Characteristics and unmet care needs of unbefriended residents in long-term care: a qualitative interview study

References

• Bandy, R., Sachs, G. A., Montz, K., Inger, L., Bandy, R. W., & Torke, A. M. (2014). Wishard volunteer advocates program: An intervention for at-risk, incapacitated, unbefriended adults. Journal of the American Geriatrics Society, 62, 2171–2179.
   PubMed Web of Science ®Google Scholar
• Chamberlain, S., Baik, S., & Estabrooks, C. (2018). Going it alone: A scoping review of unbefriended older adults. Canadian Journal on Aging / La Revue Canadienne du Vieillissement, 37(1), 1.
   PubMed Web of Science ®Google Scholar
• Cloutier, D. S., & Penning, M. J. (2016). Janus at the crossroads: Perspectives on long-term care trajectories for older women with dementia in a Canadian context. The Gerontologist, 57(1), 68–81.
   PubMed Web of Science ®Google Scholar
• Cohen, A. B., Wright, M. S., Cooney, L., Jr., & Fried, T. (2015). Guardianship and end-of-life decision making. JAMA Internal Medicine, 175, 1687–1691.
   PubMed Web of Science ®Google Scholar
• Connor, D., Elkin, G., Lee, K., Thompson, V., Whelan, H., Connor, D. M., & Elkin, G. D. (2016). The unbefriended patient: An exercise in ethical clinical reasoning. Journal of General Internal Medicine, 31(1), 128–132.
   PubMed Web of Science ®Google Scholar
• Courtwright, A., & Rubin, E. (2016). Who should decide for the unrepresented? Bioethics, 30, 173–180.
   PubMed Web of Science ®Google Scholar
• Daly, T., Armstrong, P., & Lowndes, R. (2015). Liminality in Ontario’s long-term care facilities: Private companions’ care work in the space ‘betwixt and between’. Competition & Change, 19, 246–263.
   Web of Science ®Google Scholar
• Estabrooks, C. A., Hoben, M., Poss, J. W., Chamberlain, S. A., Thompson, G. N., Silvius, J. L., & Norton, P. G. (2015). Dying in a nursing home: treatable symptom burden and its link to modifiable features of work context. Journal of the American Medical Directors Association, 16, 515–520.
   PubMed Web of Science ®Google Scholar
• Farrell, T. W., Widera, E., Rosenberg, L., Rubin, C. D., Naik, A. D., Braun, U., … Shega, J. (2016). AGS position statement: Making medical treatment decisions for unbefriended older adults. Journal of the American Geriatrics Society.
   PubMed Web of Science ®Google Scholar
• Gaugler, J. E. (2005). Family involvement in residential long-term care: A synthesis and critical review. Aging & Mental Health, 9, 105–118.
   PubMed Web of Science ®Google Scholar
• Hennink, M. M., Kaiser, B. N., & Marconi, V. C. (2017). Code saturation versus meaning saturation: How many interviews are enough? Qualitative Health Research, 27, 591–608.
   PubMed Web of Science ®Google Scholar
• Hewko, S. J., Cooper, S. L., Huynh, H., Spiwek, T. L., Carleton, H. L., Reid, S., & Cummings, G. G. (2015). Invisible no more: A scoping review of the health care aide workforce literature. BMC Nursing, 14, 38.
   PubMed Web of Science ®Google Scholar
• Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: Institute of Medicine.
   Google Scholar
• Karp, N., & Wood, E. (2003). Incapacitated and alone: Health care decision-making for the unbefriended elderly (Report: 1-59031-272-4). Retrieved from https://www.americanbar.org/content/dam/aba/administrative/law_aging/2003_Unbefriended_Elderly_Health_Care_Descision-Making7-11-03.authcheckdam.pdf
   Google Scholar
• Krippendorff, K. (2004). Content analysis: An introduction to its methodology (2nd ed.). Thousand Oaks, CA: Sage.
   Google Scholar
• Lemke, S., & Schaefer, J. A. (2012). Addressing substance use disorders in VA nursing homes. Journal of Social Work Practice in the Addictions, 12(1), 89–106.
   Google Scholar
• Moye, J., Catlin, C., Kwak, J., Wood, E., Teaster, P., & Teaster, P. B. (2017). Ethical concerns and procedural pathways for patients who are incapacitated and alone: Implications from a qualitative study for advancing ethical practice. HEC Forum, 29, 171–189.
   PubMed Web of Science ®Google Scholar
• Outcalt, L. (2013). Paid companions: A private care option for older adults. Canadian Journal on Aging / La Revue Canadienne du Vieillissement, 32(1), 87–102.
   PubMed Web of Science ®Google Scholar
• Pope, T. M. (2017). Unbefriended and unrepresented: Better medical decision making for incapacitated patients without healthcare surrogates. Georgia State University Law Review, 33, 923–1019.
   Google Scholar
• Pope, T. M., & Sellers, T. (2012). The unbefriended: Making healthcare decisions for patients without surrogates (Part 1). Journal of Clinical Ethics, 23(1), 84–96.
   PubMedGoogle Scholar
• QSR International. (2015). NVivo 11 Qualitative analysis software.
   Google Scholar
• Reynolds, S. L. (2002). Guardianship primavera: A first look at factors associated with having a legal guardian using a nationally representative sample of community-dwelling adults. Aging & Mental Health, 6, 109–120.
   PubMed Web of Science ®Google Scholar
• Reynolds, S. L., & Carson, L. D. (1999). Dependent on the kindness of strangers: Professional guardians for older adults who lack decisional capacity. Aging & Mental Health, 3, 301–310.
   Web of Science ®Google Scholar
• Reynolds, S. L., & Wilber, K. H. (1997). Protecting persons with severe cognitive and mental disorders: An analysis of public conservatorship in Los Angeles County, California. Aging & Mental Health, 1(1), 87–98.
   Web of Science ®Google Scholar
• Richards, L. (1999). Using NVivo in qualitative research. Thousand Oaks, CA: Sage.
   Google Scholar
• Ryan-Nicholls, K. D., & Will, C. I. (2009). Rigour in qualitative research: mechanisms for control. Nurse Researcher, 16, 70–85.
   PubMedGoogle Scholar
• Sequeira, A. L.-S., & Lewis, A. (2017). Ethical and legal considerations in the management of an unbefriended patient in a vegetative state. Neurocritical Care, 27, 173–179.
   PubMed Web of Science ®Google Scholar
• Stadnyk, R. (2002). The status of Canadian nursing home care: Universality, accessibility, and comprehensiveness. Retrieved from Halifax, NS: https://cdn.dal.ca/content/dam/dalhousie/pdf/diff/ace-women-health/ACEWH_canadian_nursing_home_care.pdf
   Google Scholar
• Teaster, P. B. (1997). When the state takes over a life: The pubic guardian as public administrator. Virginia Polytechnic Institute and State University.
   Google Scholar
• Teaster, P. B. (2002). The wards of public guardians: Voices of the unbefriended. Family Relations, 51, 344–350.
   Web of Science ®Google Scholar
• Teaster, P. B. (2016). The importance of the values history for public guardianship.
   Google Scholar
• Teaster, P. B., & O’Brien, J. G. (2014). The elder mistreatment of overtreatment at end of life. Public Policy & Aging Report, 24, 92–96.
   Google Scholar
• Teaster, P. B., Schmidt, W. C., Jr., Wood, E., Lawrence, S. A., & Mendiondo, M. S. (2010). Public guardianship: In the best interest of incapacitated people? Santa Barbara, CA: Praeger Publishing.
   Google Scholar
• Tuckett, A. G. (2005). Applying thematic analysis theory to practice: A researcher’s experience. Contemporary Nurse: A Journal for the Australian Nursing Profession, 19(1–2), 75–87.
   PubMedGoogle Scholar
• White, D. B., Jonsen, A., & Lo, B. (2012). Ethical challenge: When clinicians act as surrogates for unrepresented patients. American Journal of Critical Care, 21, 202–207.
   PubMed Web of Science ®Google Scholar