Patient. 2021 Jun 25; doi: 10.1007/s40271-021-00535-x. Epub 2021 Jun 25.
Dealing with Discontinuity in Cancer Care Trajectories: Patients' Solutions.
The patient
Debbie Vermond, Souad El Habhoubi, Esther de Groot, Larike Bronkhorst, Niek de Wit, Dorien Zwart
Affiliations
Affiliations
- Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, P.O. Box 85500, 3508 GA, Utrecht, The Netherlands. [email protected].
- Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, P.O. Box 85500, 3508 GA, Utrecht, The Netherlands.
- Faculty of Social and Behavioural Sciences, Department of Education, Utrecht University, Utrecht, The Netherlands.
PMID: 34169481
DOI: 10.1007/s40271-021-00535-x
Abstract
INTRODUCTION: Patients with cancer require specialized care from different care providers, challenging continuity of care in terms of information, relationships, and/or management. The recognition of discontinuity of care has led to different initiatives by the healthcare system over the years. Yet, making use of the theory on boundary objects and brokers, this research explores the active role of patients themselves in resolving discontinuity along their care trajectories.
METHODS: Semi-structured interviews were conducted with 33 patients to unravel the discontinuities that they experience and their attempts to resolve these. Interview data were analyzed using directed-content analysis informed by concepts from boundary crossing literature (i.e., data were searched for potential boundary objects and brokers).
RESULTS: To re-establish continuity of care, patients actively use the objects and people provided by the healthcare system when these meet their needs. Patients also introduce own objects and people into the care trajectory. As such, information and management discontinuity can typically be resolved. Relational continuity appears to be more difficult to resolve, in some cases leaving patients to take drastic measures, such as changing care providers.
DISCUSSION: The use of boundary crossing theory in improving care from a patient perspective is relatively novel. When patients and providers together address the objects and people that support establishing continuity of care, a continuous care process may be encouraged. We advocate an integrated approach, rather than provider or healthcare system initiatives exclusively, to patient care and continuity.
References
- Van Achterberg T, Stevens FCJ, Crebolder HFJM, De Witte LP, Philipsen H. Coordination of care: effects on the continuity and quality of care. Int J Nurs Stud. 1996;33(6):638–50. https://doi.org/10.1016/S0020-7489(96)00021-1 . - PubMed
- Stange KC. The problem of fragmentation and the need for integrative solutions. Ann Fam Med. 2009;7(2):100. https://doi.org/10.1370/afm.971 . - PubMed
- Waibel S, Henao D, Aller MB, Vargas I, Vazquez ML. What do we know about patients’ perceptions of continuity of care? A meta-synthesis of qualitative studies. Int J Qual Health Care. 2012;24(1):39–48. https://doi.org/10.1093/intqhc/mzr068 . - PubMed
- Guthrie B, Saultz JW, Freeman GK, Haggerty JL. Continuity of care matters. BMJ. 2008;337: a867. https://doi.org/10.1136/bmj.a867 . - PubMed
- Reid R, Haggerty J, McKendry R. Defusing the confusion: concepts and measures of continuity of health care. Vancouver, B.C.: Centre for Health Services and Policy Research, University of British Columbia; 2002. - PubMed
- Philipsen H, Stevens FCJ. Modernization, rationality and continuity of care: theoretical concepts and empirical findings. Sociol Focus. 1997;30(2):189–204. https://doi.org/10.1080/00380237.1997.10570691 . - PubMed
- Jackson J, MacKean G, Cooke T, Lahtinen M. Patient and provider experiences with relationship, information, and management continuity. Patient Exp J. 2017;4(3):10. https://doi.org/10.35680/2372-0247.1192 . - PubMed
- van Servellen G, Fongwa M, Mockus DE. Continuity of care and quality care outcomes for people experiencing chronic conditions: a literature review. Nurs Health Sci. 2006;8(3):185–95. https://doi.org/10.1111/j.1442-2018.2006.00278.x . - PubMed
- van Walraven C, Oake N, Jennings A, Forster AJ. The association between continuity of care and outcomes: a systematic and critical review. J Eval Clin Pract. 2010;16(5):947–56. https://doi.org/10.1111/j.1365-2753.2009.01235.x . - PubMed
- Haggerty JL, Roberge D, Freeman GK, Beaulieu C. Experienced continuity of care when patients see multiple clinicians: a qualitative metasummary. Ann Fam Med. 2013;11(3):262–71. https://doi.org/10.1370/afm.1499 . - PubMed
- Moore C, Wisnivesky J, Williams S, McGinn T. Medical errors related to discontinuity of care from an inpatient to an outpatient setting. J Gen Intern Med. 2003;18(8):646–51. https://doi.org/10.1046/j.1525-1497.2003.20722.x . - PubMed
- Kislov R. Selective permeability of boundaries in a knowledge brokering team. Public Admin. 2018;96(4):817–36. https://doi.org/10.1111/padm.12541 . - PubMed
- Greig G, Entwistle VA, Beech N. Addressing complex healthcare problems in diverse settings: insights from activity theory. Soc Sci Med. 2012;74(3):305–12. https://doi.org/10.1016/j.socscimed.2011.02.006 . - PubMed
- Engestrom Y, Sannino A. Studies of expansive learning: foundations, findings and future challenges. Educ Res Rev. 2010;5(1):1–24. https://doi.org/10.1016/j.edurev.2009.12.002 . - PubMed
- O’Leary N, Boland P. Organization and system theories in interprofessional research: a scoping review. J Interprof Care. 2020;34(1):11–9. https://doi.org/10.1080/13561820.2019.1632815 . - PubMed
- Engeström Y. Expansive learning at work: toward an activity theoretical reconceptualization. J Educ Work. 2001;14:133–56. https://doi.org/10.1080/13639080020028747 . - PubMed
- Akkerman SF, Bakker A. Boundary crossing and boundary objects. Rev Educ Res. 2011;81(2):132–69. https://doi.org/10.3102/0034654311404435 . - PubMed
- Akkerman S, Bakker A. Learning at the boundary: an introduction. Int J Educ Res. 2011;50:1–5. https://doi.org/10.1016/j.ijer.2011.04.002 . - PubMed
- O’Keefe M, Ward H. Implementing interprofessional learning curriculum: how problems might also be answers. BMC Med Educ. 2018;18(1):132. https://doi.org/10.1186/s12909-018-1231-1 . - PubMed
- Walters AH, Oyebode JR, Riley GA. The dynamics of continuity and discontinuity for women caring for a spouse with dementia. Dementia. 2010;9(2):169–89. https://doi.org/10.1177/1471301209354027 . - PubMed
- Engeström Y, Engeström R, Kärkkäinen M. Polycontextuality and boundary crossing in expert cognition: learning and problem solving in complex work activities. Learn Instr. 1995;5(4):319–36. https://doi.org/10.1016/0959-4752(95)00021-6 . - PubMed
- Star SL, Griesemer JR. Institutional ecology, “translations” and boundary objects: Amateurs and professionals in Berkeley’s Museum of Vertebrate Zoology, 1907–1939. Soc Stud Sci. 1989;19(3):387–420. https://doi.org/10.1177/030631289019003001 . - PubMed
- Fujimura J. Crafting science: standardized packages, boundary objects, and “Translation.” In: Pickering A editor. Science as practice and culture. University of Chicago Press; 1992. p. 168–211. - PubMed
- Håland E, Røsstad T, Osmundsen TC. Care pathways as boundary objects between primary and secondary care: experiences from Norwegian home care services. Health. 2015;19(6):635–51. https://doi.org/10.1177/1363459314567789 . - PubMed
- Carlile PR. A pragmatic view of knowledge and boundaries: boundary objects in new product development. Organ Sci. 2002;13(4):442–55. https://doi.org/10.1287/orsc.13.4.442.2953 . - PubMed
- Sapsed J, Salter A. Postcards from the edge: local communities, global programs and boundary objects. Organ Stud. 2004;25(9):1515–34. https://doi.org/10.1177/0170840604047998 . - PubMed
- Bronkhorst LH, Akkerman SF. At the boundary of school: continuity and discontinuity in learning across contexts. Educ Res Rev. 2016;19:18–35. https://doi.org/10.1016/j.edurev.2016.04.001 . - PubMed
- Trompette P, Vinck D. Revisiting the notion of boundary object. Revue d’anthropologie des connaissances. 2009;3(1):3–25. https://doi.org/10.3917/rac.006.0003 . - PubMed
- Star SL. This is not a boundary object: reflections on the origin of a concept. Sci Technol Human Values. 2010;35(5):601–17. - PubMed
- Wenger E. Communities of practice: learning, meaning and identity. Cambridge: Cambridge University Press; 1998. - PubMed
- Kimble C, Grenier C, Goglio-Primard K. Innovation and knowledge sharing across professional boundaries: political interplay between boundary objects and brokers. Int J Inf Manag. 2010. https://doi.org/10.1016/j.ijinfomgt.2010.02.002 . - PubMed
- Carlile P. Transferring, translating, and transforming: an integrative framework for managing knowledge across boundaries. Organ Sci. 2004;15:555–68. https://doi.org/10.1287/orsc.1040.0094 . - PubMed
- Bishop S, Waring J. From boundary object to boundary subject; the role of the patient in coordination across complex systems of care during hospital discharge. Soc Sci Med. 2019. https://doi.org/10.1016/j.socscimed.2019.112370 . - PubMed
- Fox NJ. Boundary objects, social meanings and the success of new technologies. Sociology. 2011;45(1):70–85. https://doi.org/10.1177/0038038510387196 . - PubMed
- Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88. https://doi.org/10.1177/1049732305276687 . - PubMed
- Varpio L, Ajjawi R, Monrouxe LV, O’Brien BC, Rees CE. Shedding the cobra effect: problematising thematic emergence, triangulation, saturation and member checking. Med Educ. 2017;51(1):40–50. https://doi.org/10.1111/medu.13124 . - PubMed
- Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57. https://doi.org/10.1093/intqhc/mzm042 . - PubMed
- Bailo L, Guiddi P, Vergani L, Marton G, Pravettoni G. The patient perspective: investigating patient empowerment enablers and barriers within the oncological care process. Ecancermedicalscience. 2019;13:912. https://doi.org/10.3332/ecancer.2019.912 . - PubMed
- Prip A, Moller KA, Nielsen DL, Jarden M, Olsen MH, Danielsen AK. The patient-healthcare professional relationship and communication in the oncology outpatient setting: a systematic review. Cancer Nurs. 2018;41(5):E11–22. https://doi.org/10.1097/NCC.0000000000000533 . - PubMed
- McCaffrey SA, Chiauzzi E, Chan C, Hoole M. Understanding ‘Good Health care’ from the patient’s perspective: development of a conceptual model using group concept mapping. Patient. 2019;12(1):83–95. https://doi.org/10.1007/s40271-018-0320-x . - PubMed
- Weiner SJ, Schwartz A, Sharma G, Binns-Calvey A, Ashley N, Kelly B, et al. Patient-centered decision making and health care outcomes an observational study. Ann Intern Med. 2013;158(8):573. https://doi.org/10.7326/0003-4819-158-8-201304160-00001 . - PubMed
- Busch IM, Moretti F, Travaini G, Wu AW, Rimondini M. Humanization of care: key elements identified by patients, caregivers, and healthcare providers. A systematic review. Patient. 2019;12(5):461–74. https://doi.org/10.1007/s40271-019-00370-1 . - PubMed
- Berger R, Bulmash B, Drori N, Ben-Assuli O, Herstein R. The patient–physician relationship: an account of the physician’s perspective. Israel J Health Policy Res. 2020;9(1):33. https://doi.org/10.1186/s13584-020-00375-4 . - PubMed
- Garman AN, Johnson TJ, Lynch EB, Satjapot S. Care provider perspectives on medical travel: a three-country study of destination hospitals. Health Mark Q. 2016;33(1):48–58. https://doi.org/10.1080/07359683.2016.1131579 . - PubMed
- Scott JG, Cohen D, Dicicco-Bloom B, Miller WL, Stange KC, Crabtree BF. Understanding healing relationships in primary care. Ann Fam Med. 2008;6(4):315–22. https://doi.org/10.1370/afm.860 . - PubMed
- Dudzinski DM, Alvarez C. Repairing, “Difficult” patient-clinician relationships. AMA J Ethics. 2017;19(4):364–8. https://doi.org/10.1001/journalofethics.2017.19.4.medu3-1704 . - PubMed
- Gleason KT, Han H-R. Patient feedback on research studies: how to interpret feedback from the ‘Aware’ patient? Patient. 2021;14(1):147–8. https://doi.org/10.1007/s40271-020-00469-w . - PubMed
- Reid A-M, Ledger A, Kilminster S, Fuller R. Can the tools of activity theory help us in advancing understanding and organisational change in undergraduate medical education? Adv Health Sci Educ Theory Pract. 2014. https://doi.org/10.1007/s10459-014-9553-1 . - PubMed
- Ellaway R. Virtual patients as activities: exploring the research implications of an activity theoretical stance. Perspect Med Educ. 2014. https://doi.org/10.1007/s40037-014-0134-z . - PubMed
- Shields GE, Brown L, Wells A, Capobianco L, Vass C. Utilising patient and public involvement in stated preference research in health: learning from the existing literature and a case study. Patient. 2020. https://doi.org/10.1007/s40271-020-00439-2 . - PubMed
- Thompson AG. The meaning of patient involvement and participation in health care consultations: a taxonomy. Soc Sci Med. 2007;64(6):1297–310. https://doi.org/10.1016/j.socscimed.2006.11.002 . - PubMed
- Vahdat S, Hamzehgardeshi L, Hessam S, Hamzehgardeshi Z. Patient involvement in health care decision making: a review. Iran Red Crescent Med J. 2014;16(1): e12454. https://doi.org/10.5812/ircmj.12454 . - PubMed
- Aujoulat I, d’Hoore W, Deccache A. Patient empowerment in theory and practice: polysemy or cacophony? Patient Educ Couns. 2007;66(1):13–20. https://doi.org/10.1016/j.pec.2006.09.008 . - PubMed
- Wakefield D, Bayly J, Selman LE, Firth AM, Higginson IJ, Murtagh FE. Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: a systematic review using critical interpretive synthesis. Palliat Med. 2018;32(8):1288–304. https://doi.org/10.1177/0269216318783919 . - PubMed
- Bate P, Robert G. Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Qual Saf Health Care. 2006;15(5):307–10. https://doi.org/10.1136/qshc.2005.016527 . - PubMed
- Giardina TD, Haskell H, Menon S, Hallisy J, Southwick FS, Sarkar U, et al. Learning from patients’ experiences related to diagnostic errors is essential for progress in patient safety. Health Affair. 2018;37(11):1821–7. https://doi.org/10.1377/hlthaff.2018.0698 . - PubMed
- Pitts PJ. Our most powerful weapon to fight COVID-19: patient involvement. Patient. 2020;13(3):255. https://doi.org/10.1007/s40271-020-00421-y . - PubMed
- Pitts PJ. Towards meaningful engagement for the patient voice. Patient. 2019;12(4):361–3. https://doi.org/10.1007/s40271-019-00366-x . - PubMed
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