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Who’s in charge? Results from a qualitative study of caregiver perspectives on the care transition process

Benjamin Shirley, Nathaniel Erskine, David D McManus, Catarina I Kiefe, Milena Anatchkova, Heena P Santry


Background: Care transitions are a topic of increasing interest as researchers and clinicians focus their effects on patient outcomes. Engaging caregivers, who play important roles in care transitions, may yield valuable insight into how care transition processes can be improved. 

Methods: We conducted semi-structured interviews, focusing on caregivers’ experiences with and perceptions of care transitions, with 11 eligible caregivers whose loved ones had recently experienced an unplanned admission to a single academic medical center. Our research team analyzed the transcripts to identify key themes.

Results: Caregivers detailed multiple factors affecting care transitions, including both in-hospital and external elements. Identifying the medical provider in charge of care emerged as a common difficulty. Other areas of interest included receiving discharge information, length of stay, health insurance status, the presence of social support, access to transportation and educational level, among others. Caregivers’ views on the quality of various in-hospital aspects of their own care transition experiences varied.

Conclusions: Caregivers re-affirmed the complexity of the care transition process by identifying myriad factors that influence their quality. Taking steps to address these factors may help hospitals to empower and engage caregivers, as well as to improve care transitions overall and better manage the health of their patients.


Caregiver perspectives, caregivers, discharge planning, follow-up, patient-centered care, patient discharge, patient education, patient satisfaction, person-centered healthcare, qualitative research, quality of care, socioeconomics, transition complexity

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Community-based Care Transitions Program.(2001). Centers for Medicare and Medicaid Services. Available at: Accessed February 10, 2017

Moore, C., Wisnivesky, J., Williams, S. & McGinn, T. (2003). Medical errors related to discontinuity of care from an inpatient to an outpatient setting. Journal of General Internal Medicine 18 (8) 646-651.

Naylor, M.D., Aiken, L.H., Kurtzman, E.T., Olds, D.M. & Hirschman, K.B. (2011). The care span: The importance of transitional care in achieving health reform. Health Affairs 30 (4) 746-754.

Burt, C.W., McCaig, L.F. & Simon, A.E. (2008). Emergency department visits by persons recently discharged from U.S. hospitals. National Health Statistics Reports No 6 1-9.

Sabogal, F., Coots-Miyazaki, M. & Lett, J.E. (2007). Ten effective care transitions interventions: Improving patient safety and healthcare quality. CAHQ 31, 15-19.

Perry, M. (2013). Hospital Readmissions From the Inside Out: Stories From Patients and Health Care Providers. Princeton, NJ: Robert Wood Johnson Foundation.

Aspden, P., Wolcott, J., Bootman, J.L. & Cronenwett, L.R. (Eds.). (2007). Preventing Medication Errors: Quality Chasm Series. Washington, DC: The National Academies Press.

Anderson, G. (2010). Chronic Care: Making the Case for Ongoing Care. Princeton, NJ: Robert Wood Johnson Foundation.

Snow, V., Beck, D., Budnitz, T., Miller, D.C., Potter, J., Wears, R.L., Weiss, K.B. & Williams, M.V. (2009). Transitions of Care Consensus policy statement: American College of Physicians, Society of General Internal Medicine, Society of Hospital Medicine, American Geriatrics Society, American College of Emergency Physicians, and Society for Academic Emergency Medicine. Journal of Hospital Medicine 4 (6) 364-370.

Glajchen, M. (2004). The emerging role and needs of family caregivers in cancer care. Journal of Supportive Oncology 2 (2) 145-155.

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.

Foust, J.B., Vuckovic, N. & Henriquez, E. (2012). Hospital to home health care transition: patient, caregiver, and clinician perspectives. Western Journal of Nursing Research 34, 194-212.

Ventura, T., Brown, D., Archibald, T., Goroski, A. & Brock, J. (2010). Improving Care Transitions And Reducing Hospital Readmissions: Establishing The Evidence For Community-Based Implementation Strategies Through The Care Transitions Theme. The Remington Report. pp. 26-30. Laguna Niguel, CA: The Remington Report.

Coleman, E.A., Parry, C., Chalmers, S. & Min, S.J. (2006). The care transitions intervention: results of a randomized controlled trial. Archives of Internal Medicine 166 (17) 1822-1828.

Naylor, M.D., Brooten, D.A., Campbell, R.L., Maislin, G., McCauley, K.M. & Schwartz, J.S. (2004). Transitional care of older adults hospitalized with heart failure: a randomized, controlled trial. Journal of the American Geriatrics Society 52 (5) 675-684.

Gaugler, J.E. & Teaster, P. (2006). The family caregiving career: implications for community-based long-term practice and policy. Journal of Aging & Social Policy 18 (3-4) 141-154.

Rozario, P.A. & Palley, E. (2008). When the private sphere goes public: exploring the issues facing family caregiver organizations in the development of long-term care policies. Social Work in Public Health 23 (4) 49-68.

Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S.D., Russell, D., Swinton, M., Zhu, B. & Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics 115 (6) e626-e636.

Awad, A.G. & Voruganti, L.N. (2008). The burden of schizophrenia on caregivers: a review. Pharmacoeconomics 26 (2) 149-162.

Coleman, E.A., Mahoney, E. & Parry, C. (2005). Assessing the quality of preparation for posthospital care from the patient's perspective: the care transitions measure. Medical Care 43 (3) 246-255.

Corbin, J.M. & Strauss, A,L. (2015). Basics of qualitative research : techniques and procedures for developing grounded theory. Fourth edition. Los Angeles: SAGE.

Malterud, K. (2001). Qualitative research: standards, challenges, and guidelines. Lancet 358, 483-488.

Strauss, A.L. & Corbin, J.M. (1998). Basics of qualitative research: techniques and procedures for developing grounded theory. 2nd edn. Thousand Oaks: Sage Publications.

Bradley, E.H., Curry, L.A. & Devers, K.J. (2007). Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Services Research 42 (4) 1758-1772.

Morse, J.M. (2004). Theoretical saturation. The SAGE Encyclopedia of Social Science Research Methods. Thousand Oaks: SAGE Publications.

Mitchell, P., Wynia, M., Golden, R., McNellis, B., Okun, S., Webb, C.E., Rohrbach, V. & Von Kohorn, I. (2012). Core principles & values of effective team-based health care. Discussion Paper, Institute of Medicine, Washington, DC.

Epstein, R.M. & Street, R.L. (2011). The values and value of patient-centered care. Annals of Family Medicine 9 (2) 100-103.

Stewart, M.A. (1995). Effective physician-patient communication and health outcomes: a review. Canadian Medical Association Journal 152, 1423-1433.

Kelley, J.M., Kraft-Todd, G., Schapira, L., Kossowsky, J. & Riess, H. (2014). The influence of the patient-clinician relationship on healthcare outcomes: a systematic review and meta-analysis of randomized controlled trials. PLoS One 9 (4) e94207.

Harrington, J., Noble, L.M. & Newman, S.P. (2004). Improving patients' communication with doctors: a systematic review of intervention studies. Patient Education and Counseling 52, 7-16.

Sehgal, N.L., Green, A., Vidyarthi, A.R., Blegen, M.A. & Wachter, R.M. (2010). Patient whiteboards as a communication tool in the hospital setting: a survey of practices and recommendations. Journal of Hospital Medicine 5 (4) 234-239.

Singh, S., Fletcher, K.E., Pandl, G.J., Schaoira, M.M., Nattinger, A.B., Biblo, L.A. & Whittle, J. (2011). It’s the writing on the wall: Whiteboards improve inpatient satisfaction with provider communication. American Journal of Medical Quality 26 (2) 127-131.

Why Our Rounds are Effective. [Cincinnati Children’s Hospital: Patient- and family-centered rounds are an active process that facilitates an open exchange of information and ideas among the patient, family and all of the patient’s healthcare providers.]. Available at: Accessed February 20, 2017.

Johnson, A. & Sandford, J. (2005). Written and verbal information versus verbal information only for patients being discharged from acute hospital settings to home: systematic review. Health Education Research 20, 423-429.

Spandorfer, J.M., Karras, D.J., Hughes, L.A. & Caputo, C. (1995). Comprehension of discharge instructions by patients in an urban emergency department. Annals of Emergency Medicine 25 (1) 71-74.

Fagermoen, M.S. & Hamilton, G. (2006). Patient information at discharge--a study of a combined approach. Patient Education and Counseling 63, 169-176.

VanSuch, M., Naessens, J.M., Stroebel, R.J., Huddleston, J.M. & Williams, A.R. (2006). Effect of discharge instructions on readmission of hospitalised patients with heart failure: do all of the Joint Commission on Accreditation of Healthcare Organizations heart failure core measures reflect better care? Quality & Safety in Health Care 15 (6) 414-417.

Stewart, M., Brown, J.B., Donner, A., McWhinney, I.R., Oates, J., Weston, W.W. & Jordan, J. (2000). The impact of patient-centered care on outcomes. Journal of Family Practice 49 (9) 796-804.

Bueno, H., Ross, J.S., Wang, Y., Chen, J., Vidán, M.T., Normand, S.L., Curtis, J.P., Drye, E.E., Lichtman, J.H., Keehan, P.S., Kosiborod, M. & Krumholz, H.M. (2010). Trends in length of stay and short-term outcomes among Medicare patients hospitalized for heart failure, 1993-2006. Journal of the American Medical Association 303 (21) 2141-2147.

Baker, D.W., Einstadter, D., Husak, S.S. & Cebul, R.D. (2004). Trends in postdischarge mortality and readmissions: has length of stay declined too far? Archives of Internal Medicine 164 (5) 538-544.

Saczynski, J.S., Lessard, D., Spencer, F.A., Gurwitz, J.H., Gore, J.M., Yarzebski, J. & Goldberg, R.J. (2010). Declining length of stay for patients hospitalized with AMI: impact on mortality and readmissions. American Journal of Medicine 123 (11) 1007-1015.

Kandula, P.V. & Wenzel, R.P. (1993). Postoperative wound infection after total abdominal hysterectomy: a controlled study of the increased duration of hospital stay and trends in postoperative wound infection. American Journal of Infection Control 21, 201-204.

Svendsen, M.L., Ehlers, L.H., Andersen, G. & Johnsen, S.P. Quality of care and length of hospital stay among patients with stroke. Medical Care 47 (5) 575-582.

Thomas, J.W., Guire, K.E. & Horvat, G.G. (1997). Is patient length of stay related to quality of care? Hospital & Health Services Administration 42, 489-507.

DiMatteo, M.R. (2004). Social support and patient adherence to medical treatment: a meta-analysis. Health Psychology 23, 207-218.

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.

Reiss, J.G., Gibson, R.W. & Walker, L.R. (2005). Health care transition: youth, family, and provider perspectives. Pediatrics 115, 112-120.

Magilvy, J.K. & Congdon, J.G. (2000). The crisis nature of health care transitions for rural older adults. Public Health Nursing 17, 336-345.

Johnston, B., Wheeler, L., Deuser, J. & Sousa, K.H. (2000). Outcomes of the Kaiser Permanente Tele-Home Health Research Project. Archives of Family Medicine 9, 40-45.

Health Insurance Coverage of the Total Population. [Kaiser Family Foundation interactive database detailing insurance coverage in the US by year, state, group, and other criteria.]. Available at: Accessed February 20, 2017.

Himmelstein, D.U., Thorne, D., Warren, E. & Woolhandler, S. (2009). Medical bankruptcy in the United States, 2007: results of a national study. American Journal of Medicine 122 (8) 741-746.

Zuvekas S.H. & Taliaferro, G.S. (2003). Pathways to access: health insurance, the health care delivery system, and racial/ethnic disparities, 1996-1999. Health Affairs 22, 139-153.

Wilper, A.P., Woolhandler, S., Lasser, K.E., McCormick, D., Bor, D.H. & Himmelstein, D.U. (2009). Health insurance and mortality in US adults. American Journal of Public Health 99 (12) 2289-2295.

Waisman, Y., Siegal, N., Chemo, M., Siegal, G., Amir, L., Blachar, Y. & Mimouni, M. (2003). Do parents understand emergency department discharge instructions? A survey analysis. Israel Medical Association Journal 5 (8) 567-570.

Spandorfer, J.M., Karras, D.J., Hughes, L.A. & Caputo, C. (1995). Comprehension of discharge instructions by patients in an urban emergency department. Annals of Emergency Medicine 25 (1) 71-74.

Clarke, C., Friedman, S.M., Shi, K., Arenovitch, T., Monzon, J. & Culligan, C. (2005). Emergency department discharge instructions comprehension and compliance study. CJEM 7 (1) 5-11.

Dewalt, D.A., Berkman, N.D., Sheridan, S., Lohr, K.N. & Pigone, M.P. (2004). Literacy and health outcomes: a systematic review of the literature. Journal of General Internal Medicine 19 (12) 1228-1239.

Saha, S., Arbelaez, J.J. & Cooper, L.A. (2003). Patient-physician relationships and racial disparities in the quality of health care. American Journal of Public Health 93,1713-1719.

Fiscella, K., Franks, P., Gold, M.R. & Clancy, C.M. (2000) Inequality in quality: Addressing socioeconomic, racial, and ethnic disparities in health care. Journal of the American Medical Association 283 (19) 2579-2584.

HHS Action Plan to Reduce Racial and Ethnic Health Disparities. (2011). Washington, DC: U.S. Department of Health and Human Services.

Flores, G. (2005). The impact of medical interpreter services on the quality of health care: a systematic review. Medical Care Research and Review 62 (3) 255-299.

Fiscella, K., Franks, P., Doescher, M.P. & Saver, B.G. (2002). Disparities in health care by race, ethnicity, and language among the insured: findings from a national sample. Medical Care 40 (1) 52-59.

Flores, G., Laws, M.B., Mayo, S.J., Zuckerman, B., Abreu, M., Medina, L. & Hardt, E.J. (2003). Errors in medical interpretation and their clinical consequences in pediatric encounters. Pediatrics 111 (1) 6-14.



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