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Research ArticleOriginal Research

Care Transitions From Patient and Caregiver Perspectives

Suzanne E. Mitchell, Vivian Laurens, Gabriela M. Weigel, Karen B. Hirschman, Allison M. Scott, Huong Q. Nguyen, Jessica Martin Howard, Lance Laird, Carol Levine, Terry C. Davis, Brianna Gass, Elizabeth Shaid, Jing Li, Mark V. Williams and Brian W. Jack
The Annals of Family Medicine May 2018, 16 (3) 225-231; DOI: https://doi.org/10.1370/afm.2222
Suzanne E. Mitchell
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
MD, MS
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Vivian Laurens
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
MA
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Gabriela M. Weigel
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
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Karen B. Hirschman
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
PhD, MSW
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Allison M. Scott
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
PhD, MA
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Huong Q. Nguyen
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
PhD, RN
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Jessica Martin Howard
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
MA, MPH
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Lance Laird
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
ThD, MDiv
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Carol Levine
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
MA
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Terry C. Davis
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
PhD
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Brianna Gass
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
MPH
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Elizabeth Shaid
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
MSN
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Jing Li
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
MD, MS
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Mark V. Williams
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
MD
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Brian W. Jack
Department of Family Medicine, Boston Medical Center/Boston University School of Medicine, Boston, Massachusetts (Mitchell, Laurens, Weigel, Howard, Jack); School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania (Hirschman, Shaid); Department of Communication, University of Kentucky, Lexington, Kentucky (Scott); Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California (Nguyen); Medical Anthropology, Boston University School of Medicine, Boston, Massachusetts (Laird); Families and Health Care Project, United Hospital Fund, New York, New York (Levine); Department of Medicine and Pediatrics, Louisiana State University Health Sciences, New Orleans, Louisiana (Davis); Telligen, Quality Improvement, Des Moines, Iowa (Gass); Center for Health Services Research, University of Kentucky, Lexington, Kentucky (Li, Williams)
MD
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    Figure 1

    Conceptual model of relationship between care transition outcomes desired by patients and caregivers and care transition services and provider behaviors across the care continuum.

    PT = patient; CG = caregiver

Tables

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    Table 1

    Participant Demographics

    CharacteristicPatient (n = 138), No. (%)Caregiver (n = 110), No. (%)P Value
    Age<0.001a
     Range20–9019–81
     Average (Mean ± SD)61.23 ± 14.5455.67 ± 11.88
    Sex (missing = 1)<0.001
     Male59 (43.07)18 (16.36)
     Female78 (56.93)92 (83.64)
    Non-Hispanic racial breakdown (missing = 3)0.832b
     African American/black47 (34.31)41 (37.96)
     White67 (48.91)52 (48.15)
     White and African American/black0 (0.00)1 (0.93)
     Native Hawaiian/Pacific Islander1 (0.73)0 (0.00)
     American Indian/Alaskan3 (2.19)1 (0.93)
     Other19 (13.87)13 (12.04)
    Hispanic/Latino/Spanish origin (missing = 1)25 (18.25)22 (20.00)0.727
    Education level (missing = 1)<0.001
     Did not start or finish high school59 (43.07)16 (14.55)
     High school graduate or GED29 (21.17)36 (32.73)
     Trade or vocational school5 (3.65)8 (7.27)
     Some college or associates degree28 (20.44)20 (18.18)
     College graduate (BA, BS)7 (5.11)15 (13.64)
     Post-graduate degree9 (6.57)15 (13.64)
    Employment (missing = 1)<0.001b
     Full time3 (2.19)36 (32.73)
     Part time5 (3.65)8 (7.27)
     Retired50 (36.50)29 (26.36)
     Disabled73 (53.28)10 (9.09)
     Unemployed or laid off3 (2.19)15 (13.64)
     Other (homemaker, student, etc)3 (2.19)12 (10.91)
     Qualifies as low health literacy (missing = 1)60 (43.80)26 (23.64)0.0009
    Marital status (Missing = 2)N/A
     Married41 (30.15)N/A
     Divorced or separated31 (22.79)N/A
     Single without partner30 (22.06)N/A
     Single with partner11 (8.09)N/A
     Widowed23 (16.91)N/A
    Health insurance (missing = 1)N/AN/A
     Has Medicare135 (98.54)N/A
     Has Medicaid93 (67.88)N/A
     Has Medicare & Medicaid91 (66.42)N/A
    Has 3 or more chronic conditions (missing = 1)103 (75.18)N/AN/A
    Screened positive for depression (missing = 1) (Score >10 on PHQ8)40 (29.20)17 (15.45)0.011
    Screened positive for anxiety (missing = 1) (Score >10 on GAD7)35 (25.55)23 (20.91)0.393
    • GED = general equivalency diploma; BA = bachelor of arts; BS = bachelor of science; PHQ = personal health questionnaire; GAD = general anxiety disorder.

    • N/A indicates responses only provided by patient group.

    • P values calculated using the χ2 method unless noted.

    • ↵a 2 sided t-test

    • ↵b Fisher’s exact test

    • View popup
    Table 2

    Interview Guide Questions

    How were you prepared for going home? Please describe how your needs were addressed.
    How did you feel when providers were preparing you to leave the hospital?
    What was it like for you during the first few days at home after leaving the hospital?
    In your mind, what do people care most about when they are going home from the hospital?
    What helped you most once you returned home, and what was difficult?
    What could have made your transitional care experience better?

Additional Files

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    • Supplemental data: Appendix - PDF file
  • The Article in Brief

    Care Transitions From Patient and Caregiver Perspectives

    Suzanne E. Mitchell , and colleagues

    Background The transition from hospital to home can be hazardous for patients and caregivers, yet little is known about their experiences during such transitions. This study describes patient and caregiver experiences and desired outcomes during care transitions.

    What This Study Found In the transition from hospital to home, patients and caregivers seek clear accountability, continuity, and caring attitudes across the care continuum. One-hundred and thirty-eight patients and 110 family caregivers participating in focus groups and interviews identified three desired outcomes of care transition services: feeling prepared and able to implement care plans, unambiguous accountability from the healthcare system, and feeling cared for and cared about by clinicians. Five services or clinician behaviors were linked to these outcomes: providing actionable information; collaborative discharge planning involving patient and caregiver; using empathic language and gestures; anticipating the patient's need to support self-care at home; and providing uninterrupted care with minimal handoffs. When participants' desired outcomes were realized, they characterized care as excellent and trustworthy. In addition, caregivers experienced less distress and reported adherence to discharge plans increased. When desired outcomes were not met, patients and caregivers felt deserted by the health care system and perceived medical care as transactional and unsafe.

    Implications

    • Poor and fragmented care transition experiences, the authors suggest, can have substantial consequences, including creating patient and caregiver mistrust, anxiety, and confusion; precipitating family conflict; and contributing to inefficient care delivery, avoidable health system use, and delayed recovery.
    • To ensure that care transitions are safe and supportive of patients' recovery, the authors state that health systems must better prepare patients and caregivers for self-care at home and design accessible means of ongoing care support when and where it is needed.
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The Annals of Family Medicine: 16 (3)
The Annals of Family Medicine: 16 (3)
Vol. 16, Issue 3
May/June 2018
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Care Transitions From Patient and Caregiver Perspectives
Suzanne E. Mitchell, Vivian Laurens, Gabriela M. Weigel, Karen B. Hirschman, Allison M. Scott, Huong Q. Nguyen, Jessica Martin Howard, Lance Laird, Carol Levine, Terry C. Davis, Brianna Gass, Elizabeth Shaid, Jing Li, Mark V. Williams, Brian W. Jack
The Annals of Family Medicine May 2018, 16 (3) 225-231; DOI: 10.1370/afm.2222

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Care Transitions From Patient and Caregiver Perspectives
Suzanne E. Mitchell, Vivian Laurens, Gabriela M. Weigel, Karen B. Hirschman, Allison M. Scott, Huong Q. Nguyen, Jessica Martin Howard, Lance Laird, Carol Levine, Terry C. Davis, Brianna Gass, Elizabeth Shaid, Jing Li, Mark V. Williams, Brian W. Jack
The Annals of Family Medicine May 2018, 16 (3) 225-231; DOI: 10.1370/afm.2222
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