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

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

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.

Figures

Fig. 1
Fig. 1
Flow diagram of literature search results, the inclusion process and the reason for exclusion

References

    1. Goldhill DR, Sumner A. Outcome of intensive care patients in a group of British intensive care units. Crit Care Med. 1998;26:1337–45. doi: 10.1097/00003246-199808000-00017.
    1. Moreno R, Morais P. Outcome prediction in intensive care: results of a prospective, multicentre. Portuguese study. Intensive Care Med. 1997;23:177–86. doi: 10.1007/s001340050313.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. Bastawrous M. Caregiver burden--a critical discussion. Int J Nurs Stud. 2013;50:431–41. doi: 10.1016/j.ijnurstu.2012.10.005.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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. . Accessed 22 January 2015.
    1. 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.
    1. 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.
    1. 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. doi: 10.1097/01.CCM.0000190428.71765.31.
    1. 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.
    1. 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.
    1. 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.
    1. Douglas SL, Daly BJ. Caregivers of long-term ventilator patients: physical and psychological outcomes. Chest. 2003;123:1073–81. doi: 10.1378/chest.123.4.1073.
    1. 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.
    1. Douglas SL, Daly BJ, O’Toole E, Hickman RL., Jr Depression among white and nonwhite caregivers of the chronically critically ill. J Crit Care. 2010;25:364 e11–9. doi: 10.1016/j.jcrc.2009.09.004.
    1. 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. doi: 10.1378/chest.125.2.597.
    1. 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.
    1. 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.
    1. 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.
    1. Swoboda SM, Lipsett PA. Impact of a prolonged surgical critical illness on patients’ families. Am J Crit Care. 2002;11:459–66.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. 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.
    1. Rodríguez AM. Psychosocial adaptation in relatives of critically injured patients admitted to an intensive care unit. Span J Psychol. 2005;8:1138–7416. doi: 10.1017/S1138741600004947.
    1. 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.
    1. 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.
    1. Foster M, Chaboyer W. Family carers of ICU survivors: a survey of the burden they experience. Scand J Caring Sci. 2003;17:205–14. doi: 10.1046/j.1471-6712.2003.00230.x.
    1. 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.
    1. 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.3367.
    1. 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. doi: 10.1016/S0277-9536(98)00214-7.
    1. 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.
    1. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70. doi: 10.1111/j.1600-0447.1983.tb09716.x.
    1. American Psychiatric Association . Diagnostic and statistical manual of mental disorders: DSM-IV. 4. Washington, DC: American Psychiatric Association; 1994.
    1. 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.
    1. 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.

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