ArticleBMC health services research2015
Informal caregivers of clients with neurological conditions: profiles, patterns and risk factors for distress from a home care prevalence study.
Article in BMC health services research, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 1 of them a synthesis that pooled it.
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Who cites it
35 citing papers in PubMed, 1 synthesis or guideline pooled it, 87 citations in OpenAlex.
- Health-related quality of life of informal carers in ALS: a systematic review of person reported outcome measures.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Pooled it
- The TBI-AD/ADRD Caregiver Support Intervention (TACSI): Protocol of a Pilot Randomized Controlled Trial Evaluation of a Remote Intervention for Family Caregivers.JMIR research protocols · 2026Article
- Developing, Implementing, and Evaluating a Care Management Model for Patients With Neuromuscular Diseases: Protocol for a Participatory Mixed Methods Study.JMIR research protocols · 2026Article
- Caregiver burden and psychosocial outcomes in owners of dogs with chronic paresis and paralysis compared with owners of healthy dogs.Frontiers in veterinary science · 2026Article
- The Development of Quality Indicators to Assess Family Wellbeing Outcomes Following Engagement with Children's Mental Health Services in Ontario, Canada.European journal of investigation in health, psychology and education · 2025Article
- Understanding health-related quality of life of informal carers in amyotrophic lateral sclerosis: a scoping review and conceptual framework.Health and quality of life outcomes · 2025Article
- Association between informal help and background factors for persons with multiple sclerosis in Sweden: a cross-sectional study.BMJ open · 2025Article
- The Hidden Value of Adult Informal Care in Europe.Health economics · 2025Article
- Screening of pregnant women for foetal neonatal alloimmune thrombocytopenia: A cost-utility analysis.Vox sanguinis · 2025Article
- Evaluating the web-based 'Partner in Balance' program for informal caregivers of people with Huntington's disease: A pilot study.Internet interventions · 2024Article
- Pan-Canadian estimates of the prevalence and risks associated with critical wandering among home care clients.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Profiling chronic diseases and hospitalizations in older home care recipients: a nationwide cohort study in Sweden.BMC geriatrics · 2024Article
- Caregiver Burden of Patients With Huntington's Disease in South Korea.Journal of movement disorders · 2024Article
- Psychological status on informal carers for stroke survivors at various phases: a cohort study in China.Frontiers in psychiatry · 2023Article
- Article
- Caring for older men and women: whose caregivers are more distressed? A population-based retrospective cohort study.BMC geriatrics · 2022Article
- Carer distress among community living older adults with complex needs in the pre- and post-COVID-19 era: a national population study.Scientific reports · 2022Article
- Implementation evaluation of a stepped approach to home care assessment using interRAI systems in Ontario, Canada.Health & social care in the community · 2022Article
- Caregivers' Profiles Based on the Canadian Occupational Performance Measure for the Adoption of Assistive Technologies.Sensors (Basel, Switzerland) · 2022Article
- Disease Burden of Huntington's Disease (HD) on People Living with HD and Care Partners in Canada.Journal of Huntington's disease · 2022Article
Corrections and comments
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Authors and funding
6 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIndividuals 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.
methodsThe 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.
resultsA 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.
conclusionsNeurological 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.
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