Arnold, J., Diaz, M. C. (2016). Simulation training for primary caregivers in the neonatal intensive care unit. Seminars in Perinatology, 40(7), 466–472. https://doi.org/10.1053/j.semperi.2016.08.007
Google Scholar | Crossref Blom, H., Gustavsson, C., Sundler, A. J. (2013). Participation and support in intensive care as experienced by close relatives of patients: A phenomenological study. Intensive & Critical Care Nursing, 29(1), 1–8. https://doi.org/10.1016/j.iccn.2012.04.002
Google Scholar | Crossref Brinkman, S., de Jonge, E., Abu-Hanna, A., Arbous, M. S., de Lange, D. W., de Keizer, N. F. (2013). Mortality after hospital discharge in ICU patients. Critical Care Medicine, 41(5), 1229–1236. https://doi.org/10.1097/CCM.0b013e31827ca4e1
Google Scholar | Crossref Brown, S. M., Rozenblum, R., Aboumatar, H., Fagan, M. B., Milic, M., Lee, B. S., Turner, K., Frosch, D. L. (2015). Defining patient and family engagement in the intensive care unit. American Journal of Respiratory and Critical Care Medicine, 191(3), 358–360. https://doi.org/10.1164/rccm.201410-1936LE
Google Scholar | Crossref Burns, K., Misak, C., Herridge, M., Meade, M. O., Oczkowski, S. (2018). Patient and family engagement in the ICU: Untapped opportunities and underrecognized challenges. American Journal of Respiratory and Critical Care Medicine, 198(3), 310–319. https://doi.org/10.1164/rccm.201710-2032CI
Google Scholar | Crossref Cameron, J. I., Chu, L. M., Matte, A., Tomlinson, G., Chan, L., Thomas, C., Friedrich, J. O., Mehta, S., Lamontagne, F., Levasseur, M., Ferguson, N. D., Adhikari, N. K., Rudkowski, J. C., Meggison, H., Skrobik, Y., Flannery, J., Bayley, M., Batt, J., dos Santos, C., . . . Herridge, M. S. (2016). One-year outcomes in caregivers of critically ill patients. The New England Journal of Medicine, 374(19), 1831–1841. https://doi.org/10.1056/NEJMoa1511160
Google Scholar | Crossref Choi, J., Donahoe, M. P., Hoffman, L. A. (2016). Psychological and physical health in family caregivers of intensive care unit survivors: Current knowledge and future research strategies. Journal of Korean Academy of Nursing, 46(2), 159–167. https://doi.org/10.4040/jkan.2016.46.2.159
Google Scholar | Crossref Choi, J., Donahoe, M. P., Zullo, T. G., Hoffman, L. A. (2011). Caregivers of the chronically critically ill after discharge from the intensive care unit: Six months’ experience. American Journal of Critical Care, 20(1), 12–23. https://doi.org/10.4037/ajcc2011243
Google Scholar | Crossref Choi, J., Lingler, J. H., Donahoe, M. P., Happ, M. B., Hoffman, L. A., Tate, J. A. (2018). Home discharge following critical illness: A qualitative analysis of family caregiver experience. Heart & Lung, 47(4), 401–407. https://doi.org/10.1016/j.hrtlng.2018.04.003
Google Scholar | Crossref Davidson, J. E., Aslakson, R. A., Long, A. C., Puntillo, K. A., Kross, E. K., Hart, J., Cox, C. E., Wunsch, H., Wickline, M. A., Nunnally, M. E., Netzer, G., Kentish-Barnes, N., Sprung, C. L., Hartog, C. S., Coombs, M., Gerritsen, R. T., Hopkins, R. O., Franck, L. S., Skrobik, Y., . . . Curtis, J. R. (2017). Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine, 45(1), 103–128. https://doi.org/10.1097/CCM.0000000000002169
Google Scholar | Crossref Davidson, J. E., Harvey, M. A. (2016). Patient and family post-intensive care syndrome. AACN Advanced Critical Care, 27(2), 184–186. https://doi.org/10.4037/aacnacc2016132
Google Scholar | Crossref Douglas, S. L., Daly, B. J. (2003). Caregivers of long-term ventilator patients: Physical and psychological outcomes. Chest, 123(4), 1073–1081. https://doi.org/10.1378/chest.123.4.1073
Google Scholar | Crossref Garrouste-Orgeas, M., Willems, V., Timsit, J. F., Diaw, F., Brochon, S., Vesin, A., Philippart, F., Tabah, A., Coquet, I., Bruel, C., Moulard, M. L., Carlet, J., Misset, B. (2010). Opinions of families, staff, and patients about family participation in care in intensive care units. Journal of Critical Care, 25(4), 634–640. https://doi.org/10.1016/j.jcrc.2010.03.001
Google Scholar | Crossref Goldfarb, M. J., Bibas, L., Bartlett, V., Jones, H., Khan, N. (2017). Outcomes of patient- and family-centered care interventions in the ICU: A systematic review and meta-analysis. Critical Care Medicine, 45(10), 1751–1761. https://doi.org/10.1097/CCM.0000000000002624
Google Scholar | Crossref Hays, R. D., Bjorner, J. B., Revicki, D. A., Spritzer, K. L., Cella, D. (2009). Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Quality of Life Research, 18(7), 873–880. https://doi.org/10.1007/s11136-009-9496-9
Google Scholar | Crossref Hetland, B., Hickman, R., McAndrew, N., Daly, B. (2017). Factors influencing active family engagement in care among critical care nurses. AACN Advanced Critical Care, 28(2), 160–170. https://doi.org/10.4037/aacnacc2017118
Google Scholar | Crossref Hetland, B., McAndrew, N., Perazzo, J., Hickman, R. (2018). A qualitative study of factors that influence active family involvement with patient care in the ICU: Survey of critical care nurses. Intensive & Critical Care Nursing, 44, 67–75. https://doi.org/10.1016/j.iccn.2017.08.008
Google Scholar | Crossref Hickman, R. L., Douglas, S. L. (2010). Impact of chronic critical illness on the psychological outcomes of family members. AACN Advanced Critical Care, 21(1), 80–91.
Google Scholar | Crossref | Medline Kasza, J., Moran, J. L., Solomon, P. J. (2013). Evaluating the performance of Australian and New Zealand intensive care units in 2009 and 2010. Statistics in Medicine, 32(21), 3720–3736. https://doi.org/10.1002/sim.5779
Google Scholar | Crossref Levine, C., Reinhard, S. C. (2016). “It all falls on me”: Family caregiver perspectives on medication management, wound care, and video instruction. AARP Public Policy Institute and the United Hospital Fund. Retrieved May 20, 2021, from https://uhfnyc.org/publications/publication/it-all-falls-on-me/
Google Scholar | Crossref Li, H. (2002). Family caregivers’ preferences in caring for their hospitalized elderly relatives. Geriatric Nursing, 23(4), 204–207. https://doi.org/10.1067/mgn.2002.126966
Google Scholar | Crossref McAndrew, N. S., Jerofke-Owen, T., Fortney, C. A., Costa, D. K., Hetland, B., Guttormson, J., Harding, E. (2020a). Systematic review of family engagement interventions in neonatal, paediatric, and adult ICUs. Nursing in Critical Care. Advance online publication. https://doi.org/10.1111/nicc.12564
Google Scholar | Crossref McAndrew, N. S., Schiffman, R., Leske, J. (2020b). A theoretical lens through which to view the facilitators and disruptors of nurse-promoted engagement with families in the ICU. Journal of Family Nursing, 26(3), 190–212. https://doi.org/10.1177/1074840720936736
Google Scholar | SAGE Journals Melnyk, B. M., Morrison-Beedy, D. (2012). Intervention research: Designing, conducting, analyzing, and funding. Springer Publishing Company.
Google Scholar | Crossref Mitchell, M. L., Coyer, F., Kean, S., Stone, R., Murfield, J., Dwan, T. (2016). Patient, family-centred care interventions within the adult ICU setting: An integrative review. Australian Critical Care, 29(4), 179–193. https://doi.org/10.1016/j.aucc.2016.08.002
Google Scholar | Crossref Mykletun, A., Stordal, E., Dahl, A. A. (2001). Hospital anxiety and depression (HAD) scale: factor structure, item analyses and internal consistency in a large population. The British Journal of Psychiatry, 179(6), 540–544. https://doi.org/10.1192/bjp.179.6.540
Google Scholar | Crossref O’Brien, M. R., Rosenthal, M. S., Dharmarajan, K., Krumholz, H. M. (2015). Balloon animals, guitars, and fewer blood draws: Applying strategies from pediatrics to the treatment of hospitalized adults. Annals of Internal Medicine, 162(10), 726–727. https://doi.org/10.7326/M14-2219
Google Scholar | Crossref Olding, M., McMillan, S. E., Reeves, S., Schmitt, M. H., Puntillo, K., Kitto, S. (2016). Patient and family involvement in adult critical and intensive care settings: A scoping review. Health Expectations, 19(6), 1183–1202. https://doi.org/10.1111/hex.12402
Google Scholar | Crossref Ryan, P., Sawin, K. J. (2009). The individual and family self-management theory: Background and perspectives on context, process, and outcomes. Nursing Outlook, 57(4), 217–225.e6. https://doi.org/10.1016/j.outlook.2008.10.004
Google Scholar | Crossref Schnall, R., Liu, J., Cho, H., Hirshfield, S., Siegel, K., Olender, S. (2017). A health-related quality-of-life measure for use in patients with HIV: A validation study. AIDS Patient Care and STDs, 31(2), 43–48. https://doi.org/10.1089/apc.2016.0252
Google Scholar | Crossref Society of Critical Care Medicine (SCCM) . (2021). Critical care statistics. Society of Critical Care Medicine website. Retrieved May 20, 2021, from https://www.sccm.org/Communications/Critical-Care-Statistics
Google Scholar Stayt, L. C., Venes, T. J. (2019). Outcomes and experiences of relatives of patients discharged home after critical illness: A systematic integrative review. Nursing in Critical Care, 24(3), 162–175. https://doi.org/10.1111/nicc.12403
Google Scholar | Crossref Tate, J. A., Choi, J. (2020). Positive appraisal of caregiving for intensive care unit survivors: A qualitative secondary analysis. American Journal of Critical Care, 29(5), 340–349. https://doi.org/10.4037/ajcc2020953
Google Scholar | Crossref Tracy, M. F., Chlan, L., Savik, K., Skaar, D. J., Weinert, C. (2019). A novel research method for determining sedative exposure in critically ill patients. Nursing Research, 68(1), 73–79. https://doi.org/10.1097/NNR.0000000000000322
Google Scholar | Crossref van Beusekom, I., Bakhshi-Raiez, F., de Keizer, N. F., Dongelmans, D. A., van der Schaaf, M. (2016). Reported burden on informal caregivers of ICU survivors: A literature review. Critical Care, 20, 16. https://doi.org/10.1186/s13054-016-1185-9
Google Scholar | Crossref Wong, P., Redley, B., Bucknall, T. (2021). Families’ control preference for participation in patient care in adult intensive care. Intensive & Critical Care Nursing, 62, 102953. https://doi.org/10.1016/j.iccn.2020.102953
Google Scholar | Crossref Wong, P., Redley, B., Digby, R., Correya, A., Bucknall, T. (2020). Families’ perspectives of participation in patient care in an adult intensive care unit: A qualitative study. Australian Critical Care, 33(4), 317–325. https://doi.org/10.1016/j.aucc.2019.06.002
Google Scholar | Crossref Wyskiel, R. M., Chang, B. H., Alday, A. A., Thompson, D. A., Rosen, M. A., Dietz, A. S., Marsteller, J. A. (2015a). Towards expanding the acute care team: Learning how to involve families in care processes. Families, Systems & Health, 33(3), 242–249. https://doi.org/10.1037/fsh0000118
Google Scholar | Crossref Wyskiel, R. M., Weeks, K., Marsteller, J. A. (2015b). Inviting families to participate in care: A family involvement menu. Joint Commission Journal on Quality and Patient Safety, 41(1), 43–46. https://doi.org/10.1016/s1553-7250(15)41006-2
Google Scholar | Crossref