Neuropalliative Care Needs Checklist for Motor Neuron Disease and Parkinson's Disease: A Biopsychosocial Approach.

Objectives: Neurodegenerative disorders necessitate comprehensive palliative care due to their progressive and irreversible nature. Limited studies have explored the comprehensive assessment needs of this population. This present study is designed to develop a checklist for evaluating the palliative care needs of individuals with motor neuron disease (MND) and Parkinson's disease (PD).

Sociocultural aspects of the medicalisation of infertility: a comparative reading of two illness narratives.

This paper is a comparative reading of variations in the medicalisation of infertility caused by sociocultural aspects, in two illness narratives by patients: Elizabeth Katkin's (2018), a story of navigating a fertility industry with polycystic ovarian syndrome and antiphospholipid syndrome in America and Rohini Rajagopal's (2021), a discussion from India of a growing awareness of medicalisation in treatment of unexplained infertility. For this purpose, it first charts scholarship on illness narratives and medicalisation, noting a historical association. Following this, it shows how infertility, a physiological symptom of reproductive incapacity or failure to show clinical pregnancy, is generally medicalised.

An individualised psychosocial intervention program for persons with MND/ALS and their families in low resource settings.

Objective: To develop individualised psychosocial intervention program for people with MND and their families in India.

Methods: People with MND and healthcare staff were constructively involved in co-designing the intervention program in four phases adapted from the MRC framework: 1. A detailed need assessment phase where 30 participants shared their perceptions of psychosocial needs 2.

Development of Guidelines for Spouses Engaged in Home-Based Care of Persons With Motor Neuron Disease From Indian Context.

The caregivers of persons with motor neuron disease (MND) have several needs that are usually not voiced on any platform. To explore the lived experience of spouses of persons with MND, identify their needs and develop guidelines for better home-based care. An exploratory study with 3-point in-depth interviews among 13 participants was conducted.

Integrated Home-Based Palliative Care in Motor Neuron Disease: A Case Report from Low- Middle Income Country.

In many international care guidelines, multidisciplinary palliative care forms a key to optimum management in Motor Neuron Disease (MND). We describe the home-based palliative care interventions for a client with MND and his family from a Low and Middle-income country context. This report also discusses the advantages and challenges of the same with suggestions for sustaining the quality of care for neuro palliative conditions.

Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding.

Introduction: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children.

Objective: To explore the parent's understanding of palliative care services available for children with DMD and the challenges faced by them in utilizing the same.

Lived Experience of Spouses of Persons with Motor Neuron Disease: Preliminary Findings through Interpretative Phenomenological Analysis.

Introduction: Motor neuron disease (MND) is a progressive neuromuscular disorder that can have significant and debilitating impact on the affected patient and families. Spouses are the primary carers for persons with MND in India, and the life of the person with MND and their spouse is never the same after the diagnosis.

Aim: The objective was to explore the lived experience of spouses of persons diagnosed with MND.

Family Caregivers' Experiences with Dying and Bereavement of Individuals with Motor Neuron Disease in India.

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 of the neurodegenerative conditions are cared for at home.

Caregiver burden and quality of life of patients with amyotrophic lateral sclerosis in India.

Aim: Amyotrophic lateral sclerosis (ALS) or motor neuron disease (MND) is a progressive degenerative disorder that can have significant debilitating impact. Few studies have explored living with ALS in the developing countries. The study aims to understand the relationship between functionality, quality of life, and caregiver burden in ALS in the sociocultural scenario in India.