Top

Critical Care

Published in:

Open Access 01-12-2015 | Research

Reported burden on informal caregivers of ICU survivors: a literature review

Authors: Ilse van Beusekom, Ferishta Bakhshi-Raiez, Nicolette F. de Keizer, Dave A. Dongelmans, Marike van der Schaaf

Published in: Critical Care | Issue 1/2016

Abstract

Background

Critical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients’ informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.

Method

We performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.

Results

The search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15 % and 24 %, depression between 4.7 % and 36.4 % and post-traumatic stress disorder (PTSD) between 35 % and 57.1 %. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.

Conclusions

Informal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.

Available only for authorised users

Goldhill DR, Sumner A. Outcome of intensive care patients in a group of British intensive care units. Crit Care Med. 1998;26:1337–45.PubMedCrossRef

Moreno R, Morais P. Outcome prediction in intensive care: results of a prospective, multicentre. Portuguese study. Intensive Care Med. 1997;23:177–86.PubMedCrossRef

Kasza J, Moran JL, Solomon PJ. Outcome AN-ANZICSCf, Resource Evaluation C. Evaluating the performance of Australian and New Zealand intensive care units in 2009 and 2010. Stat Med. 2013;32:3720–36. doi:10.1002/sim.5779.PubMedCrossRef

Brinkman S, de Jonge E, Abu-Hanna A, Arbous MS, de Lange DW, de Keizer NF. Mortality after hospital discharge in ICU patients. Crit Care Med. 2013;41:1229–36. doi:10.1097/CCM.0b013e31827ca4e1.PubMedCrossRef

van der Schaaf M, Beelen A, Dongelmans DA, Vroom MB, Nollet F. Functional status after intensive care: a challenge for rehabilitation professionals to improve outcome. J Rehabil Med. 2009;41:360–6. doi:10.2340/16501977-0333.PubMedCrossRef

Needham DM, Davidson J, Cohen H, Hopkins RO, Weinert C, Wunsch H, et al. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders’ conference. Crit Care Med. 2012;40:502–9. doi:10.1097/CCM.0b013e318232da75.PubMedCrossRef

Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive care syndrome-family. Crit Care Med. 2012;40:618–24. doi:10.1097/CCM.0b013e318236ebf9.PubMedCrossRef

Bastawrous M. Caregiver burden--a critical discussion. Int J Nurs Stud. 2013;50:431–41. doi:10.1016/j.ijnurstu.2012.10.005.PubMedCrossRef

Kentish-Barnes N, Lemiale V, Chaize M, Pochard F, Azoulay E. Assessing burden in families of critical care patients. Crit Care Med. 2009;37(10 Suppl):S448–56. doi:10.1097/CCM.0b013e3181b6e145.PubMedCrossRef

10.

Paul F, Rattray J. Short- and long-term impact of critical illness on relatives: literature review. J Adv Nurs. 2008;62:276–92. doi:10.1111/j.1365-2648.2007.04568.x.PubMedCrossRef

11.

Verhaeghe S, Defloor T, Van Zuuren F, Duijnstee M, Grypdonck M. The needs and experiences of family members of adult patients in an intensive care unit: a review of the literature. J Clin Nurs. 2005;14:501–9. doi:10.1111/j.1365-2702.2004.01081.x.PubMedCrossRef

12.

Kross EK, Gries CJ, Curtis JR. Posttraumatic stress disorder following critical illness. Crit Care Clin. 2008;24:875–87. doi:10.1016/j.ccc.2008.06.002.ix-x.PubMedCrossRef

13.

Haines KJ, Denehy L, Skinner EH, Warrillow S, Berney S. Psychosocial outcomes in informal caregivers of the critically ill: a systematic review. Crit Care Med. 2015;43:1112–20. doi:10.1097/CCM.0000000000000865.PubMedCrossRef

14.

McAdam JL, Puntillo K. Symptoms experienced by family members of patients in intensive care units. Am J Crit Care. 2009;18:200–9. doi:10.4037/ajcc2009252.PubMedCrossRef

15.

Wells G OCD, Peterson J, Welch V, Losos M, Tugwell P. The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analysis. http://www.ohri.ca/programs/clinical_epidemiology/oxford.asp. Accessed 22 January 2015.

16.

Maher CG, Sherrington C, Herbert RD, Moseley AM, Elkins M. Reliability of the PEDro scale for rating quality of randomized controlled trials. Phys Ther. 2003;83:713–21.PubMed

17.

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;23:1871–6. doi:10.1007/s11606-008-0770-2.PubMedPubMedCentralCrossRef

18.

Cameron JI, Herridge MS, Tansey CM, McAndrews MP, Cheung AM. Well-being in informal caregivers of survivors of acute respiratory distress syndrome. Crit Care Med. 2006;34:81–6.PubMedCrossRef

19.

Choi J, Donahoe MP, Zullo TG, Hoffman LA. Caregivers of the chronically critically ill after discharge from the intensive care unit: six months’ experience. Am J Crit Care. 2011;20:12–22. doi:10.4037/ajcc2011243. quiz 3.PubMedPubMedCentralCrossRef

20.

Choi J, Sherwood PR, Schulz R, Ren D, Donahoe MP, Given B, et al. Patterns of depressive symptoms in caregivers of mechanically ventilated critically ill adults from intensive care unit admission to 2 months postintensive care unit discharge: a pilot study. Crit Care Med. 2012;40:1546–53. doi:10.1097/CCM.0b013e3182451c58.PubMedPubMedCentralCrossRef

21.

Cox CE, Docherty SL, Brandon DH, Whaley C, Attix DK, Clay AS, et al. Surviving critical illness: acute respiratory distress syndrome as experienced by patients and their caregivers. Crit Care Med. 2009;37:2702–8. doi:10.1097/CCM.0b013e3181b6f64a.PubMedPubMedCentralCrossRef

22.

Douglas SL, Daly BJ. Caregivers of long-term ventilator patients: physical and psychological outcomes. Chest. 2003;123:1073–81.PubMedCrossRef

23.

Douglas SL, Daly BJ, Kelley CG, O’Toole E, Montenegro H. Impact of a disease management program upon caregivers of chronically critically ill patients. Chest. 2005;128:3925–36. doi:10.1378/chest.128.6.3925.PubMedCrossRef

24.

Douglas SL, Daly BJ, O’Toole E, Hickman Jr RL. Depression among white and nonwhite caregivers of the chronically critically ill. J Crit Care. 2010;25:364 e11–9.PubMedCrossRef

25.

Im K, Belle SH, Schulz R, Mendelsohn AB, Chelluri L, Investigators Q-M. Prevalence and outcomes of caregiving after prolonged (> or =48 hours) mechanical ventilation in the ICU. Chest. 2004;125:597–606.PubMedCrossRef

26.

McAdam JL, Fontaine DK, White DB, Dracup KA, Puntillo KA. Psychological symptoms of family members of high-risk intensive care unit patients. Am J Crit Care. 2012;21:386–93. doi:10.4037/ajcc2012582. quiz 94.PubMedCrossRef

27.

Van Pelt DC, Milbrandt EB, Qin L, Weissfeld LA, Rotondi AJ, Schulz R, et al. Informal caregiver burden among survivors of prolonged mechanical ventilation. Am J Respir Crit Care Med. 2007;175:167–73. doi:10.1164/rccm.200604-493OC.PubMedPubMedCentralCrossRef

28.

Van Pelt DC, Schulz R, Chelluri L, Pinsky MR. Patient-specific, time-varying predictors of post-ICU informal caregiver burden: the caregiver outcomes after ICU discharge project. Chest. 2010;137:88–94. doi:10.1378/chest.09-0795.PubMedPubMedCentralCrossRef

29.

Swoboda SM, Lipsett PA. Impact of a prolonged surgical critical illness on patients’ families. Am J Crit Care. 2002;11:459–66.PubMed

30.

Wartella JE, Auerbach SM, Ward KR. Emotional distress, coping and adjustment in family members of neuroscience intensive care unit patients. J Psychosom Res. 2009;66:503–9. doi:10.1016/j.jpsychores.2008.12.005.PubMedCrossRef

31.

Agard AS, Lomborg K, Tonnesen E, Egerod I. Rehabilitation activities, out-patient visits and employment in patients and partners the first year after ICU: a descriptive study. Intensive Crit Care Nurs. 2014;30:101–10. doi:10.1016/j.iccn.2013.11.001.PubMedCrossRef

32.

Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, Adrie C, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171:987–94. doi:10.1164/rccm.200409-1295OC.PubMedCrossRef

33.

Bayen E, Pradat-Diehl P, Jourdan C, Ghout I, Bosserelle V, Azerad S, et al. Predictors of informal care burden 1 year after a severe traumatic brain injury: results from the PariS-TBI study. J Head Trauma Rehabil. 2013;28:408–18. doi:10.1097/HTR.0b013e31825413cf.PubMedCrossRef

34.

Garrouste-Orgeas M, Coquet I, Perier A, Timsit JF, Pochard F, Lancrin F, et al. Impact of an intensive care unit diary on psychological distress in patients and relatives*. Crit Care Med. 2012;40:2033–40. doi:10.1097/CCM.0b013e31824e1b43.PubMedCrossRef

35.

Jones C, Backman C, Griffiths RD. Intensive care diaries and relatives’ symptoms of posttraumatic stress disorder after critical illness: a pilot study. Am J Crit Care. 2012;21:172–6. doi:10.4037/ajcc2012569.PubMedCrossRef

36.

Jones C, Skirrow P, Griffiths RD, Humphris G, Ingleby S, Eddleston J, et al. Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care. Intensive Care Med. 2004;30:456–60. doi:10.1007/s00134-003-2149-5.PubMedCrossRef

37.

Lemiale V, Kentish-Barnes N, Chaize M, Aboab J, Adrie C, Annane D, et al. Health-related quality of life in family members of intensive care unit patients. J Palliat Med. 2010;13:1131–7. doi:10.1089/jpm.2010.0109.PubMedCrossRef

38.

de Miranda S, Pochard F, Chaize M, Megarbane B, Cuvelier A, Bele N, et al. Postintensive care unit psychological burden in patients with chronic obstructive pulmonary disease and informal caregivers: a multicenter study. Crit Care Med. 2011;39:112–8. doi:10.1097/CCM.0b013e3181feb824.PubMedCrossRef

39.

Myhren H, Ekeberg O, Langen I, Stokland O. Emotional strain, communication, and satisfaction of family members in the intensive care unit compared with expectations of the medical staff: experiences from a Norwegian University Hospital. Intensive Care Med. 2004;30:1791–8. doi:10.1007/s00134-004-2375-5.PubMedCrossRef

40.

Rodríguez AM. Psychosocial adaptation in relatives of critically injured patients admitted to an intensive care unit. Span J Psychol. 2005;8:1138–7416.CrossRef

41.

Rodríguez AM, Gregorio MA, Rodriguez AG. Psychological repercussions in family members of hospitalised critical condition patients. J Psychosom Res. 2005;58:447–51. doi:10.1016/j.jpsychores.2004.11.011.PubMedCrossRef

42.

Young E, Eddleston J, Ingleby S, Streets J, McJanet L, Wang M, et al. Returning home after intensive care: a comparison of symptoms of anxiety and depression in ICU and elective cardiac surgery patients and their relatives. Intensive Care Med. 2005;31:86–91. doi:10.1007/s00134-004-2495-y.PubMedCrossRef

43.

Foster M, Chaboyer W. Family carers of ICU survivors: a survey of the burden they experience. Scand J Caring Sci. 2003;17:205–14.PubMedCrossRef

44.

Dithole K, Thupayagale-Tshweneagae G, Mgutshini T. Posttraumatic stress disorder among spouses of patients discharged from the intensive care unit after six months. Issues Ment Health Nurs. 2013;34:30–5. doi:10.3109/01612840.2012.715235.PubMedCrossRef

45.

Kim Y, Carver CS, Rocha-Lima C, Shaffer KM. Depressive symptoms among caregivers of colorectal cancer patients during the first year since diagnosis: a longitudinal investigation. Psychooncology. 2013;22:362–7. doi:10.1002/pon.2100.PubMedCrossRef

46.

Nieboer AP, Schulz R, Matthews KA, Scheier MF, Ormel J, Lindenberg SM. Spousal caregivers’ activity restriction and depression: a model for changes over time. Soc Sci Med. 1998;47:1361–71.PubMedCrossRef

47.

Cooper C, Balamurali TB, Livingston G. A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia. International Psychogeriatrics/IPA. 2007;19:175–95. doi:10.1017/S1041610206004297.PubMedCrossRef

48.

Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.PubMedCrossRef

49.

American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-IV. 4th ed. Washington, DC: American Psychiatric Association; 1994.

50.

Jones C, Skirrow P, Griffiths RD, Humphris GH, Ingleby S, Eddleston J, et al. Rehabilitation after critical illness: a randomized, controlled trial. Crit Care Med. 2003;31:2456–61. doi:10.1097/01.CCM.0000089938.56725.33.PubMedCrossRef

51.

Van der Schaaf M, Bakhshi-Raiez F, Van der Steen M, Dongelmans DA, De Keizer NF. Recommendations for the organization of intensive care follow-up clinics; report from a survey and conference of Dutch intensive cares. Minerva Anestesiol. 2014;81:135–44.

Title: Reported burden on informal caregivers of ICU survivors: a literature review
Authors: Ilse van Beusekom
Ferishta Bakhshi-Raiez
Nicolette F. de Keizer
Dave A. Dongelmans
Marike van der Schaaf
Publication date: 01-12-2015
Publisher: BioMed Central
Published in: Critical Care / Issue 1/2016
Electronic ISSN: 1364-8535
DOI: https://doi.org/10.1186/s13054-016-1185-9

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Reported burden on informal caregivers of ICU survivors: a literature review

Abstract

Background

Method

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Method

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 1/2016

Unexpected versus all-cause mortality as the endpoint for investigating the effects of a Rapid Response System in hospitalized patients

Variable use of amiodarone is associated with a greater risk of recurrence of atrial fibrillation in the critically ill

Does galactomannan testing increase diagnostic accuracy for IPA in the ICU? A prospective observational study

Lower versus higher dose of enteral caloric intake in adult critically ill patients: a systematic review and meta-analysis

Noninvasive ventilation with helmet versus control strategy in patients with acute respiratory failure: a systematic review and meta-analysis of controlled studies

The vulnerable microcirculation in the critically ill pediatric patient