Now What? Collective Sensemaking and Sensegiving in the Cystic Fibrosis Community in Sweden During the Initial Phase of the COVID-19 Pandemic

References

• Abebe, E., Scanlon, M. C., Lee, K. J., & Chui, M. A. (2020). What do family caregivers do when managing medications for their children with medical complexity? Applied Ergonomics, 87, 103108. https://doi.org/10.1016/j.apergo.2020.103108
   PubMed Web of Science ®Google Scholar
• Angeli, F., & Montefusco, A. (2020). Sensemaking and learning during the Covid-19 pandemic: A complex adaptive systems perspective on policy decision-making. World Development, 136, 105106. https://doi.org/10.1016/j.worlddev.2020.105106
   PubMed Web of Science ®Google Scholar
• Bietti, L. M., Tilston, O., & Bangerter, A. (2019). Storytelling as adaptive collective sensemaking. Topics in Cognitive Science, 11(4), 710–732. https://doi.org/10.1111/TOPS.12358
   PubMed Web of Science ®Google Scholar
• Bloem, B. R., Dorsey, E. R., & Okun, M. S. (2020). The coronavirus disease 2019 crisis as catalyst for telemedicine for chronic neurological disorders. JAMA Neurology, 77(8), 927–928. https://doi.org/10.1001/jamaneurol.2020.1452
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
   Web of Science ®Google Scholar
• Chater, N. (2020). Facing up to the uncertainties of COVID-19. Nature Human Behaviour, 4(5), 439. https://doi.org/10.1038/s41562-020-0865-2
   PubMed Web of Science ®Google Scholar
• Christianson, M. K., & Barton, M. A. (2021). Sensemaking in the time of COVID‐19. Journal of Management Studies, 58(2), 572–576. https://doi.org/10.1111/joms.12658
   Web of Science ®Google Scholar
• Claeson, M., & Hanson, S. (2021). COVID-19 and the Swedish enigma. The Lancet, 397(10271), 259–261. https://doi.org/10.1016/S0140-6736(20)32750-1
   PubMed Web of Science ®Google Scholar
• Coburn, C. E. (2001). Collective sensemaking about reading: How teachers mediate reading policy in their professional communities. Educational Evaluation and Policy Analysis, 23(2), 145–170. https://doi.org/10.3102/01623737023002145
   Web of Science ®Google Scholar
• Crandall, B., Klein, G., & Hoffman, R. (2006). Working minds: A practitioner’s guide to cognitive task analysis. MIT Press.
   Google Scholar
• Danhieux, K., Buffel, V., Pairon, A., Benkheil, A., Remmen, R., Wouters, E., & van Olmen, J. (2020). The impact of COVID-19 on chronic care according to providers: A qualitative study among primary care practices in Belgium. BMC Family Practice, 21(1), 255. https://doi.org/10.1186/s12875-020-01326-3
   PubMed Web of Science ®Google Scholar
• Dhukaram, A. V., & Baber, C. (2015). Modelling elderly cardiac patients decision making using cognitive work analysis: Identifying requirements for patient decision aids. International Journal of Medical Informatics, 84(6), 430–443. https://doi.org/10.1016/j.ijmedinf.2015.01.001
   PubMed Web of Science ®Google Scholar
• Elborn, J. S. (2016). Cystic fibrosis. The Lancet, 388(10059), 2519–2531. https://doi.org/10.1016/S0140-6736(16)00576-6
   PubMed Web of Science ®Google Scholar
• Farooqi, A. T., Snoek, F. J., & Khunti, K. (2021). Management of chronic cardiometabolic conditions and mental health during COVID-19. Primary Care Diabetes, 15(1), 21–23. https://doi.org/10.1016/j.pcd.2020.08.016
   PubMed Web of Science ®Google Scholar
• Gilstrap, C. M. (2021). Organizational sensegiving in family-centered care: How NICU nurses help families make sense of the NICU experience. Health Communication, 36(13), 1623–1633. https://doi.org/10.1080/10410236.2020.1785373
   PubMed Web of Science ®Google Scholar
• Gioia, D. A., & Chittipeddi, K. (1991). Sensemaking and sensegiving in strategic change initiation. Strategic Management Journal, 12(6), 433–448. https://doi.org/10.1002/smj.4250120604
   Web of Science ®Google Scholar
• Guttman, N., & Lev, E. (2021). Ethical issues in COVID-19 communication to mitigate the pandemic: Dilemmas and practical implications. Health Communication, 36(1), 116–123. https://doi.org/10.1080/10410236.2020.1847439
   PubMed Web of Science ®Google Scholar
• Hager, A., Lindblad, S., Brommels, M., Salomonsson, S., & Wannheden, C. (2021). Sharing patient-controlled real-world data through the application of the theory of commons: Action research case study. Journal of Medical Internet Research, 23(1), e16842. https://doi.org/10.2196/16842
   PubMed Web of Science ®Google Scholar
• Häyry, M. (2021). The COVID-19 pandemic: Healthcare crisis leadership as ethics communication. Cambridge Quarterly of Healthcare Ethics, 30(1), 42–50. https://doi.org/10.1017/S0963180120000444
   PubMed Web of Science ®Google Scholar
• Holden, R. J., Daley, C. N., Mickelson, R. S., Bolchini, D., Toscos, T., Cornet, V. P., Miller, A., & Mirro, M. J. (2020). Patient decision-making personas: An application of a patient-centered cognitive task analysis (P-CTA). Applied Ergonomics, 87, 103107. https://doi.org/10.1016/j.apergo.2020.103107
   PubMed Web of Science ®Google Scholar
• Huzzard, T., Hellström, A., & Lifvergren, S. (2014). System-wide change in cancer care: Exploring sensemaking, sensegiving, and consent. In A. B. Shani & D. A. Noumair (Eds.), Research in organizational change and development (Vol. 22, pp. 191–218). Emerald Group Publishing Limited. https://doi.org/10.1108/S0897-301620140000022005
   Google Scholar
• Hyland-Wood, B., Gardner, J., Leask, J., & Ecker, U. K. H. (2021). Toward effective government communication strategies in the era of COVID-19. Humanities and Social Sciences Communications, 8(1), 30. https://doi.org/10.1057/s41599-020-00701-w
   Google Scholar
• Ihm, J., & Lee, C.-J. (2021). Toward more effective public health interventions during the COVID-19 pandemic: Suggesting audience segmentation based on social and media resources. Health Communication, 36(1), 98–108. https://doi.org/10.1080/10410236.2020.1847450
   PubMed Web of Science ®Google Scholar
• Keyton, J., & Beck, S. J. (2010). Perspectives: Examining communication as macrocognition in STS. Human Factors: The Journal of the Human Factors and Ergonomics Society, 52(2), 335–339. https://doi.org/10.1177/0018720810371338
   PubMed Web of Science ®Google Scholar
• Klein, G. (2007). Flexecution as a paradigm for replanning, part 1. IEEE Intelligent Systems, 22(5), 79–83. https://doi.org/10.1109/MIS.2007.4338498
   Web of Science ®Google Scholar
• Klein, G. (2008). Naturalistic decision making. Human Factors: The Journal of the Human Factors and Ergonomics Society, 50(3), 456–460. https://doi.org/10.1518/001872008X288385
   PubMed Web of Science ®Google Scholar
• Klein, H. A., & Lippa, K. D. (2012). Assuming control after system failure: Type II diabetes self-management. Cognition, Technology & Work, 14(3), 243–251. https://doi.org/10.1007/s10111-011-0206-3
   Web of Science ®Google Scholar
• Klein, G., Ross, K. G., Moon, B. M., Klein, D. E., Hoffman, R. R., & Hollnagel, E. (2003). Macrocognition. IEEE Intelligent Systems, 18(3), 81–85. https://doi.org/10.1109/MIS.2003.1200735
   Web of Science ®Google Scholar
• Koenig Kellas, J., Baker, J., Cardwell, M., Minniear, M., & Horstman, H. K. (2021). Communicated perspective-taking (CPT) and storylistening: Testing the impact of CPT in the context of friends telling stories of difficulty. Journal of Social and Personal Relationships, 38(1), 19–41. https://doi.org/10.1177/0265407520955239
   Web of Science ®Google Scholar
• KoenigKellas, J., & Horstman, H. (2015). Communicated narrative sense-making: Understanding family narratives, storytelling, and the construction of meaning through a communicative lens. In L. H. Turner & R. West (Eds.), The SAGE handbook of family communication (pp. 76–90). SAGE Publications, Inc. https://doi.org/10.4135/9781483375366.n5
   Google Scholar
• Koenig Kellas, J., Morgan, T., Taladay, C., Minton, M., Forte, J., & Husmann, E. (2020). Narrative connection: Applying CNSM theory’s translational storytelling heuristic. Journal of Family Communication, 20(4), 360–376. https://doi.org/10.1080/15267431.2020.1826485
   Web of Science ®Google Scholar
• Koenig Kellas, J., Willer, E. K., & Trees, A. R. (2013). Communicated perspective-taking during stories of marital stress: Spouses’ perceptions of one another’s perspective-taking behaviors. Southern Communication Journal, 78(4), 326–351. https://doi.org/10.1080/1041794X.2013.815264
   Google Scholar
• Kowalski, R. M., & Black, K. J. (2021). Protection motivation and the COVID-19 virus. Health Communication, 36(1), 15–22. https://doi.org/10.1080/10410236.2020.1847448
   PubMed Web of Science ®Google Scholar
• LaDonna, K. A., Taylor, T., & Lingard, L. (2018). Why open-ended survey questions are unlikely to support rigorous qualitative insights. Academic Medicine, 93(3), 347–349. https://doi.org/10.1097/ACM.0000000000002088
   PubMed Web of Science ®Google Scholar
• le May, A. (2008a). Generating patient capital: The contribution of storytelling in communities of practice designed to develop older people’s services. In A. le May (Ed.), Communities of practice in health and social care (pp. 95–106). John Wiley & Sons. http://ebookcentral.proquest.com/lib/bcu-trial/detail.action?docID=428209
   Google Scholar
• le May, A. (2008b). Introducing communities of practice. In A. le May (Ed.), Communities of practice in health and social care (pp. 1–16). John Wiley & Sons. http://ebookcentral.proquest.com/lib/ki/detail.action?docID=428209
   Google Scholar
• Lindström, M. (2020). The COVID-19 pandemic and the Swedish strategy: Epidemiology and postmodernism. SSM - Population Health, 11, 100643. https://doi.org/10.1016/j.ssmph.2020.100643
   PubMed Web of Science ®Google Scholar
• Lippa, K. D., Klein, H. A., & Shalin, V. L. (2008). Everyday expertise: Cognitive demands in diabetes self-management. Human Factors: The Journal of the Human Factors and Ergonomics Society, 50(1), 112–120. https://doi.org/10.1518/001872008X250601
   PubMed Web of Science ®Google Scholar
• Lucas, J. S., Burgess, A., Mitchison, H. M., Moya, E., Williamson, M., & Hogg, C. (2014). Diagnosis and management of primary ciliary dyskinesia. Archives of Disease in Childhood, 99(9), 850–856. https://doi.org/10.1136/archdischild-2013-304831
   PubMed Web of Science ®Google Scholar
• Maitlis, S., & Sonenshein, S. (2010). Sensemaking in crisis and change: Inspiration and insights from Weick (1988). Journal of Management Studies, 47(3), 551–580. https://doi.org/10.1111/j.1467-6486.2010.00908.x
   Web of Science ®Google Scholar
• Malterud, K., Siersma, V. D., & Guassora, A. D. (2016). Sample size in qualitative interview studies: Guided by information power. Qualitative Health Research, 26(13), 1753–1760. https://doi.org/10.1177/1049732315617444
   PubMed Web of Science ®Google Scholar
• Mamykina, L., Nakikj, D., & Elhadad, N. (2015). Collective sensemaking in online health forums. Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems, 2015-April, 3217–3226. https://doi.org/10.1145/2702123.2702566
   Google Scholar
• Margolis, P. A., Peterson, L. E., & Seid, M. (2013). Collaborative chronic care networks (C3Ns) to transform chronic illness care. Pediatrics, 131(Suppl 4), S219–223. https://doi.org/10.1542/peds.2012-3786J
   PubMed Web of Science ®Google Scholar
• Müller, J., Polansky, D., Novak, P., Foltin, C., & Polivaev, D. (2013). FreeMind (Version 1.0.1) [Computer Software]. GNU General Public License. http://freemind.sourceforge.net
   Google Scholar
• Nan, X., & Thompson, T. (2021). Introduction to the special issue on “Public health communication in an age of COVID-19”. Health Communication, 36(1), 1–5. https://doi.org/10.1080/10410236.2020.1853330
   PubMed Web of Science ®Google Scholar
• Nazione, S., Perrault, E., & Pace, K. (2021). Impact of information exposure on perceived risk, efficacy, and preventative behaviors at the beginning of the COVID-19 pandemic in the United States. Health Communication, 36(1), 23–31. https://doi.org/10.1080/10410236.2020.1847446
   PubMed Web of Science ®Google Scholar
• Papautsky, E. L., & Patterson, E. S. (2021). Patients are knowledge workers in the clinical information space. Applied Clinical Informatics, 12(01), 133–140. https://doi.org/10.1055/s-0041-1723022
   PubMed Web of Science ®Google Scholar
• Patterson, E. S., & Hoffman, R. R. (2012). Visualization framework of macrocognition functions. Cognition, Technology & Work, 14(3), 221–227. https://doi.org/10.1007/s10111-011-0208-1
   Web of Science ®Google Scholar
• Patterson, E. S., Su, G., & Sarkar, U. (2020). Reducing delays to diagnosis in ambulatory care settings: A macrocognition perspective. Applied Ergonomics, 82, 102965. https://doi.org/10.1016/j.apergo.2019.102965
   PubMed Web of Science ®Google Scholar
• Public Health Agency of Sweden. (2020a, March 17). Lärosäten och gymnasieskolor uppmanas nu att bedriva distansundervisning [Higher education institutions and high schools are requested to perform distance education]. https://www.folkhalsomyndigheten.se/nyheter-och-press/nyhetsarkiv/2020/mars/larosaten-och-gymnasieskolor-uppmanas-nu-att-bedriva-distansundervisning/
   Google Scholar
• Public Health Agency of Sweden. (2020b, March 13). Ny fas kräver nya insatser mot covid-19 [New phase requires new measures against COVID-19]. https://www.folkhalsomyndigheten.se/nyheter-och-press/nyhetsarkiv/2020/mars/ny-fas-kraver-nya-insatser-mot-covid-19/
   Google Scholar
• Public Health Agency of Sweden. (2021, March 10). Bekräftade fall i Sverige – daglig uppdatering [Confirmed cases in Sweden - daily updates]. Retrieved March 29, 2021, from https://www.folkhalsomyndigheten.se/smittskydd-beredskap/utbrott/aktuella-utbrott/covid-19/statistik-och-analyser/bekraftade-fall-i-sverige/
   Google Scholar
• Rambaree, K., & Nässén, N. (2020). ‘The Swedish strategy’ to COVID-19 pandemic: Impact on vulnerable and marginalised communities. The International Journal of Community and Social Development, 2(2), 234–250. https://doi.org/10.1177/2516602620936048
   Google Scholar
• Rasmussen, J. (1983). Skills, rules, and knowledge; signals, signs, and symbols, and other distinctions in human performance models. IEEE Transactions on Systems, Man, and Cybernetics, SMC-13(3), 257–266. https://doi.org/10.1109/TSMC.1983.6313160
   Web of Science ®Google Scholar
• Sawicki, G. S., Sellers, D. E., & Robinson, W. M. (2009). High treatment burden in adults with cystic fibrosis: Challenges to disease self-management. Journal of Cystic Fibrosis, 8(2), 91–96. https://doi.org/10.1016/j.jcf.2008.09.007
   PubMed Web of Science ®Google Scholar
• Schubert, C. C., Denmark, T. K., Crandall, B., Grome, A., & Pappas, J. (2013). Characterizing novice-expert differences in macrocognition: An exploratory study of cognitive work in the emergency department. Annals of Emergency Medicine, 61(1), 96–109. https://doi.org/10.1016/j.annemergmed.2012.08.034
   PubMed Web of Science ®Google Scholar
• Seid, M., Dellal, G., Peterson, L. E., Provost, L., Gloor, P. A., Fore, D. L., & Margolis, P. A. (2018). Co-designing a collaborative chronic care network (C3N) for inflammatory bowel disease: Development of methods. JMIR Human Factors, 5(1), 1–10. https://doi.org/10.2196/humanfactors.8083
   Google Scholar
• Shahid, Z., Kalayanamitra, R., McClafferty, B., Kepko, D., Ramgobin, D., Patel, R., Aggarwal, C. S., Vunnam, R., Sahu, N., Bhatt, D., Jones, K., Golamari, R., & Jain, R. (2020). COVID‐19 and older adults: What we know. Journal of the American Geriatrics Society, 68(5), 926–929. https://doi.org/10.1111/jgs.16472
   PubMed Web of Science ®Google Scholar
• Swan, M. (2009). Emerging patient-driven health care models: An examination of health social networks, consumer personalized medicine and quantified self-tracking. International Journal of Environmental Research and Public Health, 6(2), 492–525. https://doi.org/10.3390/ijerph6020492
   PubMed Web of Science ®Google Scholar
• Tagliacozzo, S., Albrecht, F., & Ganapati, N. E. (2021). International perspectives on COVID-19 communication ecologies: Public health agencies’ online communication in Italy, Sweden, and the United States. The American Behavioral Scientist, 65(7), 934–955. https://doi.org/10.1177/0002764221992832
   Web of Science ®Google Scholar
• Tracy, S. J. (2010). Qualitative quality: Eight “Big-Tent” criteria for excellent qualitative research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121
   Web of Science ®Google Scholar
• Weick, K. E., Sutcliffe, K. M., & Obstfeld, D. (2005). Organizing and the process of sensemaking. Organization Science, 16(4), 409–421. https://doi.org/10.1287/orsc.1050.0133
   Web of Science ®Google Scholar
• Wenger, E., McDermott, R., & Snyder, W. M. (2002). Cultivating communities of practice: A guide to managing knowledge. Harvard Business School Press.
   Google Scholar
• Ziaian, T., Sawyer, M. G., Reynolds, K. E., Carbone, J. A., Clark, J. J., Baghurst, P. A., Couper, J. J., Kennedy, D., Martin, A. J., Staugas, R. E., & French, D. J. (2006). Treatment burden and health-related quality of life of children with diabetes, cystic fibrosis and asthma. Journal of Paediatrics and Child Health, 42(10), 596–600. https://doi.org/10.1111/j.1440-1754.2006.00943.x
   PubMed Web of Science ®Google Scholar