A Longitudinal Study of the Complex Needs of Motor Neuron Disease Caregivers
Citation:
Carney, Síle, A Longitudinal Study of the Complex Needs of Motor Neuron Disease Caregivers, Trinity College Dublin, School of Medicine, Clinical Medicine, 2023Download Item:
Abstract:
Motor Neuron Disease (MND) is the term used to describe a number of terminal incurable neurodegenerative disorders, of which Amyotrophic Lateral Sclerosis (ALS) is the most common type. MND is characterised by the progressive degeneration of upper and lower motor neurons, which leads to the wasting and weakness of limb, bulbar and respiratory muscles. MND is now recognised as a multisystem disease that can also cause cognitive and behavioural impairment. Family caregivers are often required to perform complex and challenging tasks comparable to those undertaken by Health Care Professional?s in order to provide and maintain the care for their loved one with MND in the home. These tasks can often come at a cost to their own emotional and physical health and wellbeing. While there has been increased attention given to the area of caregiver research, there remains limited data available for the development of supports and interventions for caregivers.
The primary aim of this thesis was to highlight the predictors of psychological distress of MND caregivers as well as highlight the complex needs of MND caregivers. This work aimed to contribute to the development and implementation of specific interventions that may be preventive for clinically adverse outcomes for the caregiver.
Through cross-sectional and longitudinal studies, the results indicate a number of specific vulnerabilities and factors that are associated with greater psychological distress experienced by caregivers, essential for the early signposting to services. Furthermore, a systematic review of the literature and qualitative studies outline the complex and psychological needs of MND caregivers, with attention given to barriers that may inhibit the uptake of available supports or interventions. The current research also conducted post-bereavement interviews in order to learn from the experience of bereaved MND caregivers.
The progressive, complex and individualistic nature of MND has been detailed in length in the chapters of this thesis and the impact of this disease on informal caregivers has been discussed. It is essential that caregivers external support needs are met so they are more freely available to attend appropriate interventions. There is an urgent need for a system of management to ensure the wellbeing of informal caregivers. This can be achieved through targeted intervention aimed specifically at caregivers? psychological needs, and ongoing education of HCPs to recognize the unmet and often undisclosed needs of informal caregivers.
Sponsor
Grant Number
The ALS Association (ALSA)
Research Motor Neuron
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https://tcdlocalportal.tcd.ie/pls/EnterApex/f?p=800:71:0::::P71_USERNAME:CARNEYSLDescription:
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Author: Carney, Síle
Advisor:
Pender, NiallHardiman, Orla
Publisher:
Trinity College Dublin. School of Medicine. Discipline of Clinical MedicineType of material:
ThesisCollections
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