219
Views
0
CrossRef citations to date
0
Altmetric
Research Article

Challenges Experienced by Rural Informal Caregivers of Older Adults in the United States: A Scoping Review

, ORCID Icon, ORCID Icon, ORCID Icon &

References

  • AARP. (2020, May). Caregiving in the U.S. https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states
  • Administration for Community Living (ACL). (2021, March 5). National Family Caregiver Support Program. https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program
  • Anderson, R. (2007). Thematic content analysis (TCA). Descriptive Presentation of Qualitative Data, 1–4. http://rosemarieanderson.com/wp-content/uploads/2014/08/ThematicContentAnalysis.pdf
  • Arksey, H., & O’malley, L. (2005). Scoping studies: Toward a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
  • Avison, C., Brock, D., Campione, J., Hassell, S., Rabinovich, B., Ritter, R. Severynse, J., Yang, D., & Zebrak, K. (2018), December 5. Outcome evaluation of the national family caregiver support program. Administration for Community Living, https://acl.gov/sites/default/files/programs/2018-12/Caregiver_Outcome_Evaluation_Final_Report.pdf
  • 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
  • Caregiver Alliance, F. (2016). Caregiver Statistics: Demographics. https://www.caregiver.org/resource/caregiver-statistics-demographics/
  • Centers for Disease Control and Prevention. (2017, August 2). About rural health. https://www.cdc.gov/ruralhealth/about.html
  • Centers for Disease Control and Prevention. (2019, July 30). Caregiving for Family and Friends — A Public Health Issue. Alzheimer’s Disease and Healthy Aging. https://www.cdc.gov/aging/caregiving/caregiver-brief.html.
  • Chwalisz, K., Buckwalter, K. C., & Talley, R. C. (2011). Caregiving in rural America: A matter of culture. In R. C. Talley, K. Chwalisz, & K. C. Buckwalter (Eds), Rural caregiving in the United States (pp. 1–16). New York, NY: Springer-Verlag.
  • Cohen, S. A., Ahmed, N., Brown, M. J., Meucci, M. R., & Greaney, M. L. (2021). Rural-urban differences in informal caregiving and health-related quality of life. The Journal of Rural Health, 38(2), 442–456. https://doi.org/10.1111/jrh.12581
  • Cohen, S. A., Greaney, M. L., Sabik, N. J., & Cabieses, B. (2018). Assessment of dietary patterns, physical activity and obesity from a national survey: Rural-urban health disparities in older adults. Plos One, 13(12), e0208268. https://doi.org/10.1371/journal.pone.0208268
  • Cromartie, J. (2021, July 30). Rural aging occurs in different places for very different reasons. U.S. Department of Agriculture. https://www.usda.gov/media/blog/2018/12/20/rural-aging-occurs-different-places-very-different-reasons
  • Crouch, E., Probst, J. C., & Bennett, K. (2017). Rural-urban differences in unpaid caregivers of older adults. Rural and Remote Health, 17(1), 4351. https://doi.org/10.22605/RRH4351
  • Curtis, M. E., Clingan, S. E., Guo, H., Zhu, Y., Mooney, L. J., & Hser, Y. (2021). Disparities in digital access among rural households and implications for telemedicine-based services. The Journal of Rural Health, 38(3), 512–518. https://doi.org/10.1111/jrh.12614
  • Czaja, S. J., Lowenstein, D., Schulz, R., Nair, S. N., & Perdomo, D. (2013). A videophone psychosocial intervention for dementia caregivers. The American Journal of Geriatric Psychiatry, 21(11), 1071–1081. https://doi.org/10.1016/j.jagp.2013.02.019
  • Disbrow, E. A., Arnold, C. L., Glassy, N., Tilly, C. M., Langdon, K. M., Gungor, D., & Davis, T. C. (2021). Alzheimer disease and related dementia resources: Perspective of African American and caucasian American family caregivers in Northwest Louisiana. Journal of Applied Gerontology, 40(2), 209–219. https://doi.org/10.1177/0733464820904568
  • Gibson, A., Holmes, S. D., Fields, N. L., & Richardson, V. E. (2019). Providing care for persons with dementia in rural communities: Informal caregivers’ perceptions of supports and services. Journal of Gerontological Social Work, 62(6), 630–648. https://doi.org/10.1080/01634372.2019.1636332
  • Goins, R. T., Spencer, S. M., & Byrd, J. C. (2009). Research on rural caregiving: A literature review. Journal of Applied Gerontology, 28(2), 139–170. https://doi.org/10.1177/0733464808326294
  • Hall, S. A., Kaufman, J. S., & Ricketts, T. C. (2006). Defining urban and rural areas in US epidemiologic studies. Journal of Urban Health, 83(2), 162–175. https://doi.org/10.1007/s11524-005-9016-3
  • Hansen, L., Cartwright, J. C., & Craig, C. E. (2012). End-of-life rural care for rural-dwelling older adults and their primary family caregivers. Research in Gerontological Nursing, 5(1), 6–15. https://doi.org/10.3928/19404921-20111213-01
  • Health Resources and Services Administration. (2022, March). Defining Rural Population. https://www.hrsa.gov/rural-health/about-us/definition/index.html
  • Henning-Smith, C., Evenson, A., Kozhimannil, K., & Moscovice, I. (2018). Geographic variation in transportation concerns and adaptations to travel-limiting health conditions in the United States. Journal of Transport & Health, 8(1), 137–145. https://doi.org/10.1016/j.jth.2017.11.146
  • Henning-Smith, C., & Lahr, M. (2019). Rural-urban differences in workplace supports and impacts for employed caregivers. The Journal of Rural Health, 35(1), 49–57. https://doi.org/10.1111/jrh.12309
  • He, L., van Heugten, K., Perez-Y-Perez, M., & Zheng, Y. (2021). Issues of elder care among migrant workers in contemporary rural China: Filial piety redefined from a foucauldian perspective. Journal of Aging & Social Policy, 1–21. https://doi.org/10.1080/08959420.2021.1926203
  • Innes, A., Morgan, D., & Kostineuk, J. (2011). Dementia care in rural and remote settings: A systematic review of informal/family caregiving. Maturitas, 68(1), 34–46. https://doi.org/10.1016/j.maturitas.2010.10.002
  • Jensen, L., Monnat, S. M., Green, J. J., Hunter, L. M., & Sliwinski, M. J. (2020). Rural population health and aging: Toward a multilevel and multidimensional research agenda for the 2020s. American Journal of Public Health, 110(9), 1328–1331. https://doi.org/10.2105/AJPH.2020.305782
  • Ko, E., Fuentes, D., Singh-Carlson, S., & Nedjat-Haiem, F. (2020). Challenges and facilitators of hospice decision-making: A retrospective review of family caregivers of home hospice patients in a rural US–Mexico border region—a qualitative study. BMJ Open, 10(7), e035634. https://doi.org/10.1136/bmjopen-2019-035634
  • Lewis, J. P., Manson, S. M., Jernigan, V. B., Noonan, C., & Bowers, B. J. (2021). “Making sense of a disease that makes no sense”: Understanding Alzheimer’s disease and related disorders among caregivers and providers within Alaska native communities. The Gerontologist, 61(3), 363–373. https://doi.org/10.1093/geront/gnaa102
  • Li, H. (2006). Rural older adults’ access barriers to in-home and community-based services. Social Work Research, 30(2), 109–118. https://doi.org/10.1093/swr/30.2.109
  • Liechty, J. M. (2011). Health literacy: Critical opportunities for social work leadership in health care and research. Health & Social Work, 36(2), 99–107. https://doi.org/10.1093/hsw/36.2.99
  • Longstreth, M., McKibbin, C., Steinman, B., Slosser-Worth, A., & Carrico, C. (2020). Exploring informational and referral needs of individuals with dementias and informal caregivers in rural and remote areas. Clinical Gerontologist, 10(1), 1–13. https://pubmed.ncbi.nlm.nih.gov/31920164/
  • Look, K. A., & Stone, J. A. (2019). Contextual factors influencing medication management by rural informal caregivers of older adults. Research in Social and Administrative Pharmacy, 15(10), 1223–1229. https://doi.org/10.1016/j.sapharm.2018.10.007
  • Mbanaso, M. U., Shavelson, J., & Ukawuilulu, J. (2008). Elderly African Americans as intergenerational caregivers. Journal of Gerontological Social Work, 47(1), 3–15. https://doi.org/10.1300/J083v47n01_02
  • Pedersen, D. E., Minnotte, K. L., & Ruthig, J. C. (2020). Challenges of using secondary data to study rural caregiving within the United States. Sociological Inquiry, 90(4), 955–970. https://doi.org/10.1111/soin.12364
  • Poulin, L. I., Skinner, M. W., & Hanlon, N. (2020). Rural gerontological health: Emergent questions for research, policy and practice. Social Science & Medicine, 258, 113065. https://doi.org/10.1016/j.socscimed.2020.113065
  • Rhubart, D. C., Monnat, S. M., Jensen, L., Pendergrast, C., & Kaskie, B. (2021). The unique impacts of US social and health policies on rural population health and aging. Public Policy & Aging Report, 31(1), 24–29. https://doi.org/10.1093/ppar/praa034
  • Riffin, C., Wolff, J. L., Estill, M., Prabhu, S., & Pillemer, K. A. (2020). Caregiver needs assessment in primary care: Views of clinicians, staff, patients, and caregivers. Journal of the American Geriatrics Society, 68(6), 1262–1270. https://doi.org/10.1111/jgs.16401
  • Sanford, J. T., Johnson, A. D., & Townsend-Rocchiccioli, J. (2005). The health status of rural caregivers. Journal of Gerontological Nursing, 31(4), 25–31. https://doi.org/10.3928/0098-9134-20050401-07
  • Schulz, R., Beach, S. R., Czaja, S. J., Martire, L. M., & Monin, J. K. (2020). Family caregiving for older adults. Annual Review of Psychology, 71(1), 635–659. https://doi.org/10.1146/annurev-psych-010419-050754
  • Schwartz, A. J., & Jenkins, C. L. (2019). Barriers and facilitators to cancer treatment adherence for older rural African Americans: Understanding the experience from the view of patients and their caregivers. Journal of Family Social Work, 23(1), 20–34. https://doi.org/10.1080/10522158.2019.1658250
  • Shuffler, J. (2022). Challenges experienced by rural informal caregivers of older adults: A scoping review. [ Master’s thesis, University of Texas at Arlington]. http://hdl.handle.net/10106/30372
  • Symens-Smith, A., & Trevelyan, E. (2019, September). The older population in Rural America: 2012-2016. United States Census Bureau. https://www.census.gov/library/publications/2019/acs/acs-41.html
  • Tricco, A. C., Lillie, E., Zarin, W., O’brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C. … Straus, S. E. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org/10.7326/M18-0850
  • Wei, X., Zhang, Z., Walley, J. D., Hicks, J. P., Zeng, J., Deng, S., Zhou, Y., Yin, J., Newell, J. N., Sun, Q., Zou, G., Guo, Y., Upshur, E. G., & Lin, M. (2017). Effect of a training and educational intervention for physicians and caregivers on antibiotic prescribing for upper respiratory tract infections in children at primary care facilities in rural China: A cluster-randomised controlled trial. The Lancet Global Health, 5(12), e1258–1267. https://doi.org/10.1016/S2214-109X(17)30383-2
  • Williamson, H. J., McCarthy, M. J., Garcia, Y. E., Bacon, R., Dunn, D. J., Baldwin, J. A., & Kaskie, B. (2020). Addressing the needs of rural caregivers of individuals with Alzheimer’s disease and related dementias during and beyond coronavirus disease 2019 (COVID-19). Public Policy & Aging Report, 30(4), 178–180. https://doi.org/10.1093/ppar/praa024
  • Winterton, R., & Warburton, J. (2011). Models of care for socially isolated older rural carers: Barriers and implications. Rural and Remote Health, 11(3), 203–215. https://doi.org/10.22605/RRH1678

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.