Improving Transitions in Care for Patients and Family Caregivers Living in Rural and Underserved Areas: The Caregiver Advise, Record, Enable (CARE) Act

References

• Adler-Milstein, J., DesRoches, C. M., Kralovec, P., Foster, G., Worzala, C., Charles, D., Searcy, T., & Jha, A. K. (2015). Electronic health record adoption in US hospitals: Progress continues, but challenges persist. Health Affairs, 34(12), 2174–2180. https://doi.org/10.1377/hlthaff.2015.0992
   PubMed Web of Science ®Google Scholar
• Adler-Milstein, J., Holmgren, A. J., Kralovec, P., Worzala, C., Searcy, T., & Patel, V. (2017). Electronic health record adoption in US hospitals: The emergence of a digital “advanced use” divide. Journal of the American Medical Informatics Association, 24(6), 1142–1148. https://doi.org/10.1093/jamia/ocx080
   PubMed Web of Science ®Google Scholar
• Applebaum, A. J., Kent, E. E., & Lichtenthal, W. G. (2021). Documentation of caregivers as a standard of care. Journal of Clinical Oncology, 39(18), 1955–1958. https://doi.org/10.1200/JCO.21.00402
   PubMed Web of Science ®Google Scholar
• Bangerter, L. R., Fadel, M., Riffin, C., & Splaine, M. (2019). The older Americans act and family caregiving: Perspectives from federal and state levels. Public Policy Aging Rep, 29(2), 62–66. https://doi.org/10.1093/ppar/prz006
   PubMedGoogle Scholar
• Beatty, K., Heffernan, M., Hale, N., & Meit, M. (2020). Funding and service delivery in rural and urban local us health departments in 2010 and 2016. American Journal of Public Health, 110(9), 1293–1299. https://doi.org/10.2105/AJPH.2020.305757
   PubMed Web of Science ®Google Scholar
• Bouldin, E. D., Shaull, L., Andresen, E. M., Edwards, V. J., & McGuire, L. C. (2018). Financial and health barriers and caregiving‐related difficulties among rural and urban caregivers. The Journal of Rural Health, 34(3), 263–274. https://doi.org/10.1111/jrh.12273
   PubMed Web of Science ®Google Scholar
• Coleman, E. A. (2016). Family caregivers as partners in care transitions: The caregiver advise record and enable act. Journal of Hospital Medicine, 11(12), 883–885. https://doi.org/10.1002/jhm.2637
   PubMed Web of Science ®Google Scholar
• Coleman, E. A., & Roman, S. P. (2015). Family caregivers’ experiences during transitions out of hospital. The Journal for Healthcare Quality (JHQ), 37(1), 12–21. https://doi.org/10.1097/01.JHQ.0000460117.83437.b3
   PubMed Web of Science ®Google Scholar
• Crouch, E., Probst, J., & Bennett, K. (2017). Rural-urban differences in unpaid caregivers of adults. Rural and Remote Health, 17(4), 4351. https://doi.org/10.22605/rrh4351
   PubMed Web of Science ®Google Scholar
• Drew, G. H., Ryan, K., & Martsolf, G. R. (2019). When rural hospitals close, the physician workforce goes. Health Affairs, 38(12), 2086–2094. https://doi.org/10.1377/hlthaff.2019.00916
   Web of Science ®Google Scholar
• Duggleby, W., Penz, K., Goodridge, D., Wilson, D., Leipert, B., Berry, P., Keall, S., & Justice, C. (2010). The transition experience of rural older persons with advanced cancer and their families: A grounded theory study. BMC Palliative Care, 9(1), 5. https://doi.org/10.1186/1472-684X-9-5
   PubMedGoogle Scholar
• Fields, B., Rodakowski, J., Leighton, C., Feiler, C., Minnier, T., & James, A. E. (2020). Including and training family caregivers of older adults in hospital care: Facilitators and barriers. Journal of Nursing Care Quality, 35(1), 88–94. https://doi.org/10.1097/NCQ.0000000000000400
   PubMed Web of Science ®Google Scholar
• Gottlieb, L., Colvin, J. D., Fleegler, E., Hessler, D., Garg, A., & Adler, N. (2017). Evaluating the accountable health communities demonstration project. Journal of General Internal Medicine, 32(3), 345–349. https://doi.org/10.1007/s11606-016-3920-y
   PubMed Web of Science ®Google Scholar
• Henning-Smith, C., Lahr, M., & Casey, M. (2019). A national examination of caregiver use of and preferences for support services: Does rurality matter? Journal of Aging and Health, 31(9), 1652–1670. https://doi.org/10.1177/0898264318786569
   PubMed Web of Science ®Google Scholar
• Holland, D. E., Vanderboom, C. E., Dose, A. M., Moore, D., Robinson, K. V., Wild, E., Stiles, C., Ingram, C., Mandrekar, J., & Borah, B. (2021). Death and grieving for family caregivers of loved ones with life-limiting illnesses in the era of COVID-19: Considerations for case managers. Professional Case Management, 26(2), 53–61. https://doi.org/10.1097/NCM.0000000000000485
   PubMed Web of Science ®Google Scholar
• Holland, D. E., Vanderboom, C. E., Mandrekar, J., Borah, B. J., Dose, A. M., Ingram, C. J., & Griffin, J. M. (2020a). A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: Study protocol for a randomized controlled trial. Trials, 21(1), 895. https://doi.org/10.1186/s13063-020-04806-0
   PubMed Web of Science ®Google Scholar
• Hudson, P., Morrison, R. S., Schulz, R., Brody, A. A., Dahlin, C., Kelly, K., & Meier, D. E. (2020). Improving support for family caregivers of people with a serious illness in the United States: Strategic agenda and call to action. Palliative Medicine Reports, 1(1), 6–17. https://doi.org/10.1089/pmr.2020.0004
   PubMedGoogle Scholar
• Kripalani, S., Jackson, A. T., Schnipper, J. L., & Coleman, E. A. (2007). Promoting effective transitions of care at hospital discharge: A review of key issues for hospitalists. Journal of Hospital Medicine, 2(5), 314–323. https://doi.org/10.1002/jhm.228
   PubMed Web of Science ®Google Scholar
• Leighton, C., Fields, B., Rodakowski, J. L., Feiler, C., Hawk, M., Bellon, J. E., & James, A. E. (2019). A multisite case study of caregiver advise, record, enable act implementation. The Gerontologist, 60(4), 776–786. https://doi.org/10.1093/geront/gnz011
   Web of Science ®Google Scholar
• Levine, C. (2011). Supporting family caregivers: The hospital nurse’s assessment of family caregiver needs. AJN the American Journal of Nursing, 111(10), 47–51. https://doi.org/10.1097/01.NAJ.0000406420.35084.a1
   PubMed Web of Science ®Google Scholar
• Levine, C., Halper, D., Peist, A., & Gould, D. A. (2010). Bridging troubled waters: Family caregivers, transitions, and long-term care. Health Affairs, 29(1), 116–124. https://doi.org/10.1377/hlthaff.2009.0520
   PubMed Web of Science ®Google Scholar
• Levine, C., Halper, D., Rutberg, J., & Gould, D. A. (2013). Engaging family caregivers as partners in transitions: TC-QuIC: A quality improvement collaborative. Retrieved November 11, 2021, from United Hospital Fund. https://uhfnyc.org/news/article/united-hospital-fund-releases-two-guides-to-help-patients-family-caregivers-understand-what-to-expect-during-transition-from-hospital-to-home-care/
   Google Scholar
• Magilvy, J. K., & Congdon, J. G. (2000). The crisis nature of health care transitions for rural older adults. Public Health Nursing, 17(5), 336–345. https://doi.org/10.1046/j.1525-1446.2000.00336.x
   PubMed Web of Science ®Google Scholar
• Mason, D. (2017). Supporting family caregivers, one state at a time: The CARE act. JAMA Health Forum, A6(1). https://doi.org/10.1001/jamahealthforum.2017.0055
   Google Scholar
• Rodakowski, J., Leighton, C., Martsolf, G. R., & James, A. E. (2021). Caring for family caregivers: Perceptions of CARE act compliance and implementation. Quality Management in Healthcare, 30(1), 1–5. https://doi.org/10.1097/QMH.0000000000000278
   PubMed Web of Science ®Google Scholar
• Rodakowski, J., Rocco, P. B., Ortiz, M., Folb, B., Schulz, R., Morton, S. C., Leathers, S. C., Hu, L., & James, A. E., 3rd. (2017). Caregiver integration during discharge planning for older adults to reduce resource use: A metaanalysis. Journal of the American Geriatrics Society, 3(10), 14873. https://pubmed.ncbi.nlm.nih.gov/28369687/
   Google Scholar
• Rosenberg, M. W., & Eckstrom, E. (2020). Geographic differences in the unpaid caregiver experience from the national study of caregiving (NSOC). Rural and Remote Health, 20(4), 6062. https://doi.org/10.22605/rrh6062
   PubMed Web of Science ®Google Scholar
• Wolff, J. L., Darer, J. D., Berger, A., Clarke, D., Green, J. A., Stametz, R. A., Delbanco, T., & Walker, J. (2017). Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records. Journal of the American Medical Informatics Association, 24(e1), e166–e172. https://doi.org/10.1093/jamia/ocw108
   PubMed Web of Science ®Google Scholar
• Wolff, J. L., Darer, J. D., & Larsen, K. L. (2016). Family caregivers and consumer health information technology. Journal of General Internal Medicine, 31(1), 117–121. https://doi.org/10.1007/s11606-015-3494-0
   PubMed Web of Science ®Google Scholar