001. CONCLUSIONS: Adaptive coping may contribute to better family outcomes in paediatric ABI.Implications for rehabilitationPaediatric ABI may have a significant impact on the child with ABI and the family, leading to poorer outcomes for some families.This study suggested that parents of a child with ABI use adaptive coping less than parents in the community but do not differ in the use of non-productive coping.Families need long-term targeted support to meet the challenges paediatric ABI presents and may benefit from interventions which actively seek to change parental coping strategies.
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Lesiones Encefálicas , Padres , Adulto , Niño , Humanos , Estudios Transversales , Padres/psicología , Adaptación Psicológica , Lesiones Encefálicas/psicologíaRESUMEN
Antimicrobial resistance (AMR) is a global public health crisis that is now impacted by the COVID-19 pandemic. Little is known how COVID-19 risks influence people to consume antibiotics, particularly in contexts like Bangladesh where these pharmaceuticals can be purchased without a prescription. This paper identifies the social drivers of antibiotics use among home-based patients who have tested positive with SARS-CoV-2 or have COVID-19-like symptoms. Using qualitative telephone interviews, the research was conducted in two Bangladesh cities with 40 participants who reported that they had tested positive for coronavirus (n = 20) or had COVID-19-like symptoms (n = 20). Our analysis identified five themes in antibiotic use narratives: antibiotics as 'big' medicine; managing anxiety; dealing with social repercussions of COVID-19 infection; lack of access to COVID-19 testing and healthcare services; and informal sources of treatment advice. Antibiotics were seen to solve physical and social aspects of COVID-19 infection, with urgent ramifications for AMR in Bangladesh and more general implications for global efforts to mitigate AMR.
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Antibacterianos/uso terapéutico , Programas de Optimización del Uso de los Antimicrobianos/métodos , COVID-19/epidemiología , Farmacorresistencia Bacteriana , Adulto , Bangladesh , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pandemias , Investigación Cualitativa , Factores SocialesRESUMEN
BACKGROUND: The COVID-19 pandemic has uncovered the ways in which disabled people are made more vulnerable due to structural inequalities. These vulnerabilities are the result of the interaction between individual and structural factors that shape how risk is experienced by disabled people. In Australia, these vulnerabilities are influenced by the way disability services and care for disabled people are delivered through a consumer-directed approach. We analysed the policies and documentation made by the Australian Government and state and territory governments during the pandemic to explore whether these were disability-inclusive. We aimed to unpack how these policies shaped disabled people as vulnerable citizens. METHODS: Guided by documentary research, we used framework analysis to examine the policies of the Australian Government and state and territory governments. We analysed legislation that was given royal assent by the federal, state and territory governments, and documents (reports, fact sheets, guidance documents, etc.) published by the federal government and the state of Victoria (given that this state experienced the brunt of the epidemic in Australia) between February 2020 to August of 2020. RESULTS: We found that most of the resources were not aimed at disabled people, but at carers and workers within disability services. In addition, most policies formulated by the Australian Government were related to the expansion of welfare services and the creation of economic stimulus schemes. However, while the stimulus included unemployed people, the expansion of benefits explicitly excluded disabled people who were not employed. Most of the legislation and documents offered accessibility options, though most of these options were only available in English. Disability oriented agencies offered more extensive accessibility options. CONCLUSIONS: The findings indicate a large number of documents addressing the needs of disabled people. However, disability-inclusiveness appeared to be inconsistent and not fully considered, leaving disabled people exposed to greater risk of COVID-19. Neoliberal policies in the health and welfare sector in Australia have led to an individualisation of the responsibility to remain healthy and a reliance on people as independent consumers. Governments need to take a clear stance towards the emergence of such a discourse that actively disvalues disabled people.
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COVID-19/epidemiología , Personas con Discapacidad , Gobierno , Pandemias , Políticas , Australia/epidemiología , Guías como Asunto , Humanos , Medición de Riesgo , Poblaciones VulnerablesRESUMEN
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.
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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 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.
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Esclerosis Múltiple , Actividades Cotidianas , Humanos , Malasia , Investigación Cualitativa , Calidad de VidaRESUMEN
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. 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.