714760 editorial2017
WJNXXX10.1177/0193945917714760Western Journal of Nursing ResearchEditorial
Guest Editorial
Family Caregiving in Critical Illness: Research Opportunities and Considerations
Western Journal of Nursing Research 2017, Vol. 39(9) 1219–1221 © The Author(s) 2017 Reprints and permissions: sagepub.com/journalsPermissions.nav https://doi.org/10.1177/0193945917714760 DOI: 10.1177/0193945917714760 journals.sagepub.com/home/wjn
Family caregivers provide essential support, information, and surrogate decision making for critically ill patients and are recognized as important care partners with the clinical team in the intensive care unit (ICU). Unfortunately, many family members who assume a caregiving role during critical illness also experience the detrimental effects of this stressful life event. Periods of sleep disruption, poor nutrition, lack of exercise, uncertainty, and high stress during an ICU hospitalization place family caregivers at risk for a cluster of acute and long-term negative health consequences, termed post-intensive care syndrome–family (PICS-F; Davidson, Jones, & Bienvenu, 2012). There is currently little high-quality evidence for interventions effective in helping families of ICU patients and few interventions have been designed specifically to target PICS-F which is characterized by symptoms of anxiety, depression, post-traumatic stress disorder, and complicated grief (Davidson et al., 2017; Davidson et al., 2012). A multidisciplinary panel assembled by the American Academy of Critical Care Medicine recently completed a thorough scoping review and systematic review of evidence for interventions and outcomes regarding family-centered care in the ICU. The paper details areas of low evidence and outlines opportunities for future research. Specifically, the review revealed the need for evidence-based, precision approaches to accommodate individual family needs, abilities, and preferences for engagement (Davidson et al., 2017). Although family engagement is an accepted objective in critical care and component of the ICU liberation bundle (Society for Critical Care Medicine, n.d.), evidencebased definitions and patient-level measures of family engagement and presence in the ICU are needed (Davidson et al., 2017). Family caregivers’ preference and tolerance for engagement is variable, and more evidence is needed on accurate assessment of family preference for engagement and time points sensitive to intervention. Gill and colleagues (2016) in Canada’s Critical Care Strategic Clinical Network conducted interviews with ICU survivors and family caregivers who recommended the following areas for quality improvement research: (a) ICU family navigator program, (b) provider awareness of the fragility of family trust, (c) provider communication skills, (d) ICU transition, and
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Western Journal of Nursing Research 39(9)
(e) information for patients and family caregivers about the long-term effects of critical illness. Although there are numerous studies of interventions to support and improve family caregiver–physician communication and decision making (Scheunemann, McDevitt, Carson, & Hanson, 2011), we’ve found no studies of interventions to support communication between family caregiver and the communication-impaired critically ill patient. These gaps present tremendous opportunities for nursing research in the development and testing of theory-based interventions to support family caregivers during critical illness events and to prevent or ameliorate PICS-F. Family caregiver research in the ICU is not, however, for the faint of heart. Several system-related factors need to be overcome to develop and test meaningful, relevant, cutting edge interventions and intervention delivery methods. For example, patient health information privacy protections limit family access to patient health information that may be required for innovative use of the electronic health record and some types of electronic health applications, particularly in instances where the patient does not have decisional capacity to consent to research participation. Brown and colleagues (2016) conducted a review and ethical analysis of this problem in the ICU, recommending that “ . . . proxy decision makers be granted access to patient health information that is relevant to the current episode of care (p. 998).” With careful planning and administrative cooperation, family support interventions can be delivered through innovative applications of e-Health technology and telehealth. Family accessibility is an additional barrier to family-centered research and development in the ICU. Family presence and therefore, engagement in research, is often thwarted by distance to regional tertiary or quaternary care centers for specialized ICU care and competing caregiving and employment demands. Research coordinators and data collectors must be scheduled during evening hours and on weekends to accommodate family visitation schedules which can add significant cost to the research budget. Longitudinal follow-up studies require additional resources and planned efforts (such as postcards, emails, texts), to keep family participants engaged in the study. Technological solutions approved and supported by the Human Subjects Review Board, such as phone, video, Skype, and electronic consent, may be necessary in the recruitment, enrollment, and retention of family caregiver research participants. This is an exciting time for family caregiver research and nursing research leadership in the ICU. Nursing acknowledges the importance of families and has led research in family-centered care. The needs of critically ill patients and their families are enormous and adequately tested interventions to
Mary Beth Happ
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improve outcomes and health are few. Research led by nurses can improve lives of ICU patients and their families. Mary Beth Happ, PhD, RN, FAAN, FGSA Judith A. Tate, PhD, RN Center of Excellence in Critical and Complex Care, The Ohio State University College of Nursing, Columbus, USA References Brown, S. M., Aboumatar, H. J., Francis, L., Halamka, J., Rozenblum, R., Rubin, E., . . . Privacy, Access, and Engagement Task Force of the Libretto Consortium of the Gordon and Betty Moore Foundation. (2016). Balancing digital informationsharing and patient privacy when engaging families in the intensive care unit. Journal of the American Medical Informatics Association, 23, 995-100. Davidson, J. E., Aslakson, R. E., Long, A. C., Puntillo, K. A., Kross, E. K., Hart, J., . . . Curtis, J. R. (2017). Guidelines for family-centered care in the neonatal, pediatric and adult ICU. Critical Care Medicine, 45, 103-112. Davidson, J. E., Jones, C., & Bienvenu, O. J. (2012). Family response to critical illness: Post-intensive care syndrome–family. Critical Care Medicine, 40, 618-624. Gill, M., Bagshaw, S. M., McKenzie, E., Oxland, P., Oswell, D., Boulton, D., . . . Critical Care Strategic Clinical Network. (2016). Patient and family member-led research in the intensive care unit: A novel approach to patient-centered research. PLoS ONE. 11(8). doi:10.1371/journal.pone.0160947 Scheunemann, L. P., McDevitt, M., Carson, S. S., & Hanson, L. C. (2011). Randomized, controlled trials of interventions to improve communication in intensive care: A systematic review. Chest, 139, 543-554. Society for Critical Care Medicine. (n.d.). ICU liberation: Family engagement and empowerment. Retrieved from http://www.iculiberation.org/Bundles/Pages/ Family-Engagement.aspx
WJNXXX10.1177/0193945917714760Western Journal of Nursing ResearchEditorial
Guest Editorial
Family Caregiving in Critical Illness: Research Opportunities and Considerations
Western Journal of Nursing Research 2017, Vol. 39(9) 1219–1221 © The Author(s) 2017 Reprints and permissions: sagepub.com/journalsPermissions.nav https://doi.org/10.1177/0193945917714760 DOI: 10.1177/0193945917714760 journals.sagepub.com/home/wjn
Family caregivers provide essential support, information, and surrogate decision making for critically ill patients and are recognized as important care partners with the clinical team in the intensive care unit (ICU). Unfortunately, many family members who assume a caregiving role during critical illness also experience the detrimental effects of this stressful life event. Periods of sleep disruption, poor nutrition, lack of exercise, uncertainty, and high stress during an ICU hospitalization place family caregivers at risk for a cluster of acute and long-term negative health consequences, termed post-intensive care syndrome–family (PICS-F; Davidson, Jones, & Bienvenu, 2012). There is currently little high-quality evidence for interventions effective in helping families of ICU patients and few interventions have been designed specifically to target PICS-F which is characterized by symptoms of anxiety, depression, post-traumatic stress disorder, and complicated grief (Davidson et al., 2017; Davidson et al., 2012). A multidisciplinary panel assembled by the American Academy of Critical Care Medicine recently completed a thorough scoping review and systematic review of evidence for interventions and outcomes regarding family-centered care in the ICU. The paper details areas of low evidence and outlines opportunities for future research. Specifically, the review revealed the need for evidence-based, precision approaches to accommodate individual family needs, abilities, and preferences for engagement (Davidson et al., 2017). Although family engagement is an accepted objective in critical care and component of the ICU liberation bundle (Society for Critical Care Medicine, n.d.), evidencebased definitions and patient-level measures of family engagement and presence in the ICU are needed (Davidson et al., 2017). Family caregivers’ preference and tolerance for engagement is variable, and more evidence is needed on accurate assessment of family preference for engagement and time points sensitive to intervention. Gill and colleagues (2016) in Canada’s Critical Care Strategic Clinical Network conducted interviews with ICU survivors and family caregivers who recommended the following areas for quality improvement research: (a) ICU family navigator program, (b) provider awareness of the fragility of family trust, (c) provider communication skills, (d) ICU transition, and
1220
Western Journal of Nursing Research 39(9)
(e) information for patients and family caregivers about the long-term effects of critical illness. Although there are numerous studies of interventions to support and improve family caregiver–physician communication and decision making (Scheunemann, McDevitt, Carson, & Hanson, 2011), we’ve found no studies of interventions to support communication between family caregiver and the communication-impaired critically ill patient. These gaps present tremendous opportunities for nursing research in the development and testing of theory-based interventions to support family caregivers during critical illness events and to prevent or ameliorate PICS-F. Family caregiver research in the ICU is not, however, for the faint of heart. Several system-related factors need to be overcome to develop and test meaningful, relevant, cutting edge interventions and intervention delivery methods. For example, patient health information privacy protections limit family access to patient health information that may be required for innovative use of the electronic health record and some types of electronic health applications, particularly in instances where the patient does not have decisional capacity to consent to research participation. Brown and colleagues (2016) conducted a review and ethical analysis of this problem in the ICU, recommending that “ . . . proxy decision makers be granted access to patient health information that is relevant to the current episode of care (p. 998).” With careful planning and administrative cooperation, family support interventions can be delivered through innovative applications of e-Health technology and telehealth. Family accessibility is an additional barrier to family-centered research and development in the ICU. Family presence and therefore, engagement in research, is often thwarted by distance to regional tertiary or quaternary care centers for specialized ICU care and competing caregiving and employment demands. Research coordinators and data collectors must be scheduled during evening hours and on weekends to accommodate family visitation schedules which can add significant cost to the research budget. Longitudinal follow-up studies require additional resources and planned efforts (such as postcards, emails, texts), to keep family participants engaged in the study. Technological solutions approved and supported by the Human Subjects Review Board, such as phone, video, Skype, and electronic consent, may be necessary in the recruitment, enrollment, and retention of family caregiver research participants. This is an exciting time for family caregiver research and nursing research leadership in the ICU. Nursing acknowledges the importance of families and has led research in family-centered care. The needs of critically ill patients and their families are enormous and adequately tested interventions to
Mary Beth Happ
1221
improve outcomes and health are few. Research led by nurses can improve lives of ICU patients and their families. Mary Beth Happ, PhD, RN, FAAN, FGSA Judith A. Tate, PhD, RN Center of Excellence in Critical and Complex Care, The Ohio State University College of Nursing, Columbus, USA References Brown, S. M., Aboumatar, H. J., Francis, L., Halamka, J., Rozenblum, R., Rubin, E., . . . Privacy, Access, and Engagement Task Force of the Libretto Consortium of the Gordon and Betty Moore Foundation. (2016). Balancing digital informationsharing and patient privacy when engaging families in the intensive care unit. Journal of the American Medical Informatics Association, 23, 995-100. Davidson, J. E., Aslakson, R. E., Long, A. C., Puntillo, K. A., Kross, E. K., Hart, J., . . . Curtis, J. R. (2017). Guidelines for family-centered care in the neonatal, pediatric and adult ICU. Critical Care Medicine, 45, 103-112. Davidson, J. E., Jones, C., & Bienvenu, O. J. (2012). Family response to critical illness: Post-intensive care syndrome–family. Critical Care Medicine, 40, 618-624. Gill, M., Bagshaw, S. M., McKenzie, E., Oxland, P., Oswell, D., Boulton, D., . . . Critical Care Strategic Clinical Network. (2016). Patient and family member-led research in the intensive care unit: A novel approach to patient-centered research. PLoS ONE. 11(8). doi:10.1371/journal.pone.0160947 Scheunemann, L. P., McDevitt, M., Carson, S. S., & Hanson, L. C. (2011). Randomized, controlled trials of interventions to improve communication in intensive care: A systematic review. Chest, 139, 543-554. Society for Critical Care Medicine. (n.d.). ICU liberation: Family engagement and empowerment. Retrieved from http://www.iculiberation.org/Bundles/Pages/ Family-Engagement.aspx
