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Informal caregivers of clients with neurological conditions: profiles, patterns and risk factors for distress from a home care prevalence study.

Mitchell LA, Hirdes J, Poss JW, Slegers-Boyd C, Caldarelli H, Martin L - BMC Health Serv Res (2015)

Bottom Line: Logistic regression analysis was used to identify risk factors associated with caregiver distress.The largest associations with caregiver distress were the amount of informal care hours provided in a week and the MAPLe algorithm, an indicator of a client's level of priority for care.Provision of formal home care services provided a protective effect from caregiver distress.

View Article: PubMed Central - PubMed

Affiliation: Home Care Program, Winnipeg Regional Health Authority, Winnipeg, Manitoba, Canada. lmitchell3@wrha.mb.ca.

ABSTRACT

Background: Individuals living in the community with neurological conditions receive the majority of their care from informal caregivers. The purpose of this project was to provide a profile of caregivers of home care clients with neurological conditions. The study also examined prevalence of caregiver distress and the association between neurological conditions and other client and caregiver characteristics with distress.

Methods: The study population included Canadian home care clients in the Winnipeg Regional Health Authority in Manitoba and in the province of Ontario. Clients with RAI-Home Care (RAI-HC) assessment data from 2003 to 2010 were examined. Neurological conditions of interest included Alzheimer's disease and related dementias, multiple sclerosis, amyotrophic lateral sclerosis, Parkinson's disease, Huntington disease, epilepsy, muscular dystrophy, cerebral palsy, traumatic brain injury, spinal cord injury, and stroke. Descriptive statistics were analyzed to describe home care client characteristics and caregiver characteristics for each neurological condition. Logistic regression analysis was used to identify risk factors associated with caregiver distress.

Results: A substantial proportion of home care clients were found to have one or more of the neurological conditions (38.8% to 41.9%). Caregiver distress was twice as prevalent among caregivers of clients with neurological conditions (28.0%). The largest associations with caregiver distress were the amount of informal care hours provided in a week and the MAPLe algorithm, an indicator of a client's level of priority for care. After adjustment for client characteristics, Huntington disease was the neurological condition most strongly associated with caregiver distress. However, clients' clinical characteristics and informal care hours had a stronger association with caregiver distress than the presence of a neurological condition. Provision of formal home care services provided a protective effect from caregiver distress.

Conclusions: Neurological conditions are common among home care clients and a significant proportion of informal caregivers providing care to these clients experience distress. The complexity of clients with neurological conditions suggests the need for multicomponent support strategies for informal caregivers.

No MeSH data available.


Related in: MedlinePlus

Caregiver Distress by MAPLe Score and Diagnosis (Total Study Sample). Figure 1 illustrates that the percentage of distressed caregivers becomes greater with each increase in the five MAPLe priority levels, for each specific neurological condition
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Fig1: Caregiver Distress by MAPLe Score and Diagnosis (Total Study Sample). Figure 1 illustrates that the percentage of distressed caregivers becomes greater with each increase in the five MAPLe priority levels, for each specific neurological condition

Mentions: The MAPLe decision support algorithm was designed to be used to inform home care professionals decisions about prioritization of access to community and facility services based on various combinations of functional and clinical need indicators. The logistic regression analysis identified that the MAPLe algorithm had one of the strongest associations with caregiver distress. Figure 1 illustrates that the percentage of distressed caregivers became greater with each increase in the five MAPLe priority levels, for each specific neurological condition. However, while the pattern of increase was the same, the percentage of caregivers exhibiting distress was varied within groups. For example, at the highest MAPLe priority level, only 35 % of caregivers of clients with CP or epilepsy exhibited distress while 53 % of caregivers of clients with ALS exhibited distress. Figure 2 illustrates a nearly identical pattern of increase in caregiver distress with each increasing MAPLe level when the WRHA and Ontario data were examined separately.Fig. 1


Informal caregivers of clients with neurological conditions: profiles, patterns and risk factors for distress from a home care prevalence study.

Mitchell LA, Hirdes J, Poss JW, Slegers-Boyd C, Caldarelli H, Martin L - BMC Health Serv Res (2015)

Caregiver Distress by MAPLe Score and Diagnosis (Total Study Sample). Figure 1 illustrates that the percentage of distressed caregivers becomes greater with each increase in the five MAPLe priority levels, for each specific neurological condition
© Copyright Policy - OpenAccess
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4552273&req=5

Fig1: Caregiver Distress by MAPLe Score and Diagnosis (Total Study Sample). Figure 1 illustrates that the percentage of distressed caregivers becomes greater with each increase in the five MAPLe priority levels, for each specific neurological condition
Mentions: The MAPLe decision support algorithm was designed to be used to inform home care professionals decisions about prioritization of access to community and facility services based on various combinations of functional and clinical need indicators. The logistic regression analysis identified that the MAPLe algorithm had one of the strongest associations with caregiver distress. Figure 1 illustrates that the percentage of distressed caregivers became greater with each increase in the five MAPLe priority levels, for each specific neurological condition. However, while the pattern of increase was the same, the percentage of caregivers exhibiting distress was varied within groups. For example, at the highest MAPLe priority level, only 35 % of caregivers of clients with CP or epilepsy exhibited distress while 53 % of caregivers of clients with ALS exhibited distress. Figure 2 illustrates a nearly identical pattern of increase in caregiver distress with each increasing MAPLe level when the WRHA and Ontario data were examined separately.Fig. 1

Bottom Line: Logistic regression analysis was used to identify risk factors associated with caregiver distress.The largest associations with caregiver distress were the amount of informal care hours provided in a week and the MAPLe algorithm, an indicator of a client's level of priority for care.Provision of formal home care services provided a protective effect from caregiver distress.

View Article: PubMed Central - PubMed

Affiliation: Home Care Program, Winnipeg Regional Health Authority, Winnipeg, Manitoba, Canada. lmitchell3@wrha.mb.ca.

ABSTRACT

Background: Individuals living in the community with neurological conditions receive the majority of their care from informal caregivers. The purpose of this project was to provide a profile of caregivers of home care clients with neurological conditions. The study also examined prevalence of caregiver distress and the association between neurological conditions and other client and caregiver characteristics with distress.

Methods: The study population included Canadian home care clients in the Winnipeg Regional Health Authority in Manitoba and in the province of Ontario. Clients with RAI-Home Care (RAI-HC) assessment data from 2003 to 2010 were examined. Neurological conditions of interest included Alzheimer's disease and related dementias, multiple sclerosis, amyotrophic lateral sclerosis, Parkinson's disease, Huntington disease, epilepsy, muscular dystrophy, cerebral palsy, traumatic brain injury, spinal cord injury, and stroke. Descriptive statistics were analyzed to describe home care client characteristics and caregiver characteristics for each neurological condition. Logistic regression analysis was used to identify risk factors associated with caregiver distress.

Results: A substantial proportion of home care clients were found to have one or more of the neurological conditions (38.8% to 41.9%). Caregiver distress was twice as prevalent among caregivers of clients with neurological conditions (28.0%). The largest associations with caregiver distress were the amount of informal care hours provided in a week and the MAPLe algorithm, an indicator of a client's level of priority for care. After adjustment for client characteristics, Huntington disease was the neurological condition most strongly associated with caregiver distress. However, clients' clinical characteristics and informal care hours had a stronger association with caregiver distress than the presence of a neurological condition. Provision of formal home care services provided a protective effect from caregiver distress.

Conclusions: Neurological conditions are common among home care clients and a significant proportion of informal caregivers providing care to these clients experience distress. The complexity of clients with neurological conditions suggests the need for multicomponent support strategies for informal caregivers.

No MeSH data available.


Related in: MedlinePlus