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Resources by Topic: Informal caregivers

Addressing the Shortage of Direct Care Workers: Insights from Seven States
Brief assessing efforts for strengthening and identifying federal policy opportunities related to the direct care workforce through interviews with 20 stakeholders in 7 states. Discusses federal funding, collaboration, workforce pipelines, equity, credentials, training, family caregivers, and home- and community-based services. Discusses rural throughout.
Author(s): Barbara Lyons, Molly O'Malley Watts
Date: 03/2024
Type: Document
Sponsoring organization: Commonwealth Fund
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Behavioral Health Services Outcomes That Matter Most to Caregivers of Children, Youth, and Young Adults with Mental Health Needs
Used focus groups that included rural caregivers of children with behavioral health needs to identify behavioral health service outcomes valued by caregivers. Discusses access to care, service delivery, provider communication, caregiver training, stigma, caregiver wellness, and more. Discusses rural issues throughout.
Author(s): Genevieve Graaf, Katherine Kitchens, Millie Sweeney, Kathleen C. Thomas
Citation: International Journal of Environmental Research and Public Health, 21(2), 172
Date: 02/2024
Type: Document
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Caregiving Across the Life Course in Rural and Urban Households in the North Central Region
A recorded webinar that discusses the NCR-Stat: Caregiving Across the Life Course Survey dataset that focuses on child, adult, and elder caregiving. Survey dataset explores how caregiving impacts economic development in rural and urban communities in the North Central Region.
Author(s): Zuzana Bednarik, Shoshanah Inwood, Florence Becot
Date: 02/2024
Type: Video/Multimedia
Sponsoring organization: North Central Regional Center for Rural Development
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Implementation Costs of Technology-Enhanced Transitional Palliative Care for Rural Caregivers
Examines the feasibility and sustainability of a family caregiver-focused transitional palliative care intervention that uses telehealth technologies. Presents results of a budget impact analysis of a randomized control trial, community-dwelling rural caregivers of hospitalized patients with a serious, life-limiting illness and receiving palliative care during hospitalization. Describes potential reimbursement mechanisms available to offset health system costs to providing transitional palliative care to support caregivers, including transitional care management and chronic care management service reimbursement.
Author(s): Brystana G. Kaufman, Diane E. Holland, Catherine E. Vanderboom, Cory Ingram, et al.
Citation: American Journal of Hospice and Palliative Care, 41(1), 38-44
Date: 01/2024
Type: Document
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Supporting People with Disabilities in Rural Communities, with Rayna Sage and Catherine Ipsen
An episode of the Exploring Rural Health podcast featuring Rayna Sage, PhD, and Catherine Ipsen, PhD, co-directors of the Research and Training Center on Disability in Rural Communities at the University of Montana. Focuses on the challenges facing rural people with disabilities and services and support systems that enable them to achieve and maintain quality of life.
Date: 01/2024
Type: Audio
Sponsoring organization: Rural Health Information Hub
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Sociodemographic Differences in COVID-19 Pandemic Experiences Among Families in the United States
Examines challenges experienced by individuals during the COVID-19 pandemic according to sociodemographic differences. Analyzes survey data focused on children and caregivers and their experiences with infection and testing, healthcare, school, access to food, child care and work, financial concerns, and more. Data is broken down by demographic variables such as caregiver education, age of children, and rural versus urban location.
Author(s): Kaja Z. LeWinn, Leonardo Trasande, Andrew Law, et al.
Citation: JAMA Network Open, 6(8)
Date: 08/2023
Type: Document
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Exploring the Other Side of Alzheimer's Disease and Related Dementia: Informal Caregivers
Provides national data on Alzheimer's Disease and Related Dementia (ADRD) informal caregivers. Includes information on metro versus nonmetro caregiver relationship to patient, gender, age, education, marital status, types of caregiving, and amount of time caregiving, utilizing data from the National Health and Aging Trends Study.
Author(s): Adee Athiyaman
Date: 08/2023
Type: Document
Sponsoring organization: Illinois Institute for Rural Affairs
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Palliative Care Needs and Preferences of Older Adults with Advanced or Serious Chronic Illnesses and their Families in Rural Communities of Indiana, USA
Presents the experiences of caregivers in rural Indiana related to palliative care, the needs of older adults with chronic illnesses, and the impacts on their families. Discusses themes such as managing pain, caregiver trust, distance and access to care, managing difficult conversations, caregiver burden, and use of telehealth in rural areas.
Author(s): Nasreen Lalani, Kawther Hamash, Yitong Wang
Citation: Journal of Rural Health, 40(2), 368-375
Date: 08/2023
Type: Document
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Arkansas State Plan on Aging: Fiscal Years 2024-2027
Provides direction for long-term care efforts in the state of Arkansas. Focuses on implementation of the Older American Act (OAA), COVID-19 recovery, equity, access to home and community-based services, and caregiving infrastructure. Highlights population data on rural Arkansas citizens and rural-specific priorities.
Date: 06/2023
Type: Document
Sponsoring organization: Arkansas Department of Human Services
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Listening to Riders and Providers: A Synthesis Report on NADTC's Focus Groups and Stakeholder Meetings
Summarizes findings from four focus groups exploring how perceptions of transportation users may be impacted by race, ethnicity, culture, or other personal characteristics. Presents findings from older adults, younger adults with disabilities, and caregivers. Also reports on stakeholder meetings with urban/suburban and rural stakeholders. Identifies lessons learned and next steps to inform transportation diversity, equity, and inclusion efforts.
Date: 02/2023
Type: Document
Sponsoring organization: National Aging and Disability Transportation Center
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