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Volumn 23, Issue 1, 2016, Pages 94-104

Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation

Author keywords

Bone marrow transplantation; Electronic health records; Inpatients; Patient participation; Patient centered care

Indexed keywords

ANXIETY; CAREGIVER; CHILD; CLINICAL STUDY; CLINICAL TRIAL; DOCTOR PATIENT RELATION; ELECTRONIC MEDICAL RECORD; GROUNDED THEORY; HEMATOPOIETIC STEM CELL TRANSPLANTATION; HOSPITAL DISCHARGE; HOSPITAL PATIENT; HUMAN; LEARNING; MEDICAL INFORMATION; OUTPATIENT; SEMI STRUCTURED INTERVIEW; ELECTRONIC HEALTH RECORD; HOSPITALIZATION; HUMAN RELATION; INFORMATION SEEKING; INTERVIEW; MICHIGAN; PARENT; PATIENT CARE; PATIENT PARTICIPATION; PATIENT RIGHT;

EID: 84959499713     PISSN: 10675027     EISSN: 1527974X     Source Type: Journal    
DOI: 10.1093/jamia/ocv116     Document Type: Article
Times cited : (65)

References (56)
  • 2
    • 84902362096 scopus 로고    scopus 로고
    • Patient engagement in the inpatient setting: a systematic review
    • Prey JE, Woollen J, Wilcox L, et al. Patient engagement in the inpatient setting: a systematic review. JAMIA. 2014;21(4):742-750.
    • (2014) JAMIA , vol.21 , Issue.4 , pp. 742-750
    • Prey, J.E.1    Woollen, J.2    Wilcox, L.3
  • 3
    • 84874786358 scopus 로고    scopus 로고
    • Shared decision making: examining key elements and barriers to adoption into routine clinical practice
    • Legare F, Witteman HO. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health Aff. 2013;32(2):276-284.
    • (2013) Health Aff , vol.32 , Issue.2 , pp. 276-284
    • Legare, F.1    Witteman, H.O.2
  • 4
    • 77955285001 scopus 로고    scopus 로고
    • Open notes: doctors and patients signing on
    • Delbanco T, Walker J, Darer JD, et al. Open notes: doctors and patients signing on. Ann Intern Med. 2010;153(2):121-125.
    • (2010) Ann Intern Med , vol.153 , Issue.2 , pp. 121-125
    • Delbanco, T.1    Walker, J.2    Darer, J.D.3
  • 5
    • 84859645539 scopus 로고    scopus 로고
    • Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes project
    • Leveille SG, Walker J, Ralston JD, et al. Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes project. BMC Med Inform Decis Mak. 2012;12:32.
    • (2012) BMC Med Inform Decis Mak , vol.12 , pp. 32
    • Leveille, S.G.1    Walker, J.2    Ralston, J.D.3
  • 6
    • 84902377986 scopus 로고    scopus 로고
    • How outcomes are achieved through patient portals: a realist review
    • Otte-Trojel T, de Bont A, Rundall TG, et al. How outcomes are achieved through patient portals: a realist review. JAMIA. 2014;21(4):751-757.
    • (2014) JAMIA , vol.21 , Issue.4 , pp. 751-757
    • Otte-Trojel, T.1    de Bont, A.2    Rundall, T.G.3
  • 7
    • 84892762474 scopus 로고    scopus 로고
    • Care partners and online patient portals
    • Sarkar U, Bates DW. Care partners and online patient portals. JAMA. 2014;311(4):357-358.
    • (2014) JAMA , vol.311 , Issue.4 , pp. 357-358
    • Sarkar, U.1    Bates, D.W.2
  • 8
    • 84874787010 scopus 로고    scopus 로고
    • A national action plan to support consumer engagement via e-health
    • Ricciardi L, Mostashari F, Murphy J, et al. A national action plan to support consumer engagement via e-health. Health Aff. 2013;32(2):376-384.
    • (2013) Health Aff , vol.32 , Issue.2 , pp. 376-384
    • Ricciardi, L.1    Mostashari, F.2    Murphy, J.3
  • 9
    • 0034459145 scopus 로고    scopus 로고
    • The Intellectual Challenge of CSCW: the gap between social requirements and technical feasibility
    • Ackerman M. The Intellectual Challenge of CSCW: the gap between social requirements and technical feasibility. Hum Comput Int. 2000;15(2): 179-203.
    • (2000) Hum Comput Int , vol.15 , Issue.2 , pp. 179-203
    • Ackerman, M.1
  • 10
    • 2342460300 scopus 로고    scopus 로고
    • Incorporating ideas from computer-supported cooperative work
    • Pratt W, Reddy MC, McDonald DW, et al. Incorporating ideas from computer-supported cooperative work. J Biomed Inform. 2004;37(2): 128-137.
    • (2004) J Biomed Inform , vol.37 , Issue.2 , pp. 128-137
    • Pratt, W.1    Reddy, M.C.2    McDonald, D.W.3
  • 11
    • 70350051476 scopus 로고    scopus 로고
    • The impact of patients' participation on physicians' patient-centered communication
    • Cegala DJ, Post DM. The impact of patients' participation on physicians' patient-centered communication. Patient Educ Couns. 2009;77(2):202-208.
    • (2009) Patient Educ Couns , vol.77 , Issue.2 , pp. 202-208
    • Cegala, D.J.1    Post, D.M.2
  • 12
    • 0028998128 scopus 로고
    • Effective physician-patient communication and health outcomes: a review
    • Stewart MA. Effective physician-patient communication and health outcomes: a review. CMAJ. 1995;152(9):1423-1433.
    • (1995) CMAJ , vol.152 , Issue.9 , pp. 1423-1433
    • Stewart, M.A.1
  • 13
    • 0037824761 scopus 로고    scopus 로고
    • Interacting with cancer patients: the significance of physicians' communication behavior
    • Arora NK. Interacting with cancer patients: the significance of physicians' communication behavior. Soc Sci Med. 2003;57(5):791-806.
    • (2003) Soc Sci Med , vol.57 , Issue.5 , pp. 791-806
    • Arora, N.K.1
  • 14
    • 77953846207 scopus 로고    scopus 로고
    • Health information technology to facilitate communication involving health care providers, caregivers, and pediatric patients: a scoping review
    • Gentles SJ, Lokker C, McKibbon KA. Health information technology to facilitate communication involving health care providers, caregivers, and pediatric patients: a scoping review. J Med Internet Res. 2010;12(2):e22.
    • (2010) J Med Internet Res , vol.12 , Issue.2
    • Gentles, S.J.1    Lokker, C.2    McKibbon, K.A.3
  • 16
    • 0034309873 scopus 로고    scopus 로고
    • Patient-centredness: a conceptual framework and review of the empirical literature
    • Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med. 2000;51(7):1087-1110.
    • (2000) Soc Sci Med , vol.51 , Issue.7 , pp. 1087-1110
    • Mead, N.1    Bower, P.2
  • 17
    • 84880641048 scopus 로고    scopus 로고
    • When seeing the same physician, highly activated patients have better care experiences than less activated patients
    • Greene J, Hibbard JH, Sacks R, et al. When seeing the same physician, highly activated patients have better care experiences than less activated patients. Health Aff. 2013;32(7):1299-1305.
    • (2013) Health Aff , vol.32 , Issue.7 , pp. 1299-1305
    • Greene, J.1    Hibbard, J.H.2    Sacks, R.3
  • 18
    • 33646119401 scopus 로고    scopus 로고
    • Hematopoietic stem-cell transplantation
    • Copelan EA. Hematopoietic stem-cell transplantation. N Engl J Med. 2006;354(17):1813-1826.
    • (2006) N Engl J Med , vol.354 , Issue.17 , pp. 1813-1826
    • Copelan, E.A.1
  • 21
    • 80255140506 scopus 로고    scopus 로고
    • Informal caregivers of hematopoietic cell transplant patients: a review and recommendations for interventions and research
    • Gemmill R, Cooke L, Williams AC, et al. Informal caregivers of hematopoietic cell transplant patients: a review and recommendations for interventions and research. Cancer Nurs. 2011;34(6):E13-E21.
    • (2011) Cancer Nurs , vol.34 , Issue.6 , pp. E13-E21
    • Gemmill, R.1    Cooke, L.2    Williams, A.C.3
  • 22
    • 3543119613 scopus 로고    scopus 로고
    • Patterns of distress in parents of children undergoing stem cell transplantation
    • Phipps S, Dunavant M, Lensing S, et al. Patterns of distress in parents of children undergoing stem cell transplantation. Pediatric Blood Cancer. 2004;43(3):267-274.
    • (2004) Pediatric Blood Cancer , vol.43 , Issue.3 , pp. 267-274
    • Phipps, S.1    Dunavant, M.2    Lensing, S.3
  • 23
    • 84883793886 scopus 로고    scopus 로고
    • Nursing's contribution to research about parenting children with complex chronic conditions: an integrative review, 2002 to 2012
    • Rehm RS. Nursing's contribution to research about parenting children with complex chronic conditions: an integrative review, 2002 to 2012. Nurs Outlook. 2013;61(5):266-290.
    • (2013) Nurs Outlook , vol.61 , Issue.5 , pp. 266-290
    • Rehm, R.S.1
  • 24
    • 34347394935 scopus 로고    scopus 로고
    • Do increases in patient activation result in improved self-management behaviors?
    • Hibbard JH, Mahoney ER, Stock R, et al. Do increases in patient activation result in improved self-management behaviors? Health Serv Res. 2007;42(4):1443-1463.
    • (2007) Health Serv Res , vol.42 , Issue.4 , pp. 1443-1463
    • Hibbard, J.H.1    Mahoney, E.R.2    Stock, R.3
  • 25
    • 84908024094 scopus 로고    scopus 로고
    • Adoption of Electronic Health Record Systems among U.S. Non-federal Acute Care Hospitals: 2008-2013
    • May. [cited April 27, 2015]
    • Charles D, Gabriel M, Furukawa MF. Adoption of Electronic Health Record Systems among U.S. Non-federal Acute Care Hospitals: 2008-2013. ONC Data Brief; No 16; May 2014. [cited April 27, 2015]. http://www.healthit.gov/sites/default/files/oncdatabrief16.pdf.
    • (2014) ONC Data Brief , Issue.16
    • Charles, D.1    Gabriel, M.2    Furukawa, M.F.3
  • 26
    • 84862118952 scopus 로고    scopus 로고
    • Bedside information technology to support patient-centered care
    • Caligtan CA, Carroll DL, Hurley AC, et al. Bedside information technology to support patient-centered care. Int J Med Inform. 2012;81(7):442-451.
    • (2012) Int J Med Inform , vol.81 , Issue.7 , pp. 442-451
    • Caligtan, C.A.1    Carroll, D.L.2    Hurley, A.C.3
  • 27
    • 84874469061 scopus 로고    scopus 로고
    • Building and testing a patient-centric electronic bedside communication center
    • Dykes PC, Carroll DL, Hurley AC, et al. Building and testing a patient-centric electronic bedside communication center. J Gerontol Nurs. 2013;39(1): 15-19.
    • (2013) J Gerontol Nurs , vol.39 , Issue.1 , pp. 15-19
    • Dykes, P.C.1    Carroll, D.L.2    Hurley, A.C.3
  • 28
    • 84964314561 scopus 로고    scopus 로고
    • Participatory design and development of a patient-centered toolkit to engage hospitalized patients and care partners in their plan of care
    • Dykes PC, Stade D, Chang F, et al. Participatory design and development of a patient-centered toolkit to engage hospitalized patients and care partners in their plan of care. AMIA Annu Symp Proc. 2014;2014:486-495.
    • (2014) AMIA Annu Symp Proc , vol.2014 , pp. 486-495
    • Dykes, P.C.1    Stade, D.2    Chang, F.3
  • 29
    • 84885182866 scopus 로고    scopus 로고
    • Dear doctor: a tool to facilitate patientcentered communication
    • Farberg AS, Lin AM, Kuhn L, et al. Dear doctor: a tool to facilitate patientcentered communication. J Hosp Med. 2013;8(10):553-558.
    • (2013) J Hosp Med , vol.8 , Issue.10 , pp. 553-558
    • Farberg, A.S.1    Lin, A.M.2    Kuhn, L.3
  • 31
    • 85066473670 scopus 로고    scopus 로고
    • Co-Creation with TickiT: designing and evaluating a clinical eHealth Platform for Youth
    • Whitehouse SR, Lam PY, Balka E, et al. Co-Creation with TickiT: designing and evaluating a clinical eHealth Platform for Youth. JMIR Res Protocols. 2013;2(2):e42.
    • (2013) JMIR Res Protocols , vol.2 , Issue.2
    • Whitehouse, S.R.1    Lam, P.Y.2    Balka, E.3
  • 32
    • 0033669426 scopus 로고    scopus 로고
    • Baby CareLink: using the internet and telemedicine to improve care for high-risk infants
    • Gray JE, Safran C, Davis RB, et al. Baby CareLink: using the internet and telemedicine to improve care for high-risk infants. Pediatrics. 2000;106(6):1318-1324.
    • (2000) Pediatrics , vol.106 , Issue.6 , pp. 1318-1324
    • Gray, J.E.1    Safran, C.2    Davis, R.B.3
  • 34
    • 84958563618 scopus 로고    scopus 로고
    • Transition and reflection in the use of health information: the case of pediatric bone marrow transplant caregivers
    • Vancouver, British Columbia, Canada; March 14-18
    • Kaziunas E, Buyuktur A, Jones J, et al. Transition and reflection in the use of health information: the case of pediatric bone marrow transplant caregivers. Proceedings of the ACM 2015 Conference on Computer Supported Cooperative Work (CSCW '15). Vancouver, British Columbia, Canada; March 14-18, 2015.
    • (2015) Proceedings of the ACM 2015 Conference on Computer Supported Cooperative Work (CSCW '15)
    • Kaziunas, E.1    Buyuktur, A.2    Jones, J.3
  • 35
    • 84912529225 scopus 로고    scopus 로고
    • Participation in clinical research: perspectives of adult patients and parents of pediatric patients undergoing hematopoietic stem cell transplantation
    • Keusch F, Rao R, Chang L, et al. Participation in clinical research: perspectives of adult patients and parents of pediatric patients undergoing hematopoietic stem cell transplantation. Biol Blood Marrow Transplant. 2014;20(10):1604-1611.
    • (2014) Biol Blood Marrow Transplant , vol.20 , Issue.10 , pp. 1604-1611
    • Keusch, F.1    Rao, R.2    Chang, L.3
  • 36
    • 84929028531 scopus 로고    scopus 로고
    • Issues and opportunities in transitions from speciality care: a field study of bone marrow transplant
    • Büyüktür AG, Ackerman MS. Issues and opportunities in transitions from speciality care: a field study of bone marrow transplant. Behav Inform Technol. 2014;34(6):1-19.
    • (2014) Behav Inform Technol , vol.34 , Issue.6 , pp. 1-19
    • Büyüktür, A.G.1    Ackerman, M.S.2
  • 37
    • 84974872728 scopus 로고
    • Interpretive case studies in IS research: nature and method
    • Walsham G. Interpretive case studies in IS research: nature and method. Eur J Inform Syst. 1995;4(2):74-81.
    • (1995) Eur J Inform Syst , vol.4 , Issue.2 , pp. 74-81
    • Walsham, G.1
  • 38
    • 73549100231 scopus 로고
    • The emergence of interpretivism in IS research
    • Walsham G. The emergence of interpretivism in IS research. Inform Syst Res. 1995;6(4):376-394.
    • (1995) Inform Syst Res , vol.6 , Issue.4 , pp. 376-394
    • Walsham, G.1
  • 39
    • 25444531521 scopus 로고    scopus 로고
    • The search for social safety and comfort in families raising children with complex chronic conditions
    • Rehm RS, Bradley JF. The search for social safety and comfort in families raising children with complex chronic conditions. J Fam Nurs. 2005;11(1):59-78.
    • (2005) J Fam Nurs , vol.11 , Issue.1 , pp. 59-78
    • Rehm, R.S.1    Bradley, J.F.2
  • 40
    • 0033112590 scopus 로고    scopus 로고
    • An exploratory study of patients' perceptions, memories and experiences of an intensive care unit
    • Russell S. An exploratory study of patients' perceptions, memories and experiences of an intensive care unit. J Adv Nurs. 1999;29(4):783-791.
    • (1999) J Adv Nurs , vol.29 , Issue.4 , pp. 783-791
    • Russell, S.1
  • 41
    • 36748999868 scopus 로고    scopus 로고
    • Early experiences with personal health records
    • Halamka JD, Mandl KD, Tang PC. Early experiences with personal health records. JAMIA. 2008;15(1):1-7.
    • (2008) JAMIA , vol.15 , Issue.1 , pp. 1-7
    • Halamka, J.D.1    Mandl, K.D.2    Tang, P.C.3
  • 42
    • 84912075517 scopus 로고    scopus 로고
    • Family participation during intensive care unit rounds: goals and expectations of parents and health care providers in a tertiary pediatric intensive care unit
    • Stickney CA, Ziniel SI, Brett MS, et al. Family participation during intensive care unit rounds: goals and expectations of parents and health care providers in a tertiary pediatric intensive care unit. J Pediatr. 2014;165(6):1245-1251 e1.
    • (2014) J Pediatr , vol.165 , Issue.6 , pp. 1245-1251
    • Stickney, C.A.1    Ziniel, S.I.2    Brett, M.S.3
  • 43
    • 84930820815 scopus 로고    scopus 로고
    • An interactive evaluation of patient/family centered rounds on pediatric inpatient units
    • Palokas JM, Northington L, Wilkerson RR, et al. An interactive evaluation of patient/family centered rounds on pediatric inpatient units. J Pediatric Nursing. 2014;30(4):e9-e15.
    • (2014) J Pediatric Nursing , vol.30 , Issue.4 , pp. e9-e15
    • Palokas, J.M.1    Northington, L.2    Wilkerson, R.R.3
  • 44
    • 84907500077 scopus 로고    scopus 로고
    • Numeracy and literacy independently predict patients' ability to identify out-of-range test results
    • Zikmund-Fisher BJ, Exe NL, Witteman HO. Numeracy and literacy independently predict patients' ability to identify out-of-range test results. J Med Internet Res. 2014;16(8):e187.
    • (2014) J Med Internet Res , vol.16 , Issue.8
    • Zikmund-Fisher, B.J.1    Exe, N.L.2    Witteman, H.O.3
  • 45
    • 84875374457 scopus 로고    scopus 로고
    • Information-seeking behaviours and decision-making process of parents of children with cancer
    • Kilicarslan-Toruner E, Akgun-Citak E. Information-seeking behaviours and decision-making process of parents of children with cancer. Eur J Oncol Nurs. 2013;17(2):176-183.
    • (2013) Eur J Oncol Nurs , vol.17 , Issue.2 , pp. 176-183
    • Kilicarslan-Toruner, E.1    Akgun-Citak, E.2
  • 46
    • 0028881924 scopus 로고
    • Parental perceptions and attitudes about informed consent in clinical research involving children
    • Harth SC, Thong YH. Parental perceptions and attitudes about informed consent in clinical research involving children. Soc Sci Med. 1995;41(12): 1647-1651.
    • (1995) Soc Sci Med , vol.41 , Issue.12 , pp. 1647-1651
    • Harth, S.C.1    Thong, Y.H.2
  • 47
    • 0035944839 scopus 로고    scopus 로고
    • Quality of informed consent in cancer clinical trials: a cross-sectional survey
    • Joffe S, Cook EF, Cleary PD, et al. Quality of informed consent in cancer clinical trials: a cross-sectional survey. Lancet. 2001;358(9295): 1772-1777.
    • (2001) Lancet , vol.358 , Issue.9295 , pp. 1772-1777
    • Joffe, S.1    Cook, E.F.2    Cleary, P.D.3
  • 48
    • 84963757412 scopus 로고    scopus 로고
    • Assessing the readability of ClinicalTrials.gov
    • (In Press)
    • Wu DT, Hanauer DA, Mei Q, et al. Assessing the readability of ClinicalTrials.gov. JAMIA. 2015;(In Press).
    • (2015) JAMIA
    • Wu, D.T.1    Hanauer, D.A.2    Mei, Q.3
  • 50
    • 0034181616 scopus 로고    scopus 로고
    • Managing post-discharge care at home: an analysis of patients' and their carers' perceptions of information received during their stay in hospital
    • Driscoll A. Managing post-discharge care at home: an analysis of patients' and their carers' perceptions of information received during their stay in hospital. J Adv Nurs. 2000;31(5):1165-1173.
    • (2000) J Adv Nurs , vol.31 , Issue.5 , pp. 1165-1173
    • Driscoll, A.1
  • 51
    • 32344438429 scopus 로고    scopus 로고
    • Discharge and unscheduled readmissions of adult patients undergoing hematopoietic stem cell transplantation: implications for developing nursing interventions
    • Grant M, Cooke L, Bhatia S, et al. Discharge and unscheduled readmissions of adult patients undergoing hematopoietic stem cell transplantation: implications for developing nursing interventions. Oncol Nurs Forum. 2005;32(1):E1-E8.
    • (2005) Oncol Nurs Forum , vol.32 , Issue.1 , pp. E1-E8
    • Grant, M.1    Cooke, L.2    Bhatia, S.3
  • 52
    • 35649018221 scopus 로고    scopus 로고
    • Promoting effective transitions of care at hospital discharge: a review of key issues for hospitalists
    • Kripalani S, Jackson AT, Schnipper JL, et al. Promoting effective transitions of care at hospital discharge: a review of key issues for hospitalists. J Hosp Med. 2007;2(5):314-323.
    • (2007) J Hosp Med , vol.2 , Issue.5 , pp. 314-323
    • Kripalani, S.1    Jackson, A.T.2    Schnipper, J.L.3
  • 53
    • 79961030084 scopus 로고    scopus 로고
    • Parents' views on information in childhood cancer care
    • Kastel A, Enskar K, Bjork O. Parents' views on information in childhood cancer care. Eur J Oncol Nursing. 2011;15(4):290-295.
    • (2011) Eur J Oncol Nursing , vol.15 , Issue.4 , pp. 290-295
    • Kastel, A.1    Enskar, K.2    Bjork, O.3
  • 54
    • 84880512750 scopus 로고    scopus 로고
    • OpenNotes: hospitalists' challenge and opportunity
    • Feldman HJ, Walker J, Li J, et al. OpenNotes: hospitalists' challenge and opportunity. J Hosp Med. 2013;8(7):414-417.
    • (2013) J Hosp Med , vol.8 , Issue.7 , pp. 414-417
    • Feldman, H.J.1    Walker, J.2    Li, J.3
  • 55
    • 84959490077 scopus 로고    scopus 로고
    • Findings and Lessons from the Improving Management of Individuals with Complex HealthCare Needs Through Health IT Grant Initiative. Prepared by Westat Under Contract No. HHSA 290200900023I. Prepared for Agency for Healthcare Reasearch and Quality. AHRQ Publication No. 13-0058-EF. Rockville, MD: Agency for Healthcare Research and Quality. September. [cited April 27, 2015]
    • Westat. Findings and Lessons from the Improving Management of Individuals with Complex HealthCare Needs Through Health IT Grant Initiative. Prepared by Westat Under Contract No. HHSA 290200900023I. Prepared for Agency for Healthcare Reasearch and Quality. AHRQ Publication No. 13-0058-EF. Rockville, MD: Agency for Healthcare Research and Quality. September 2013. [cited April 27, 2015]. http://healthit.ahrq.gov/sites/default/files/docs/page/findings-and-lessons-fromimproving-management-of-individuals-with-complex-health-care-needsthrough-health-it-grant-initiative.pdf.
    • (2013)


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