Skip to main content
SpringerLink
Log in

Life After the ICU: Post-intensive Care Syndrome in Family Members

  • Chapter
  • First Online:
Families in the Intensive Care Unit

Abstract

Family members of critically ill patients experience both acute and long-term psychological distress as a result of their loved one’s stay in an intensive care unit (ICU). The post-intensive care syndrome-family (PICS-F) describes this psychological morbidity, occurring in approximately 25–50% of family members of ICU patients. Psychological morbidity may manifest as anxiety, post-traumatic stress disorder (PTSD), depression, sleep disturbance, and complicated grief. A growing body of evidence supports measures taken during the ICU stay to mitigate these symptoms, including the use of family educational materials, formalized family meetings and enhanced team communication, the ICU diary, family engagement on rounds, and family presence during cardiopulmonary resuscitation and invasive procedures. Following an ICU stay, family members may benefit from ICU follow-up clinics and support groups. Providers may reduce the risk of psychological morbidity among the families of ICU patients through understanding and implementation of the interventions discussed throughout this chapter.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 89.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Davidson JE, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017;45(1):103–28.

    Article  Google Scholar 

  2. Netzer G, Sullivan DR. Recognizing, naming, and measuring a family intensive care unit syndrome. Ann Am Thorac Soc. 2014;11(3):435–41.

    Article  Google Scholar 

  3. Needham DM, et al. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders’ conference. Crit Care Med. 2012;40:502–9.

    Article  Google Scholar 

  4. Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive care syndrome-family. Crit Care Med. 2012;40(2):618–24.

    Article  Google Scholar 

  5. Desai SV, Law TJ, Needham DM. Long-term complications of critical care. Crit Care Med. 2011;39(2):371–9.

    Article  Google Scholar 

  6. Prendergast TJ. Resolving conflicts surrounding end-of-life care. New Horiz. 1997;5(1):62–71.

    CAS  PubMed  Google Scholar 

  7. Hopkins RO, Suchyta MR, Farrer TJ, Needham D. Improving post-intensive care unit neuropsychiatric outcomes: understanding cognitive effects of physical activity. Am J Respir Crit Care Med. 2012;186(12):1220–8.

    Article  Google Scholar 

  8. Pochard F, Darmon M, Fassier T, et al. Symptoms of anxiety and depression in family members of intensive care unit patients before discharge or death. A prospective multicenter study. J Crit Care. 2005;20(1):90–6.

    Article  Google Scholar 

  9. Anderson WG, Arnold RM, Angus DC, Bryce CL. Passive decision-making preference is associated with anxiety and depression in relatives of patients in the intensive care unit. J Crit Care. 2009;24(2):249–54.

    Article  Google Scholar 

  10. Cameron JI, Chu LM, Matte A, et al. One-year outcomes in caregivers of critically ill patients. N Engl J Med. 2016;374(19):1831–41.

    Article  CAS  Google Scholar 

  11. Rodríguez AM, Gregorio MA, Rodríguez AG. Psychological repercussions in family members of hospitalised critical condition patients. J Psychosom Res. 2005;58(5):447–51.

    Article  Google Scholar 

  12. Anderson WG, Arnold RM, Angus DC, Bryce CL. Posttraumatic stress and complicated grief in family members of patients in the intensive care unit. J Gen Intern Med. 2008;23(11):1871–6.

    Article  Google Scholar 

  13. Gries CJ, Engelberg RA, Kross EK, et al. Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU. Chest. 2010;137(2):280–7.

    Article  Google Scholar 

  14. Jones C, Skirrow P, Griffiths RD, et al. Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care. Intensive Care Med. 2004;30(3):456–60.

    Article  Google Scholar 

  15. Azoulay E, Pochard F, Kentish-Barnes N, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987–94.

    Article  Google Scholar 

  16. Hua M, Gong MN, Brady J, Wunsch H. Early and late unplanned rehospitalizations for survivors of critical illness*. Crit Care Med. 2015;43(2):430–8.

    Article  Google Scholar 

  17. Kross EK, Engelberg RA, Gries CJ, Nielsen EL, Zatzick D, Curtis JR. ICU care associated with symptoms of depression and posttraumatic stress disorder among family members of patients who die in the ICU. Chest. 2011;139(4):795–801.

    Article  Google Scholar 

  18. Petrinec AB, Mazanec PM, Burant CJ, Hoffer A, Daly BJ. Coping strategies and posttraumatic stress symptoms in post-ICU family decision makers. Crit Care Med. 2015;43(6):1205–12.

    Article  Google Scholar 

  19. Nelson JE, Hanson LC, Keller KL, et al. The voice of surrogate decision makers: family responses to prognostic information in chronic critical illness. Am J Respir Crit Care Med. 2017;196:864.

    Article  Google Scholar 

  20. Wall RJ, Curtis JR, Cooke CR, Engelberg RA. Family satisfaction in the ICU: differences between families of survivors and nonsurvivors. Chest. 2007;132(5):1425–33.

    Article  Google Scholar 

  21. Govindan S, Iwashyna TJ, Watson SR, Hyzy RC, Miller MA. Issues of survivorship are rarely addressed during intensive care unit stays. Baseline results from a statewide quality improvement collaborative. Ann Am Thorac Soc. 2014;11(4):587–91.

    Article  Google Scholar 

  22. Lynn J. Strategies to ease the burden of family caregivers. JAMA. 2014;311(10):1021–2.

    Article  CAS  Google Scholar 

  23. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–60.

    Article  CAS  Google Scholar 

  24. Cox CE, Docherty SL, Brandon DH, et al. Surviving critical illness: acute respiratory distress syndrome as experienced by patients and their caregivers. Crit Care Med. 2009;37(10):2702–8.

    Article  Google Scholar 

  25. Griffiths J, Hatch RA, Bishop J, et al. An exploration of social and economic outcome and associated health-related quality of life after critical illness in general intensive care unit survivors: a 12-month follow-up study. Crit Care. 2013;17(3):R100.

    Article  Google Scholar 

  26. McAdam JL, Dracup KA, White DB, Fontaine DK, Puntillo KA. Symptom experiences of family members of intensive care unit patients at high risk for dying. Crit Care Med. 2010;38(4):1078–85.

    Article  Google Scholar 

  27. Mistraletti G, Umbrello M, Mantovani ES, et al. A family information brochure and dedicated website to improve the ICU experience for patients’ relatives: an Italian multicenter before-and-after study. Intensive Care Med. 2017;43(1):69–79.

    Article  Google Scholar 

  28. Carson SS, Cox CE, Wallenstein S, et al. Effect of palliative care-led meetings for families of patients with chronic critical illness: a randomized clinical trial. JAMA. 2016;316(1):51–62.

    Article  CAS  Google Scholar 

  29. Curtis JR, Treece PD, Nielsen EL, et al. Randomized trial of communication facilitators to reduce family distress and intensity of end-of-life care. Am J Respir Crit Care Med. 2016;193(2):154–62.

    Article  Google Scholar 

  30. Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356(5):469–78.

    Article  CAS  Google Scholar 

  31. Mehlhorn J, Freytag A, Schmidt K, et al. Rehabilitation interventions for postintensive care syndrome: a systematic review. Crit Care Med. 2014;42(5):1263–71.

    Article  Google Scholar 

  32. Garrouste-Orgeas M, Coquet I, Périer A, et al. Impact of an intensive care unit diary on psychological distress in patients and relatives*. Crit Care Med. 2012;40(7):2033–40.

    Article  Google Scholar 

  33. Jabre P, Belpomme V, Azoulay E, et al. Family presence during cardiopulmonary resuscitation. N Engl J Med. 2013;368(11):1008–18.

    Article  CAS  Google Scholar 

  34. Jabre P, Tazarourte K, Azoulay E, et al. Offering the opportunity for family to be present during cardiopulmonary resuscitation: 1-year assessment. Intensive Care Med. 2014;40(7):981–7.

    Article  Google Scholar 

  35. McAlvin SS, Carew-Lyons A. Family presence during resuscitation and invasive procedures in pediatric critical care: a systematic review. Am J Crit Care. 2014;23:477–84.

    Article  Google Scholar 

  36. Gill M, Bagshaw SM, McKenzie E, et al. Patient and family member-led research in the intensive care unit: a novel approach to patient-centered research. PLoS One. 2016;11(8):e0160947.

    Article  Google Scholar 

  37. Maley JH, Brewster I, Mayoral I, et al. Resilience in survivors of critical illness in the context of the Survivors’ experience and recovery. Ann Am Thorac Soc. 2016;13(8):1351–60.

    Article  Google Scholar 

  38. Johnson JR, Engelberg RA, Nielsen EL, et al. The association of spiritual care providers’ activities with family members’ satisfaction with care after a death in the ICU*. Crit Care Med. 2014;42(9):1991–2000.

    Article  Google Scholar 

  39. Sottile PD, Lynch Y, Mealer M, Moss M. Association between resilience and family member psychologic symptoms in critical illness. Crit Care Med. 2016;44(8):e721–7.

    Article  CAS  Google Scholar 

  40. Nadig N, Huff NG, Cox CE, Ford DW. Coping as a multifaceted construct: associations with psychological outcomes among family members of mechanical ventilation survivors. Crit Care Med. 2016;44(9):1710–7.

    Article  Google Scholar 

  41. Kalaichandran A. Design thinking for doctors and nurses. New York Times, August 3, 2017.

    Google Scholar 

  42. Rendon J. Upside: the new science of post-traumatic growth. New York: Touchstone; 2015.

    Google Scholar 

  43. Newman R. The road to resilience. Monitor on psychology. 2002; http://www.apa.org/monitor/oct02/pp.aspx. Accessed April 11, 2017.

  44. Mikkelsen ME, Jackson JC, Hopkins RO, et al. Peer support as a novel strategy to mitigate post-intensive care syndrome. AACN Adv Crit Care. 2016;27(2):221–9.

    Article  Google Scholar 

  45. Jackson JC, Jutte JE. Rehabilitating a missed opportunity: integration of rehabilitation psychology into the care of critically ill patients, survivors, and caregivers. Rehab Psych. 2016;61(2):115–9.

    Article  Google Scholar 

  46. Cuthbertson BH, Rattray J, Campbell MK, et al. The PRaCTICaL study of nurse led, intensive care follow-up programmes for improving long term outcomes from critical illness: a pragmatic randomized controlled trial. BMJ. 2009;339:b3723.

    Article  CAS  Google Scholar 

  47. Jacobsen BS, Campbell R, Brooten D, et al. Comprehensive discharge planning and home follow-up of hospitalized elders: a randomized clinical trial. JAMA. 1999;281(7):613–20.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Jason H. Maley

  2. Medical Intensive Care Unit, Penn Presbyterian Medical Center, Philadelphia, PA, USA

    Julie Rogan & Mark E. Mikkelsen

  3. Critical Care Section, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA

    Mark E. Mikkelsen

Authors
  1. Jason H. Maley
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Julie Rogan
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Mark E. Mikkelsen
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jason H. Maley .

Editor information

Editors and Affiliations

  1. Division of Pulmonary and Critical Care Medicine, University of Maryland School of Medicine, Baltimore, MD, USA

    Giora Netzer

Rights and permissions

Reprints and permissions

Copyright information

© 2018 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Maley, J.H., Rogan, J., Mikkelsen, M.E. (2018). Life After the ICU: Post-intensive Care Syndrome in Family Members. In: Netzer, G. (eds) Families in the Intensive Care Unit. Springer, Cham. https://doi.org/10.1007/978-3-319-94337-4_10

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-94337-4_10

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-94336-7

  • Online ISBN: 978-3-319-94337-4

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation