Epilepsy: Attitude and Awareness among Students of Professional Social Work

Epilepsy is one of the most common neurological disorders that affect approximately 50 million peopleworldwide, with the prevalence of 1% in the population.Nearly 80% of people with epilepsy are found indeveloping countries, where the disease remains a majorpublic health problem. It is not only because of its healthimplications but also for its social, cultural, psychologicaland economic effects. The person with epilepsy goesthrough many difficulties such as unpredictability of theseizures, adjustmental demands on personal and worklife, family coping, problems in marital relationship,issues surrounding children, economic burden, andstigma about the disease apart from the access totreatment. Managing a chronic illness such as epilepsyinvolves more than managing medical problems. Socialworkers, as change agents, can fulfil their roles aseducators, counsellors, and patient-advocates by helpingpatients and families to gain insight into the implicationsof chronic illness. The present cross sectional study wasconducted among the Master of Social Work (MSW)students specialising in Medical and Psychiatric SocialWork, with an attempt to look at the Knowledge and Attitude about Epilepsy. Thirty one students of Master ofSocial Work course with Medical and Psychiatric SocialWork (males = 9; females = 22; age = 23.61, range 22-28years) from different colleges in South India filled thequestionnaire developed to assess the knowledge andattitudes about Epilepsy. All the respondents had heardabout Epilepsy. The study revealed that while there isgood awareness about Epilepsy among the students,majority of them felt that persons with Epilepsy shouldhave restrictions in movement (84%) and that they havelimitations in employment (58%). The implications of thestudy from knowledge development, research andpractice are discussed

Pathways to care for people with dementia in India: an exploratory study using case vignettes

Background: Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India. Aim: This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia. Methods: As part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, and to contribute to an analysis of dementia care policies and systems in India, case vignettes were used to illustrate the diverse situations that people with dementia and their families may experience when seeking care in the Indian context. Eight hypothetical, but realistic cases of people with dementia were created by a multi-disciplinary team with experience in dementia care in India, to map out the likely care journeys of each case. Results: Investigating eight diverse care trajectories of people living with dementia highlighted important patterns relevant to the Indian context. We identified delays in dementia diagnosis to be attributed to low awareness of dementia among the general public and medical professionals in addition to a critical shortage of specialist services involved in facilitating dementia diagnosis. Post-diagnosis, support was recognized as limited and associated with considerable out-of-pocket (OOP) costs. Families primarily provide long-term care for people with dementia till end of life. Conclusions and Recommendations: Several steps need to be taken in order to improve dementia care in India. Increasing dementia awareness among both medical professionals and general public is essential. Shortages in dementia specialists can be addressed in part through appropriate task shifting. Lastly, more research is needed to develop evidence-based community interventions to support informal care provision for persons with dementia in India

Beyond the project: building a strategic theory of change to address dementia care, treatment and support gaps across seven middle-income countries

Evidence from middle-income countries indicates high and increasing prevalence of dementia and need for services. However, there has been little investment in care, treatment or support for people living with dementia and their carers. The Strengthening Responses to Dementia in Developing Countries (STRiDE) project aims to build both research capacity and evidence on dementia care and services in Brazil, Indonesia, India, Jamaica, Kenya, Mexico and South Africa. This article presents the Theory of Change (ToC) approach we used to co-design our research project and to develop a strategic direction for dementia care, treatment and support, with stakeholders. ToC makes explicit the process underlying how a programme will achieve its impact. We developed ToCs in each country and across the STRiDE project with researchers, practitioners, people living with dementia, carers and policymakers at different levels of government. This involved (1) an initial ToC workshop with all project partners (43 participants); (2) ToC workshops in each STRiDE country (22–49 participants in each); (3) comparison between country-specific and overall project ToCs; (4) review of ToCs in light of WHO dementia guidelines and action plan and (5) a final review. Our experiences suggest ToC is an effective way to generate a shared vision for dementia care, treatment and support among diverse stakeholders. However, the project contribution should be clearly delineated and use additional strategies to ensure appropriate participation from people living with dementia and their carers in the ToC process

Effect of angiotensin-converting enzyme inhibitor and angiotensin receptor blocker initiation on organ support-free days in patients hospitalized with COVID-19

IMPORTANCE Overactivation of the renin-angiotensin system (RAS) may contribute to poor clinical outcomes in patients with COVID-19. Objective To determine whether angiotensin-converting enzyme (ACE) inhibitor or angiotensin receptor blocker (ARB) initiation improves outcomes in patients hospitalized for COVID-19. DESIGN, SETTING, AND PARTICIPANTS In an ongoing, adaptive platform randomized clinical trial, 721 critically ill and 58 non–critically ill hospitalized adults were randomized to receive an RAS inhibitor or control between March 16, 2021, and February 25, 2022, at 69 sites in 7 countries (final follow-up on June 1, 2022). INTERVENTIONS Patients were randomized to receive open-label initiation of an ACE inhibitor (n = 257), ARB (n = 248), ARB in combination with DMX-200 (a chemokine receptor-2 inhibitor; n = 10), or no RAS inhibitor (control; n = 264) for up to 10 days. MAIN OUTCOMES AND MEASURES The primary outcome was organ support–free days, a composite of hospital survival and days alive without cardiovascular or respiratory organ support through 21 days. The primary analysis was a bayesian cumulative logistic model. Odds ratios (ORs) greater than 1 represent improved outcomes. RESULTS On February 25, 2022, enrollment was discontinued due to safety concerns. Among 679 critically ill patients with available primary outcome data, the median age was 56 years and 239 participants (35.2%) were women. Median (IQR) organ support–free days among critically ill patients was 10 (–1 to 16) in the ACE inhibitor group (n = 231), 8 (–1 to 17) in the ARB group (n = 217), and 12 (0 to 17) in the control group (n = 231) (median adjusted odds ratios of 0.77 [95% bayesian credible interval, 0.58-1.06] for improvement for ACE inhibitor and 0.76 [95% credible interval, 0.56-1.05] for ARB compared with control). The posterior probabilities that ACE inhibitors and ARBs worsened organ support–free days compared with control were 94.9% and 95.4%, respectively. Hospital survival occurred in 166 of 231 critically ill participants (71.9%) in the ACE inhibitor group, 152 of 217 (70.0%) in the ARB group, and 182 of 231 (78.8%) in the control group (posterior probabilities that ACE inhibitor and ARB worsened hospital survival compared with control were 95.3% and 98.1%, respectively). CONCLUSIONS AND RELEVANCE In this trial, among critically ill adults with COVID-19, initiation of an ACE inhibitor or ARB did not improve, and likely worsened, clinical outcomes. TRIAL REGISTRATION ClinicalTrials.gov Identifier: NCT0273570

Psychiatric social workers in legal aid services in hospitals: Exploring roles in Indian context

Mental health and legal problems are interlinked in many ways. People facing legal issues may develop mental health problems, and people with mental illness and family also face legal issues. In India, Legal Services Authorities Act, 1987 gives provision for free legal aid services for the poor sections of society. Authors explain the roles of psychiatric social workers in legal aid services in hospitals. Social case work as a method of social work is suitable in legal aid services. Counseling, referrals, collateral contacts, advocacy and networking are major services from the social work perspective. Knowledge about laws and mental illness is essential for social workers to work in legal aid clinics (LACs)

Scope of free legal aid clinics at psychiatric hospitals in India

Background: Individuals suffering from mental illness and their families are vulnerable to face legal issues and the very nature of their illness may limit accessibility and effective utilisation of legal services. A few hospitals in India have free Legal Aid Clinics (LAC) but there is dearth of literature on the scope of LAC. Aims and objective: Objective was to understand the scope of LAC at psychiatric hospitals by analysing the profile of services users (SUs) and services provided at National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, India. Material and methods: Analysed LAC records of randomly selected 100 SUs utilising services in the free LAC. All the SUs were assessed using a pre-designed proforma during their visit to the clinic. Results: Persons with mental illness (PwMI), their family members, and others without any psychiatric illnesses as SUs from various occupational, religious, socioeconomic background has approached the LAC. Their legal issues were various such as familial, property, mental health act related, labour laws, and other legal issues. The free legal aid service was utilised to avail various services such as legal advice, referral services, and brief mental health services such as supportive counselling by a multidisciplinary team consisting of psychiatric social workers and lawyers. Conclusion: Free legal aid services in hospitals are very useful in providing accessible and affordable legal help for the individuals and families affected especially for PwMI or other adversities. LACs need to be implemented in all psychiatric hospitals across the country

Neuropalliative care in India – Barriers, challenges and future directions

Neuropalliative care is an emerging sub-specialty of neurology and palliative care that aims to relieve suffering from symptoms, reduce distress and improve the quality of life of people with life-limiting neurological conditions and their family caregivers. As advances are being made in the prevention, diagnosis, and treatment of neurological illnesses, there is an increasing need to guide and support patients and their families through complex choices involving immense uncertainty and important life-changing outcomes. The unmet need for palliative care in neurological illnesses is high, especially in a low-resource setting like India. This article discusses the scope of neuropalliative care in India, the barriers and challenges that impede the specialty's development, and the factors that could facilitate the development and scale-up delivery of neuropalliative services. The article also attempts to highlight priority areas for advancing neuropalliative care in India which include context-specific assessment tools, sensitization of the healthcare system, identification of intervention outcomes, the need for developing culturally sensitive models based on home-based or community-based care, evidence-based practices, and development of manpower and training resources

Service users' perspectives on free legal aid services in India

Background of the Study: Free legal aid clinics (LACs) are functioning in few hospitals in India under the provision of Legal Services Authorities Act, 1987. Currently, no literatures are available on the service user's (SUs) perspectives on services at free LACs. Methodology: The current study aimed to understand the perspective of SUs of free LAC working at National Institute of Mental Health and Neuro Sciences, Bangalore, India. Forty SUs were randomly selected, their records were examined, and they were contacted over the phone to understand their perspectives on availed services from LAC. Results: Authors could contact and completed telephonic interviews with 32 SUs. Majority (53.1%) were diagnosed with psychiatric disorders and intellectual disability. They approached LAC for various legal issues related to property, labor laws, mental health act, family/marital issues, and others. Legal advices and referrals to appropriate centers were the few among the various services offered. Telephonic calls to understand perspectives of SUs showed; legal problems solved (15.6%), in the process (37.5%), not solved (15.6%), and yet to start the legal process (31.3%). Majority (87.5%) reported LAC service is useful, 65.6% were able to follow the instructions, 56.3% reported that they do not require any additional help, and 96.9% reported that they will recommend LAC service to others. An average score of 7.72 (±1.67) on visual analog scale was rated by the SUs which indicated high satisfaction. Conclusion: Free legal aid services are essential in hospitals, especially in psychiatric hospitals, to protect legal rights, and to address legal issues of the poorer sections in the society

Understanding the economics of dementia at the family level in India

The dementia care system in India relies on families of people living with advanced dementias (PLWD) to support their care – either providing it themselves, possibly necessitating foregoing opportunities for paid work, or paying for it from the unorganised care labour sector. The sustainability and quality of India’s dementia care system therefore depends on the extent to which these economic costs are bearable to families. While there is some evidence about the negative consequences of meeting these costs (Narayan et al. 2015), there has been little engagement with what ‘families’ means in this context. This paper critically engages with the implied expectation that both wealth and expenditure – that is, dementia care costs and the resources to meet them - are shared among adult members of Indian families to explore: 1.families’ decision-making around who can and cannot be appropriately called upon to provide different types of care; 2.the extent to which the families of PLWD experience caregiving as individuals or as family units; 3.the methodological implications of this for understanding the economic impact of providing dementia care and the salience of this for positioning dementia as a public health priority. The paper is informed by ongoing analysis of a series of in-depth, qualitative interviews (N=55) with 24 ostensibly low and middle-income family members of people living with moderate or severe dementias in East and South India, in which reports of income or wealth appear to be contradictory, ambiguous, and associated with family members’ understandings of dementia and dementia care