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Resources by Topic: Informal caregivers

Process Evaluation of the Older Americans Act Title III-E National Family Caregiver Support Program: Final Report
Reports on an evaluation of the National Family Caregiving Support Program and how it is helping people age in their own homes and communities. Includes a literature review on informal caregiving, a description of the evaluation methodology, and evaluation results. Covers the extent of, impact of, and supports for informal caregiving, as well as special issues such as caring for those with dementia and mental illness. Discusses the policies in place and includes data breakdowns for rural and frontier areas.
Date: 03/2016
Sponsoring organizations: Administration for Community Living, Lewin Group
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Systematic Review of Palliative Care in the Rural Setting
Synthesizes the results of an extensive search of the medical literature focused on the developments in palliative care for patients living in rural areas in the U.S. and internationally to determine where gaps in the research may occur. Suggests promising approaches including telehealth, community-academic partnerships, and training for rural healthcare providers.
Author(s): Marie A. Bakitas, Ronit Elk, Meka Astin, et al.
Citation: Cancer Control, 22(4), 450-464
Date: 10/2015
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Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial
Examines the effects of early versus delayed palliative care, the ENABLE (Educate, Nurture, Advise, Before Life Ends) model. ENABLE has shown to be an effective telehealth model particularly for patients with advanced stages of cancer and family caregivers in rural areas. Patient outcomes reported focused on quality of life, symptoms, temperament, survival rate, and hospital and clinical care use.
Author(s): Marie A. Bakitas, Tor D. Tosteson, Zhigang Li, et al.
Citation: Journal of Clinical Oncology, 33(13), 1438-1445
Date: 05/2015
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Benefits of Early Versus Delayed Palliative Care to Informal Family Caregivers of Patients With Advanced Cancer: Outcomes From the ENABLE III Randomized Controlled Trial
Examines the effects of introducing early palliative care intervention in rural settings for family caregivers (CGs) of patients with advanced-stage cancer by comparing the ENABLE (Educate, Nurture, Advise Before Life Ends) model of early palliative care with the customary cancer care. Addresses the CGs needs and how meeting these needs would support problem solving, decision-making, and advance care planning.
Author(s): J. Nicholas Dionne-Odom, Andres Azuero, Kathleen D. Lyons, et al.
Citation: Journal of Clinical Oncology, 33(13), 1446-1452
Date: 05/2015
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Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers
Reports on an evaluation study to determine the feasibility and satisfaction of converting a cancer-focused concurrent palliative care (PC) intervention into early PC for rural patients with a diagnosis of heart failure.
Author(s): J. Nicholas Dionne-Odom, Alan Kono, Jennifer Frost, et al.
Citation: Journal of Palliative Medicine, 17(9), 995-1004
Date: 09/2014
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Respite for Rural Family Caregivers: Overcoming the Challenges
Discusses care recipients and their caregivers who live in rural and frontier areas. Offers suggestions to assist family caregivers, respite providers and administrators, and Lifespan Respite grantees in finding or developing respite resources.
Date: 10/2012
Sponsoring organization: ARCH National Respite Network and Resource Center
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The 2006 Report to the Secretary: Rural Health and Human Service Issues
Report to the Secretary of the U.S. Department of Health and Human Services on issues related to rural America. Examines three key topics: access to pharmaceuticals and pharmacy services, health information technology, and family caregiver support of the rural elderly.
Date: 01/2006
Sponsoring organization: National Advisory Committee on Rural Health and Human Services
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Serving Older Veterans: Dementia Caregiver Video Series
Features a series of videos informing rural caregivers on challenges and methods for supporting veterans with dementia. Highlights issues pertaining to medication management, pain management, financial mismanagement, and safety risks, among others, for dementia patients.
Sponsoring organization: Veterans Health Administration's Office of Rural Health
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Rural Healthy Aging: Policy and Infrastructure Opportunities for the Rural Health Transformation Program (RHTP)
Offers recommendations for integrating aging-related policies into existing Rural Health Transformation Program plans. Includes recommendations around planning, access to care, caregiving, technology, aging in place, and integrated care models. Includes resources for implementation and information on funding.
Sponsoring organizations: National Rural Health Association, Stratis Health
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California MPA Data Dashboard for Aging
Offers interactive data indicating progress on the California Master Plan for Aging in the areas of housing, health, isolation, caregiving, and affordability. Includes rural and urban comparisons as well as county-level data.
Sponsoring organizations: California Department of Public Health, West Health
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