Miriam GalvinTrinity College Dublin | TCD · School of Medicine
Miriam Galvin
Doctor of Philosophy
About
61
Publications
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712
Citations
Citations since 2017
Publications
Publications (61)
Objectives
To explore factors associated with care burden and the self-described positive aspects of caring for a person living with amyotrophic lateral sclerosis (ALS) over time.
Design
Exploratory longitudinal mixed-methods study.
Setting
A national multidisciplinary tertiary clinic in Dublin, Ireland.
Participants
Participants were informal c...
Informal caregivers may experience high levels burden. Prior to COVID‐19, loneliness and social isolation, and especially the discordance between them, were recognized for rapid aging‐related cognitive decline. The COVID‐19 has significantly increased social isolation and loneliness in caregivers. Thus, we aimed to explore the variables that were a...
Public health restrictions due to the COVID‐19 pandemic have affected care partners of people living with dementia and/or mental health conditions. This qualitative study explores care partners’ ability to offer care, and changes and interruptions to care provision during the period of the COVID‐19 pandemic (2020) in English‐speaking regions worldw...
Background:
Public health restrictions due to the COVID-19 (SARS CoV-2) pandemic have disproportionately affected informal caregivers of people living with long term health conditions. We aimed to explore levels of care burden, loneliness, and social isolation among caregivers of people with enduring physical and brain health conditions in English...
Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neuron Disease (MND), is a rare and fatal neurodegenerative disease. As ALS is currently incurable, the aim of the treatment is mainly to alleviate symptoms and improve quality of life (QoL). We designed a prototype Clinical Decision Support System (CDSS) to alert clinicians when a person wit...
Objectives:
Amyotrophic Lateral Sclerosis (ALS) is a systemic and terminal disorder of the central nervous system which causes paralysis of limbs, respiratory and bulbar muscles, impacting on physical, communication, cognitive and behavioural functioning. Informal caregivers play a key role in the care of people with ALS. This study aimed to explo...
Background:
Prior to COVID-19, >90% of caregivers of people with brain health challenges (dementia, mental ill health, intellectual disability) experienced high levels of distress, burden, loneliness and social isolation. The COVID-19 pandemic has significantly increased these impacts, particularly since these caregivers are often older and physic...
Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegenerative condition for which there is currently no cure. Informal caregivers play a vital role in supporting the person with ALS, and it is essential to support their wellbeing. This multi-centre, mixed methods descriptive exploratory study describes the...
Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative, fatal and currently incurable disease. People with ALS need support from informal caregivers due to the motor and cognitive decline caused by the disease. This study aims to identify caregivers whose quality of life (QoL) may be impacted as a result of caring for a person with ALS. In...
Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative disease that causes a rapid decline in motor functions and has a fatal trajectory. ALS is currently incurable, so the aim of the treatment is mostly to alleviate symptoms and improve quality of life (QoL) for the patients. The goal of this study is to develop a Clinical Decision Suppor...
Background
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative condition with a mean life expectancy of 3 years from first symptom. Understanding the factors that are important to both patients and their caregivers has the potential to enhance service delivery and engagement, and improve efficiency. The Discrete Choice Experiment...
The Irish Republic (population 4.9 million) has 150 new cases of ALS each year and 380 individuals living with the condition. There is one specialist public multidisciplinary service for ALS in the country, linking closely with the voluntary organization (IMNDA) and providing care for all Irish citizens. Patients are reviewed at six-week intervals...
Background
Quality of life is a basic goal of health and social care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. It is important to recognize the factors that contribute to quality of life for individuals to better understand the lived experiences in a condition for which there is cur...
Aim
This commentary examines how health system design and delivery can fail to support the needs of LGBT+ older adults.
Background
LGBT+ older adults face barriers in access to care, impacting their ability to receive person centred care in old age, which is central to the prevention and management of frailty, disability and disease.
Evaluation
U...
This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and policy for older LGBT+ people. It is written by a multidisciplinary group of Atlantic Fellows for Equity in Brain Health at the Global Brain Health Institute in Trinity College Dublin (TCD), from a variety of disciplines (health economics, human geography,...
Objective: Amyotrophic lateral sclerosis (ALS) has profound effects on people with ALS (PALS) and caregivers. There is a paucity of research detailing and comparing PALS and caregiver day-to-day perspectives of ALS. Methods: A survey developed collaboratively by The ALS Association and a panel of experts in ALS care was designed to broadly sample t...
This chapter discusses some of the challenges of cross-national educational research. Several interrelated terms, including ‘cross-national research’, ‘international cross-cultural research’, ‘cross-national comparative research’ and ‘international research’ are used to describe these types of studies and the challenges they face. Although there ma...
This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and policy for older LGBT+ people. It is written by a multidisciplinary group of Atlantic Fellows for Equity in Brain Health at the Global Brain Health Institute in Trinity College Dublin (TCD), from a variety of disciplines (health economics, human geography,...
Objectives
Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease that is characterised by the rapid degeneration of upper and lower motor neurons and has a fatal trajectory 3–4 years from symptom onset. Due to the nature of the condition patients with ALS require the assistance of informal caregivers whose task is demanding and ca...
Background: ALS is a multidimensional condition, with many patients presenting with cognitive and/or behavioural impairment. Caregivers of patients with ALS, commonly non-paid immediate family members, often take primary responsibility for the complex care needs of patients in non-medicalised setting, and many as a consequence experience caregiver...
Background: Few studies in Amyotrophic Lateral Sclerosis (ALS) have profiled caregivers’ burden, subjective distress, quality of life, and investigated this triad post-bereavement. Sixty two ALS patients and their primary caregivers were enrolled with caregivers interviewed post bereavement for the current study. Caregivers completed measures of an...
Abstract
Introduction: Amyotrophic lateral sclerosis (ALS) is a rapid and fatal motor disease marked by progressive physical impairment due to muscle weakness and wasting. It is multidimensional with many patients presenting with cognitive and/or behavioural impairment. Caregivers of patients with ALS, commonly non-paid immediate family
members, of...
Objective:
This study aims (1) to assess physicians' attitudes toward different palliative end-of-life (EOL) practices in amyotrophic lateral sclerosis (ALS) care, including forgoing artificial nutrition and hydration (FANH), continuous sedation until death (CSD), and withdrawing invasive ventilation (WIV), and toward physician-assisted dying (PAD...
The IMPACT ALS survey aims to gather quantitative and qualitative information regarding the
perspective of people with ALS and their caregivers as it relates to burden of disease, functional outcomes, views on treatment, and clinical trial participation.
Objective: Caregiver burden is a recognised consequence of caring for a patient with neurodegeneration. Amyotrophic Lateral Sclerosis (ALS) differs from other neurodegenerations by its rapid progression and impairment of motor, cognitive, and behavioural function, which contribute to caregiver burden. However, longitudinal factors that determine th...
Patients with Amyotrophic Lateral Sclerosis (ALS), experience cognitive and behavioural impairment that share features with Huntington ’s disease (HD), Multiple Sclerosis (MS), Frontotemporal Dementia (FTD), Traumatic Brain Injury (TBI), Stroke, and Parkinson ’s disease (PD). Lessons can be learned across these conditions about recognition, evaluat...
Objectives
Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to ex...
Background
Amyotrophic Lateral Sclerosis (ALS) is a devastating neurological condition that requires coordinated, multidisciplinary clinical management. ALS is prone to misdiagnosis as its signs and symptoms may be non-specific, which may prolong patients’ journey to multidisciplinary ALS care.
Methods
Using chart review and national register data...
Few studies in amyotrophic lateral sclerosis(ALS) have profiled disease-specific features of the condition in conjunction with assessment of caregivers' burden, distress, quality of life, and investigated patient survival. Eighty-four ALS patients and their primary caregivers were enrolled. Patients completed ALS-specific measures of physical and cogn...
Objectives
Informal caregivers play an integral part in the management of amyotrophic lateral sclerosis (ALS). The objective of this study was to explore the journey from first problem symptoms to diagnosis from the perspective of informal caregivers providing care to people with ALS.
Design
As part of a semistructured interview, information was c...
Objective: Caregiver burden is a recognized consequence of caring for someone suffering from a neurodegenerative condition. Amyotrophic Lateral Sclerosis (ALS) is rapidly progressive and can impair cognitive function, movement, and behaviour. This rapid disease trajectory separates it from other neurodegenerative conditions. The role of psychologic...
The journey of a national cohort of ALS patients from the time of first symptom to presentation at the ALS multidisciplinary clinic, using data from a detailed chart review and national register. Key milestones in the patients’ journey to the ALS clinic were analysed, including pattern and frequency of consultations, clinical interventions, and ass...
Background
Caregiver burden affects the physical, psychological and emotional well-being of the caregiver. The purpose of this analysis was to describe an informal caregiver cohort (n = 81), their subjective assessment of burden and difficulties experienced as a result of providing care to people with Amyotrophic Lateral Sclerosis (ALS). Methods
Us...
Introduction
Caregiver burden in ALS research has been reported as a consequence of physical impairment, cognitive decline, and neurobehavioural changes. The aim of this study was to use longitudinal data to investigate whether distress precedes or follows caregiver burden.
Method
Patients with ALS were recruited as part of an investigation of t...
Variations in environmental risk factors potentially influence incidence and progression in complex multifactorial diseases. Few studies have examined the association of survival in amyotrophic lateral sclerosis (ALS) with environmental geospatial variables. Here we use data from the Irish ALS cohort to perform such an analysis. Geographic data sou...
Background:
The multidisciplinary approach in the management of Amyotrophic Lateral Sclerosis (ALS) has been shown to provide superior care to devolved care, with better survival, improved quality of care, and quality of life. Access to expert multidisciplinary management should be a standard for patients with ALS. This analysis explores the patie...
The objective of the study was to investigate whether cognitive and behavioural impairment in Amyotrophic Lateral Sclerosis (ALS) contributes to caregiver burden, and whether carer burden affects patient outcome. Thirty-three dyads of incident patients with ALS and their primary caregivers (n = 33) completed a series of measures to determine cognit...
Most health-care professionals are trained to promote and maintain life and often have difficulty when faced with the often rapid decline and death of people with terminal illnesses such as amyotrophic lateral sclerosis (ALS). By contrast, data suggest that early and open discussion of end-of-life issues with patients and families allows time for r...
Amyotrophic Lateral Sclerosis (ALS) is a progressive, neurodegenerative disease accounting for approximately 10,000 deaths annually in Europe. It is a complex condition, impacting on the physical, communication and cognitive functioning of those affected, with death usually occurring within three years of onset of symptoms. Ideally, the care of tho...
This study examines the ways in which men who relate sexually to children, identified in the press as paedophiles, are represented in four leading newspapers in the Republic of Ireland in the period from 2003-2005. Utilising a qualitative research methodology namely critical discourse analysis, a social constructionist approach and informed by post...
Projects
Project (1)
The application of Machine Learning (ML) in medicine to inform clinical research and develop Clinical Decision Support Systems (CDSS), while focusing on matters of explainability, ethics, data protection and the usability of such models and systems for their incorporation in the clinical workflow. The practical part of this project describes the use of ML to predict the well-being of people with Amyotrophic Lateral Sclerosis (ALS) and their informal caregivers, in terms of experienced quality of life and burden. This work aims to uncover the factors that relate to their well-being, and develop a CDSS that informs clinicians so as to personalise the support the affected individuals receive. Part of this work was also a user study to test the CDSS in terms of explainability in the eyes of healthcare professionals.
