Miriam Galvin | Trinity College Dublin (original) (raw)

Papers by Miriam Galvin

Frontiers in dementia, Mar 20, 2024

Background: The social and economic challenges of the COVID-pandemic greatly impacted people's ph... more Background: The social and economic challenges of the COVID-pandemic greatly impacted people's physical and mental health. The majority of care for individuals with brain health challenges, including dementia and mental illness, is provided by informal family caregivers. The "Coping with Loneliness, Isolation and COVID-" (CLIC) Global Caregiver Survey received responses from over , caregivers across countries of people living with enduring brain and/or physical health conditions. Aim: This study examined English-speaking caregivers of people with brain health challenges (dementia and mental health conditions) descriptions of changes and interruptions in their ability to provide care in the context of the COVID-pandemic. Materials and methods: Quantitative and qualitative data were collected as part of the large-scale CLIC Global Caregiver Survey. Data from over English language respondents were analyzed using descriptive statistics and thematic content analysis. A multidisciplinary team of clinicians and health policy practitioners participated in team-based qualitative analyses. Results: The majority of respondents were from the United States (% USA), female (%) and care providers to people living with dementia (%). Respondents reported concerns about their loved one's physical and mental health, the limited access to other caregiving sources and the limited opportunities to maintain personal wellbeing. Practical, social, psychological and emotional impacts a ected their ability to o er care. There was clear evidence that the disruption to health and social care services-institutions, day care and home services impacted the ability to o er care. Discussion: The pandemic may be seen as a catastrophic "event" that negatively impacted lives and livelihoods. A number of the social determinants of health were negatively impacted for the caregivers surveyed during this prolonged period. Caring for caregivers and supportive health and social care interventions are required to maintain the wellbeing of this informal workforce. This study Frontiers in Dementia frontiersin.org Kennedy et al.. /frdem.. represents the largest, crosscountry survey on the impact of the COVIDpandemic on caregivers of people with brain health challenges to date; serving as an important resource for support agencies and to inform policy.

Background Hearing and vision loss is highly prevalent in residents with dementia (RwD) living in... more Background Hearing and vision loss is highly prevalent in residents with dementia (RwD) living in long-term care (LTC) facilities. Sensory loss often has a negative impact on quality of life and other dementia-related outcomes. Optimising sensory function may improve dementia-related outcomes in LTC facilities. The SENSE-Cog Residential Care pilot trial will evaluate whether a multi-faceted hearing and vision intervention for RwD and concurrent sensory loss is suitable for definitive testing in a large-scale cluster randomised control trial (RCT) in Ireland, and how this can best be achieved. Methods This is a six-month feasibility-pilot observer-blind, multicentre, cluster RCT. Between eight and 15 LTC facilities (with an average of 5 RwD recruited per home) will be randomly assigned to receive either "care as usual" (CAU) or a multi-component sensory intervention comprising: (1) personalised resident hearing and vision support; (2) staff training in sensory health; (3) f...

Journal of Personalized Medicine, Mar 10, 2022

This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY

BMJ Open, Sep 1, 2019

et al. Group interventions for amyotrophic lateral sclerosis caregivers in Ireland: a randomised ... more et al. Group interventions for amyotrophic lateral sclerosis caregivers in Ireland: a randomised controlled trial protocol. BMJ Open 2019;9:e030684.

Journal of Nursing Management, Dec 1, 2020

Those who identify as lesbian, gay, bisexual and transgender/transsexual (LGBT+) are described as... more Those who identify as lesbian, gay, bisexual and transgender/transsexual (LGBT+) are described as having an invisible identity, and LGBT+ older adults as being 'doubly invisible' (Higgins et al., 2011), particularly within health research (Institute of Medicine, 2011). This commentary uses examples from the Irish health system to illustrate how older LGBT+ people may encounter barriers in accessing care, due to the design of the health care system and the model of service delivery. Issues addressed are viewed using a conceptual framework

BMJ Open, Jan 20, 2023

et al. Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosi... more et al. Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixedmethods study. BMJ Open 2023;13:e064254.

Journal of Nursing Management

Those who identify as lesbian, gay, bisexual and transgender/transsexual (LGBT+) are described as... more Those who identify as lesbian, gay, bisexual and transgender/transsexual (LGBT+) are described as having an invisible identity, and LGBT+ older adults as being 'doubly invisible' (Higgins et al., 2011), particularly within health research (Institute of Medicine, 2011). This commentary uses examples from the Irish health system to illustrate how older LGBT+ people may encounter barriers in accessing care, due to the design of the health care system and the model of service delivery. Issues addressed are viewed using a conceptual framework

International Journal of Geriatric Psychiatry

Background: Public health restrictions due to the COVID-19 (SARS CoV-2) pandemic have disproporti... more 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-speaking regions worldwide, by investigating outcomes before and during the COVID-19 pandemic. Methods: A cross-sectional anonymous online survey data from 2287 Englishspeaking caregivers of people with long term health conditions from four Englishspeaking regions (UK, Ireland, USA, New Zealand) included measures of care burden, loneliness, and social isolation, reported before and during the COVID-19 pandemic. Analyses were descriptive, followed by an ordinal regression model for predictors of burden. Results: Compared to pre-pandemic levels, all caregivers experienced a significant increase in burden, loneliness, and isolation. Caregivers of people with both brain health and physical conditions were the most burdened and had the highest levels of loneliness and isolation compared to caregivers of people with either a brain health or physical condition only. The increase in care burden among caregivers of people with brain health challenges was associated with caregiver's gender, moderate and severe emotional loneliness, magnitude and frequency of isolation during the pandemic, and care circumstances (cohabitation with the care recipient, restrictions on the ability to provide care). Conclusions: Health and social care interventions should target caregivers' care circumstances and psychological outcomes, particularly in women, accounting for On the behalf of the CLIC Caregiver study group(See Appendix A). Emilia Grycuk and Yaohua Chen joint first authors. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

on the Margins 3 support. We would also like to acknowledge the Family Support Agency, now respon... more on the Margins 3 support. We would also like to acknowledge the Family Support Agency, now responsible for the Families Research Programme, who have kindly assisted with the publication costs. Special thanks are due to Clare Farrell whose editorial skills helped bring the report to increasing levels of comprehension and to Joan O'Flynn for her editorial assistance with the final edit. All those involved in this research project would like to recognize the assistance provided by the men who agreed to be interviewed for the study. They were willing to give their time and relate, sometimes painful, experiences to help us. We hope this document is an honest portrayal of their lives and words. Contact with these men would not have been possible without the kind facilitation shown to the researchers by the staff and management of the centre attended by the men and for that we are extremely grateful.

Neurology, 2015

OBJECTIVE: To investigate factors contributing to caregiver burden in Amyotrophic Lateral Scleros... more OBJECTIVE: To investigate factors contributing to caregiver burden in Amyotrophic Lateral Sclerosis (ALS). BACKGROUND: ALS is a neurodegenerative disorder of an unknown etiology, limited treatment, with a rapidly progressive and fatal trajectory. In other neurodegenerative conditions, caregiver burden has been reported to be a consequence of physical impairment worsening alongside disease trajectory, although recent reports also implicate cognitive, behavioural and neuropsychiatric symptoms as significant factors contributing to caregiver burden. METHODS: Thirty-three patients with ALS underwent detailed neuropsychological assessment to investigate their cognitive status and behavioural profile. The patients’ primary caregivers (n=33) completed a number of measures investigating behavioural change since the onset of ALS, and the psychological impact of ALS. RESULTS: Caregivers were divided into high and low burden groups as per cutoff norms. High burden was associated with significa...

Brain Sciences, 2021

Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegen... more 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 complexity of burden and self-defined difficulties as described by the caregivers themselves. Quantitative and qualitative data were collected during face-to-face interviews with informal caregivers from centres in the Netherlands, England, and Ireland. Standardised measures assessed burden, quality of life, and psychological distress; furthermore, an open-ended question was asked about difficult aspects of caregiving. Most caregivers were female, spouse/partners, and lived with the person with ALS for whom they provided care. Significant differences between national cohorts were identified for burden, quality of life, and anxiety. Among ...

Proceedings of the 11th ACM International Conference on Bioinformatics, Computational Biology and Health Informatics, 2020

The aim of this study is to create a Clinical Decision Support System (CDSS) to assist in the ear... more The aim of this study is to create a Clinical Decision Support System (CDSS) to assist in the early identification and support of caregivers at risk of experiencing burden while caring for a person with Amyotrophic Lateral Sclerosis. We work towards a system that uses a minimum amount of data that could be routinely collected. We investigated if the impairment of patients alone provides sufficient information for the prediction of caregiver burden. Results reveal a better performance of our system in identifying those at risk of high burden, but more information is needed for an accurate CDSS.

Health and Quality of Life Outcomes, 2020

Background Quality of life is a basic goal of health and social care. The majority of people with... more 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 currently no curative treatment. Aim To explore individual quality of life of people with ALS and their informal caregivers over time. Methods Over three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases. Results Individual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners a...

HRB Open Research, 2020

This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and pol... more 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, anthropology, psychology, gerontology) and professions (researcher, clinicians, writers, practicing artists). The group developed a workshop to explore the theme of ‘Diversity and Brain Health’ through the lens of lesbian, gay, bisexual, transgender/transsexual plus (LGBT+). . Guided by two advisors (Prof Agnes Higgins, TCD; Mr Ciaran McKinney, Age and Opportunity), we invited older LGBT+ people and those interested in the topic of LGBT+ and ageing, healthcare providers, policy makers and interested members of the research community. We partnered with colleagues in the School of Law to include socio-legal perspectives. Following the work...

HRB Open Research, 2020

This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and pol... more 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, anthropology, psychology, gerontology) and professions (researcher, clinicians, writers, practicing artists). The group developed a workshop to explore the theme of ‘Diversity and Brain Health’ through the lens of non-normative gender identities and sexualities. Guided by two advisors (Prof Agnes Higgins, TCD; Mr Ciaran McKinney, Age and Opportunity), we invited older LGBT+ people and those interested in the topic of LGBT+ and ageing, healthcare providers, policy makers and interested members of the research community. We partnered with colleagues in the School of Law to include socio-legal perspectives. Following the workshop, Roe and Wa...

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2019

BMJ Open, 2018

ObjectivesAmyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a deb... more ObjectivesAmyotrophic 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 explore the needs of informal ALS caregivers across the caregiving course.DesignIn an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data.Setting and participantsHome interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clini...

BMJ Open, 2017

et al. From first symptoms to diagnosis of amyotrophic lateral sclerosis: perspectives of an Iris... more et al. From first symptoms to diagnosis of amyotrophic lateral sclerosis: perspectives of an Irish informal caregiver cohort-a thematic analysis.

PloS one, 2017

Amyotrophic Lateral Sclerosis (ALS) is a devastating neurological condition that requires coordin... more 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. Using chart review and national register data, we have detailed the journey of a national cohort of ALS patients (n = 155) from the time of first symptom to presentation at a multidisciplinary clinic (MDC). Key milestones were analysed, including frequency of consultations, clinical interventions, and associated economic cost. A majority of patients was male (60%), 65 years of age and over (54%), and had spinal onset ALS (72%). Time from onset of first symptoms to ALS diagnosis was a mean of 15.1 months (median, 11). There was a mean interval of 17.4 months (median 12.5) from first symptoms to arrival at the MDC, and a mean of 4.09 (median, 4) consultations with health care professionals. Electromyo...

Frontiers in dementia, Mar 20, 2024

Background: The social and economic challenges of the COVID-pandemic greatly impacted people's ph... more Background: The social and economic challenges of the COVID-pandemic greatly impacted people's physical and mental health. The majority of care for individuals with brain health challenges, including dementia and mental illness, is provided by informal family caregivers. The "Coping with Loneliness, Isolation and COVID-" (CLIC) Global Caregiver Survey received responses from over , caregivers across countries of people living with enduring brain and/or physical health conditions. Aim: This study examined English-speaking caregivers of people with brain health challenges (dementia and mental health conditions) descriptions of changes and interruptions in their ability to provide care in the context of the COVID-pandemic. Materials and methods: Quantitative and qualitative data were collected as part of the large-scale CLIC Global Caregiver Survey. Data from over English language respondents were analyzed using descriptive statistics and thematic content analysis. A multidisciplinary team of clinicians and health policy practitioners participated in team-based qualitative analyses. Results: The majority of respondents were from the United States (% USA), female (%) and care providers to people living with dementia (%). Respondents reported concerns about their loved one's physical and mental health, the limited access to other caregiving sources and the limited opportunities to maintain personal wellbeing. Practical, social, psychological and emotional impacts a ected their ability to o er care. There was clear evidence that the disruption to health and social care services-institutions, day care and home services impacted the ability to o er care. Discussion: The pandemic may be seen as a catastrophic "event" that negatively impacted lives and livelihoods. A number of the social determinants of health were negatively impacted for the caregivers surveyed during this prolonged period. Caring for caregivers and supportive health and social care interventions are required to maintain the wellbeing of this informal workforce. This study Frontiers in Dementia frontiersin.org Kennedy et al.. /frdem.. represents the largest, crosscountry survey on the impact of the COVIDpandemic on caregivers of people with brain health challenges to date; serving as an important resource for support agencies and to inform policy.

Background Hearing and vision loss is highly prevalent in residents with dementia (RwD) living in... more Background Hearing and vision loss is highly prevalent in residents with dementia (RwD) living in long-term care (LTC) facilities. Sensory loss often has a negative impact on quality of life and other dementia-related outcomes. Optimising sensory function may improve dementia-related outcomes in LTC facilities. The SENSE-Cog Residential Care pilot trial will evaluate whether a multi-faceted hearing and vision intervention for RwD and concurrent sensory loss is suitable for definitive testing in a large-scale cluster randomised control trial (RCT) in Ireland, and how this can best be achieved. Methods This is a six-month feasibility-pilot observer-blind, multicentre, cluster RCT. Between eight and 15 LTC facilities (with an average of 5 RwD recruited per home) will be randomly assigned to receive either "care as usual" (CAU) or a multi-component sensory intervention comprising: (1) personalised resident hearing and vision support; (2) staff training in sensory health; (3) f...

Journal of Personalized Medicine, Mar 10, 2022

This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY

BMJ Open, Sep 1, 2019

et al. Group interventions for amyotrophic lateral sclerosis caregivers in Ireland: a randomised ... more et al. Group interventions for amyotrophic lateral sclerosis caregivers in Ireland: a randomised controlled trial protocol. BMJ Open 2019;9:e030684.

Journal of Nursing Management, Dec 1, 2020

Those who identify as lesbian, gay, bisexual and transgender/transsexual (LGBT+) are described as... more Those who identify as lesbian, gay, bisexual and transgender/transsexual (LGBT+) are described as having an invisible identity, and LGBT+ older adults as being 'doubly invisible' (Higgins et al., 2011), particularly within health research (Institute of Medicine, 2011). This commentary uses examples from the Irish health system to illustrate how older LGBT+ people may encounter barriers in accessing care, due to the design of the health care system and the model of service delivery. Issues addressed are viewed using a conceptual framework

BMJ Open, Jan 20, 2023

et al. Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosi... more et al. Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixedmethods study. BMJ Open 2023;13:e064254.

Journal of Nursing Management

Those who identify as lesbian, gay, bisexual and transgender/transsexual (LGBT+) are described as... more Those who identify as lesbian, gay, bisexual and transgender/transsexual (LGBT+) are described as having an invisible identity, and LGBT+ older adults as being 'doubly invisible' (Higgins et al., 2011), particularly within health research (Institute of Medicine, 2011). This commentary uses examples from the Irish health system to illustrate how older LGBT+ people may encounter barriers in accessing care, due to the design of the health care system and the model of service delivery. Issues addressed are viewed using a conceptual framework

International Journal of Geriatric Psychiatry

Background: Public health restrictions due to the COVID-19 (SARS CoV-2) pandemic have disproporti... more 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-speaking regions worldwide, by investigating outcomes before and during the COVID-19 pandemic. Methods: A cross-sectional anonymous online survey data from 2287 Englishspeaking caregivers of people with long term health conditions from four Englishspeaking regions (UK, Ireland, USA, New Zealand) included measures of care burden, loneliness, and social isolation, reported before and during the COVID-19 pandemic. Analyses were descriptive, followed by an ordinal regression model for predictors of burden. Results: Compared to pre-pandemic levels, all caregivers experienced a significant increase in burden, loneliness, and isolation. Caregivers of people with both brain health and physical conditions were the most burdened and had the highest levels of loneliness and isolation compared to caregivers of people with either a brain health or physical condition only. The increase in care burden among caregivers of people with brain health challenges was associated with caregiver's gender, moderate and severe emotional loneliness, magnitude and frequency of isolation during the pandemic, and care circumstances (cohabitation with the care recipient, restrictions on the ability to provide care). Conclusions: Health and social care interventions should target caregivers' care circumstances and psychological outcomes, particularly in women, accounting for On the behalf of the CLIC Caregiver study group(See Appendix A). Emilia Grycuk and Yaohua Chen joint first authors. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

on the Margins 3 support. We would also like to acknowledge the Family Support Agency, now respon... more on the Margins 3 support. We would also like to acknowledge the Family Support Agency, now responsible for the Families Research Programme, who have kindly assisted with the publication costs. Special thanks are due to Clare Farrell whose editorial skills helped bring the report to increasing levels of comprehension and to Joan O'Flynn for her editorial assistance with the final edit. All those involved in this research project would like to recognize the assistance provided by the men who agreed to be interviewed for the study. They were willing to give their time and relate, sometimes painful, experiences to help us. We hope this document is an honest portrayal of their lives and words. Contact with these men would not have been possible without the kind facilitation shown to the researchers by the staff and management of the centre attended by the men and for that we are extremely grateful.

Neurology, 2015

OBJECTIVE: To investigate factors contributing to caregiver burden in Amyotrophic Lateral Scleros... more OBJECTIVE: To investigate factors contributing to caregiver burden in Amyotrophic Lateral Sclerosis (ALS). BACKGROUND: ALS is a neurodegenerative disorder of an unknown etiology, limited treatment, with a rapidly progressive and fatal trajectory. In other neurodegenerative conditions, caregiver burden has been reported to be a consequence of physical impairment worsening alongside disease trajectory, although recent reports also implicate cognitive, behavioural and neuropsychiatric symptoms as significant factors contributing to caregiver burden. METHODS: Thirty-three patients with ALS underwent detailed neuropsychological assessment to investigate their cognitive status and behavioural profile. The patients’ primary caregivers (n=33) completed a number of measures investigating behavioural change since the onset of ALS, and the psychological impact of ALS. RESULTS: Caregivers were divided into high and low burden groups as per cutoff norms. High burden was associated with significa...

Brain Sciences, 2021

Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegen... more 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 complexity of burden and self-defined difficulties as described by the caregivers themselves. Quantitative and qualitative data were collected during face-to-face interviews with informal caregivers from centres in the Netherlands, England, and Ireland. Standardised measures assessed burden, quality of life, and psychological distress; furthermore, an open-ended question was asked about difficult aspects of caregiving. Most caregivers were female, spouse/partners, and lived with the person with ALS for whom they provided care. Significant differences between national cohorts were identified for burden, quality of life, and anxiety. Among ...

Proceedings of the 11th ACM International Conference on Bioinformatics, Computational Biology and Health Informatics, 2020

The aim of this study is to create a Clinical Decision Support System (CDSS) to assist in the ear... more The aim of this study is to create a Clinical Decision Support System (CDSS) to assist in the early identification and support of caregivers at risk of experiencing burden while caring for a person with Amyotrophic Lateral Sclerosis. We work towards a system that uses a minimum amount of data that could be routinely collected. We investigated if the impairment of patients alone provides sufficient information for the prediction of caregiver burden. Results reveal a better performance of our system in identifying those at risk of high burden, but more information is needed for an accurate CDSS.

Health and Quality of Life Outcomes, 2020

Background Quality of life is a basic goal of health and social care. The majority of people with... more 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 currently no curative treatment. Aim To explore individual quality of life of people with ALS and their informal caregivers over time. Methods Over three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases. Results Individual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners a...

HRB Open Research, 2020

This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and pol... more 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, anthropology, psychology, gerontology) and professions (researcher, clinicians, writers, practicing artists). The group developed a workshop to explore the theme of ‘Diversity and Brain Health’ through the lens of lesbian, gay, bisexual, transgender/transsexual plus (LGBT+). . Guided by two advisors (Prof Agnes Higgins, TCD; Mr Ciaran McKinney, Age and Opportunity), we invited older LGBT+ people and those interested in the topic of LGBT+ and ageing, healthcare providers, policy makers and interested members of the research community. We partnered with colleagues in the School of Law to include socio-legal perspectives. Following the work...

HRB Open Research, 2020

This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and pol... more 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, anthropology, psychology, gerontology) and professions (researcher, clinicians, writers, practicing artists). The group developed a workshop to explore the theme of ‘Diversity and Brain Health’ through the lens of non-normative gender identities and sexualities. Guided by two advisors (Prof Agnes Higgins, TCD; Mr Ciaran McKinney, Age and Opportunity), we invited older LGBT+ people and those interested in the topic of LGBT+ and ageing, healthcare providers, policy makers and interested members of the research community. We partnered with colleagues in the School of Law to include socio-legal perspectives. Following the workshop, Roe and Wa...

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2019

BMJ Open, 2018

ObjectivesAmyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a deb... more ObjectivesAmyotrophic 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 explore the needs of informal ALS caregivers across the caregiving course.DesignIn an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data.Setting and participantsHome interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clini...

BMJ Open, 2017

et al. From first symptoms to diagnosis of amyotrophic lateral sclerosis: perspectives of an Iris... more et al. From first symptoms to diagnosis of amyotrophic lateral sclerosis: perspectives of an Irish informal caregiver cohort-a thematic analysis.

PloS one, 2017

Amyotrophic Lateral Sclerosis (ALS) is a devastating neurological condition that requires coordin... more 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. Using chart review and national register data, we have detailed the journey of a national cohort of ALS patients (n = 155) from the time of first symptom to presentation at a multidisciplinary clinic (MDC). Key milestones were analysed, including frequency of consultations, clinical interventions, and associated economic cost. A majority of patients was male (60%), 65 years of age and over (54%), and had spinal onset ALS (72%). Time from onset of first symptoms to ALS diagnosis was a mean of 15.1 months (median, 11). There was a mean interval of 17.4 months (median 12.5) from first symptoms to arrival at the MDC, and a mean of 4.09 (median, 4) consultations with health care professionals. Electromyo...