A5103187747- Muscle Physiology and Disorders
- Neurogenetic and Muscular Disorders Research
- Amyotrophic Lateral Sclerosis Research
- Family and Disability Support Research
- Family Caregiving in Mental Illness
- Cardiomyopathy and Myosin Studies
- Cerebral Palsy and Movement Disorders
- Prosthetics and Rehabilitation Robotics
- Palliative Care and End-of-Life Issues
- RNA Research and Splicing
- Autism Spectrum Disorder Research
- RNA modifications and cancer
- Long-Term Effects of COVID-19
- Medical and Biological Ozone Research
- Genetic Neurodegenerative Diseases
- Pediatric Pain Management Techniques
- Chronic Disease Management Strategies
- Parkinson's Disease Mechanisms and Treatments
- RNA regulation and disease
National Institute of Mental Health and Neurosciences
2019-2024
Montfort Social Institute
2024
Aim: Amyotrophic lateral sclerosis (ALS) or motor neuron disease (MND) is a progressive degenerative disorder that can have significant debilitating impact. Few studies explored living with ALS in the developing countries. The study aims to understand relationship between functionality, quality of life, and caregiver burden sociocultural scenario India. Methods: A cross-sectional descriptive was performed among 30 persons their caregivers (men = 19; women 11) receiving treatment from...
<h3>BACKGROUND AND PURPOSE:</h3> Duchenne muscular dystrophy is an X-linked disorder characterized by progressive muscle weakness and prominent nonmotor manifestations, such as a low intelligence quotient neuropsychiatric disturbance. We investigated WM integrity in patients with using DTI. <h3>MATERIALS METHODS:</h3> Fractional anisotropy mean, axial, radial diffusivity (DTI measures) were used to assess microstructural along neuropsychological evaluation (<i>n</i> = 60) controls 40). Exon...
Motor neuron disease (MND) is a progressive neurodegenerative disease. Ideal management plan in MND includes palliative care initiated from the time of diagnosis. At present, most conditions are cared for at home. Neuropalliative an emerging concept India and social workers integral team members this process. The primary aims study were to explore (a) caregivers' experiences end-of-life stage, (b) sources support individuals their caregivers with stage. In-depth interviews conducted seven...
Background: Electrocardiography (ECG) remains an excellent screening tool for cardiac assessment in Duchenne muscular dystrophy (DMD), but accurate interpretation requires comparison with age-matched healthy controls. Objective: We examined various ECG parameters children DMD, Methods: Standard 12-lead tracings of serial patients were screened quality and selected. Controls healthy, school-going children. Both quantitative qualitative analyzed. Results: After screening, ECGs from 252 DMD...
The neuropalliative approach in a hospital setting for neuromuscular disorders is essentially multidisciplinary focus and involves co-ordinated interventions. This case report describes an intensive management through telehealth services provided from context South India psychosocial interventions adolescent with Duchenne Muscular Dystrophy. Case during the COVID-19 pandemic were sixteen sessions over telephone, focusing on need assessment, service plan development, implementation,...
Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative essential the affected children.To explore parent's understanding services available children with and challenges faced by them in utilizing same.A cross-sectional qualitative exploratory study was conducted among six families boys diagnosed DMD. A semi-structured interview guide prompts used to conduct in-depth...
Motor neuron disease (MND) is a progressive neuromuscular disorder that can have significant and debilitating impact on the affected patient families. Spouses are primary carers for persons with MND in India, life of person their spouse never same after diagnosis.The objective was to explore lived experience spouses diagnosed MND.A qualitative exploratory study three-point interviews conducted caregivers two who were receiving treatment from national tertiary referral care center...
Children with muscular dystrophy go through the challenge of moving into adolescence compounded living a debilitating muscle disease. This paper describes process evaluation group leadership program for adolescents dystrophy. A five-day online was conducted 14 participants, 12 males, and 2 females, between 13 18 years, beneficiaries Mobility in Dystrophy (MIND) trust, Kerala, India. The sessions, which lasted around one half hours each, focused on self-discovery participatory strength-based...
Purpose Duchenne muscular dystrophy (DMD), a genetically linked muscle disease, is one of the most devastating diseases with currently no cure. Developing essential social skills as child moves into adolescence particularly problematic in DMD. The present study an exploration challenges faced by children
Abstract Background and Objectives: Cardiovascular magnetic resonance imaging (CMRI) is the noninvasive technique of choice for early detection cardiac involvement in Duchenne Becker muscular dystrophy (DMD BMD, respectively), but seldom used routine clinical practice Indian context. We sought to determine prevalence CMRI abnormalities patients with DMD BMD compare parameters phenotypic genotypic characteristics. Methods: A prospective, observational study was conducted on genetically...
Background: The caregivers of persons with motor neuron disease (MND) have several needs that are usually not voiced on any platform. Aim: To explore the lived experience spouses MND, identify their and develop guidelines for better home-based care. Method: An exploratory study 3-point in-depth interviews among 13 participants was conducted. Participants were MND under treatment at a national quaternary referral center. interpretative phenomenological analysis identified participants' needs....
Duchenne muscular dystrophy (DMD) is an X-linked disorder caused due to large deletions, duplications,and small pathogenic variants. This article compares the carrier frequency of different variants in DMD gene for first time Indian cohort.Ninety-one mothers genetically confirmed probands are included this study. Pathogenic were detected by multiplex ligation-dependent probe amplification (MLPA) or next-generation sequencing (NGS). Maternal blood samples evaluated either MLPA Sanger...
Social workers routinely work with chronically ill, providing support for long term care. Several qualitative studies describe the experiences of person and carer in a chronic illness. There is limited synthesis these to aid practice. The current review aims present spouses ill persons reported literature. A comprehensive search electronic databases was done, were selected using PRISMA guidelines. subjected quality check CASP guidelines score assigned each those studies. Later, results done...
In many international care guidelines, multidisciplinary palliative forms a key to optimum management in Motor Neuron Disease (MND). We describe the home-based interventions for client with MND and his family from Low Middle-income country context. This report also discusses advantages challenges of same suggestions sustaining quality neuro conditions.