Informal caregiving Its association with patients' with ALS and their caregivers' quality of life, with particular interest in the difference between working aged adults and older than working age (>64) adults and those with greater and lesser physical disability

Title	Informal caregiving Its association with patients' with ALS and their caregivers' quality of life, with particular interest in the difference between working aged adults and older than working age (>64) adults and those with greater and lesser physical disability
Author	Kimball, Richard M.
Advisors	Miller, Nancy A.
Program	Public Policy
UMBC Department	Public Policy
Document Type	dissertation
Sponsors	University of Maryland, Baltimore County (UMBC)
Keywords	Amyotrophic Lateral Sclerosis; caregiver burden; formal caregiver; informal caregiver; PALS; quality of life
Date Issued	2010-01-01
Abstract	People with Amyotrophic Lateral Sclerosis (PALS) usually die within three to five years of onset. ALS is a terminal neuromuscular disease that affects middle aged adults leaving patients progressively weaker as it destroys motor neurons; eventually those affected lose all voluntary muscle control including muscles to walk, to move their arms, to speak, and to breathe- leading to respiratory distress and death. ALS leaves people disabled and dependent on caregivers (CGs) for all activities of daily living like eating, dressing and toileting. This leads to high CG burden and low reported quality of life (QOL) for PALS and their CGs. This exploratory study examined the association between CG burden and QOL for PALS and their CGs. Primary data collection with a sample of 104 PALS and their CGs was completed in a major tertiary care facility. Extending the existing literature, with is based on smaller samples and largely bivariate analyses, multivariate analyses examined the association between PALs' and CGs' characteristics and QOL. Further, a path analysis was used to explore the mediating effects of CG burden and hours of formal and informal caregiving. For PALS, CG burden did not have an association with PALS' QOL. However, spirituality, mental status, physical functioning and hours of formal caregiving were positively associated with QOL, while hours of informal caregiving were negatively associated with QOL. Among CGs, QOL was associated with CG burden, years caregiving, mental status, SES and primary insurance. The findings of this study suggest that PALS' QOL may be improved by supporting their informal and formal caregivers, increasing spirituality resources, offering sleep aids, improving mental status, supporting PALS who are not married and improving PALS' social support. Additional research, with a larger sample size, is needed to confirm this study's findings and more fully explore causal pathways.
Identifier	10304
Format	applicationpdf
Language	en
Collection	UMBC Theses and Disserations.
Rights Statement	This item may be protected under Title 17 of the U.S. Copyright Law. It is made available by UMBC for non-commercial research and education. For permission to publish or reproduce, please see http://aok.lib.umbc.edu/specoll/repro.php or contact Special Collections at speccoll(at)umbc.edu.
Source	Kimball_umbc_0434D_10304.pdf

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Informal caregiving Its association with patients' with ALS and their caregivers' quality of life, with particular interest in the difference between working aged adults and older than working age (>64) adults and those with greater and lesser physical disability

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