Here is a literature list about the ICU diary (last update February 25th, 2018)

Studies (ordered in date of publish)

Bergbom I, Svensson C, Berggren E, Kamsula M. (1999): Patients' and relatives' opinions and feelings about diaries kept by nurses in an intensive care unit: pilot study. Intensive Crit Care Nurs. Aug;15(4):185-91.

Rier, D. (2000): The missing voice of the critically ill: a medical sociologist's first-person account. Sociology of Health & Illness, Volume 22, Number 1, January, pp. 68-93(26)

Bäckman CG, Walther SM. (2001): Use of a personal diary written on the ICU during critical illness. Intensive Care Med. Feb;27(2):426-9.

Åkerman, E. (2002): Patient diary and follow up after intensivecare. Patient/patdagbok/akermaneva_eng.htm, last contact on 2.5.08

Jones C, Capuzzo M, Flaatten H, et al. (2006): ICU diaries may reduce symptoms of posttraumatic stress disorder. Intensive Care Med 32 (Suppl 1): S144.

Egerod I, Schwartz-Nielsen KH, Hansen GM, Laerkner E. (2007): The extent and application of patient diaries in Danish ICUs in 2006. Nurs Crit Care. May-Jun;12(3):159-67.

Roulin MJ, Hurst S, Spirig R. (2007): Diaries written for ICU patients. Qual Health Res. Sep;17(7):893-901.

Storli SL, Lindseth A, Asplund K. (2007): “Being somewhere else” – delusion or relevant experience? A phenomenological investigation into the meaning of lived experience from being in intensive care. International Journal of qualitative studies on health and well being, 2(3), 144-159

Storli SL, Lindseth A, Asplund K. (2008):  A journey in quest of meaning: a hermeneutic-phenomenological study on living with memories from intensive care. Nurs Crit Care. Mar-Apr;13(2):86-96

Robson, W. (2008): An evaluation of patient diaries in intensive care. World of critical care nursing (6) 2: 34-37

Hayes A, Kelly A (2008). patient diaries: can they off psychological help to cancer patients? Cancer Nursing practice 7(6): 25-28.

Kloos JA, Daly BJ. (2008). Effect of a Family-Maintained Progress Journal on anxiety of families of critically ill patients. Crit Care Nurs Q. 31(2):96-107

Knowles RE, Tarrier N. (2009). Evaluation of the effect of prospective patient diaries on emotional well-being in intensive care unit survivors: a randomized controlled trial. Crit Care Med. Jan;37(1):184-91

Engström A, Grip K, Hamrén M. (2009): Experiences of intensive care unit diaries: 'touching a tender wound'. Nurs Crit Care 14(2): 61-7

Storli SL, Lind R. (2009): The meaning of follow-up in intensive care: patients' perspective. Scand J Caring Sci. Mar;23(1):45-56

Egerod I, Christensen D (2009): Analysis of patient diaries in Danish ICUs: a narrative approach. Intensive Crit Care Nurs. 2009 Oct;25(5):268-77

Greco MM, Florio SD, Romani M, Romigi G Portis L. (2009). L’utilizzo dei “Diari del paziente” in Terapia Intensiva. Scenario 26 (4): 22-27.

Åkerman E, Anetth Granberg-Axéll A, Anders Ersson A, Bengt Fridlund B, Bergbom I (2010): Use and practice of patient diaries in Swedish intensive care units: a national survey. Nursing in Critical Care 15 (1): 26 – 33

Nydahl P, Knück D, Egerod I (2010): The extend and application of patient diaries in German Intensive Care Units. Connect – The World of Critical Care Nursing 7 (2): 122-126

Bäckman CG, Orwelius L, Sjöberg F, Fredrikson M, Walther SM. (2010): Long-term effect of the ICU-diary concept on quality of life after critical illness. Acta Anaesthesiol Scand. 54(6):736-43

Gjengedal E, Storli SL, Norlemann Holme A, Eskerud RS (2010): An act of caring – patient diaries in Norwegian intensive care units. Nursing in Critical Care 15 (4):176 – 184

Egerod I, Bagger C (2010):  Patients' experiences of intensive care diaries-A focus group study. Intensive Crit Care Nurs. Oct;26(5):278-87

Egerod I, Christensen D. (2010) A Comparative Study of ICU Patient Diaries vs. Hospital Charts. Qualitative Health Research 22(10) 1446–1456.

Knück D, Nydahl P (2010): Einführung des Intensivtagebuches: Erste Erfahrungen sind positiv (German). Pflegen Intensiv 3 (10): 36-40.

Egerod I, Storli SL, Åkerman E. (2011). Intensive care patient diaries in Scandinavia: a comparative study of emergence and evolution. Nurs Inq. Sep;18(3):235-46

Nydahl P, Knück D, Bischoff K, Fritzsch A (2011). Evaluationsstudie Das Tagebuch war eine große Hilfe für mich (German). Pflegen Intensiv 1: 29-34

Egerod I, Christensen D, Schwartz-Nielsen KH, Ågård AS. (2011). Constructing the illness narrative: A grounded theory exploring patients’ and relatives’ use of intensive care diaries. Crit Care Med Vol. 39(9), 1922-8.

Jones C, Bäckman C, Capuzzo M, Egerod I, Flaatten H, Granja C, Rylander C, Griffiths RD; RACHEL group (2010). Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: a randomised, controlled trial. Crit Care 14(5):R168. Epub 2010 Sep 15.

Garrouste-Orgeas M, Coquet I, Perier A, Timsit JF, Pochard F, Lancrin F, Philippart F, Vesin A, Bruel C, Blel Y, Angeli S, Cousin N, Carlet J, Misset B. Impact of an intensive care unit diary on psychological distress in patients and relatives Crit Care Med. 2012 Jul;40(7):2033-40.

Jones, C, Bäckman C, Griffith C. (2012). Intensive Care diaries reduce PTSD-related symptoms in relatives following critical illness. Am J Crit Care 21 (3): 172-6.

Greco MM, Portis L, Galizio M (2012). Attitudini e percezioni del personale sanitario nell’utilizzo dei Diari di Terapia Intensiva. Scenario 29 (2): 12-18.

Akerman E, Ersson A, Fridlund B, Samuelson K. Preferred content and usefulness of a photodiary as described by ICU-patients-A mixed method analysis. Aust Crit Care. 2013 Feb;26(1):29-35.

Perier A, Revah-Levy A, Bruel C, Cousin N, Angeli S, Brochon S, Philippart F, Max A, Gregoire C, Misset B, Garrouste-Orgeas M (2013). Phenomenological analysis of healthcare worker perceptions of intensive care unit diaries. Crit Care. 2013 Jan 21;17(1):R13

Egerod I, Risom SS, Thomsen T, Storli SL, Eskerud RS, Holme AN, Samuelson KA. ICU-recovery in Scandinavia: A comparative study of intensive care follow-up in Denmark, Norway and Sweden. Intensive Crit Care Nurs. 2013. In press.

Ewens B, Chapman R, Tulloch A, Hendricks JM. ICU survivors' utilisation of diaries post discharge: A qualitative descriptive study. Aust Crit Care. 2014 Feb;27(1):28-35.

Nydahl P, Bäckman CG, Bereuther J, Thelen M (2014). How much time do nurses need to write an ICU diary? Nursing in Critical Care, 19(5):222-7.19(5):222-7.

Aitken LM, Rattray J, Hull A, Kenardy JA, Le Brocque R, Ullman AJ. The use of diaries in psychological recovery from intensive care. Crit Care. 2013 Dec 18;17(6):253

Di Gangi S, Naretto G, Cravero N, Livigni S.A narrative-based study on communication by family members in intensive care unit. J Crit Care. 2013 Aug;28(4):483-9.

Garrouste-Orgeas M, Périer A, Mouricou P, Grégoire C, Bruel C, Brochon S, Philippart F, Max A, Misset B. Writing in and reading ICU diaries: qualitative study of families' experience in the ICU. PLoS One. 2014 Oct 16;9(10):e110146.

Nair R, Mitchell M, Keogh S. The extent and application of patient diaries in Australian intensive care units: A national survey. Australian Critical Care. in press

Nydahl P, Knueck D, Egerod I (2015). Extent and application of ICU diaries in Germany in 2014. Nursing in Critical Care. 20(3):155-62.

Groß, C. (2014). Diaries on intensive care units. The view of the nurses (German: Patiententagebücher auf Intensivstation. Eine Betrachtung aus Sicht der Pflegenden. In: Schiff, A. (Hg.) Familien in kritischen Situationen der klinischen Pflege. Opladen: Barbara Budrich. 165-186.)

Ullman AJ, Aitken LM, Rattray J, Kenardy J, Le Brocque R, MacGillivray S, Hull AM. Diaries for recovery from critical illness. Cochrane Database Syst Rev. 2014 Dec 9;12:CD010468

Johansson M, Hanson E, Runeson I, Wåhlin I. Family members' experiences of keeping a diary during a sick relative's stay in the intensive care unit: A hermeneutic interview study. Intensive Crit Care Nurs. 2015 Mar 5.

Engström Å, Rogmalm K, Marklund L, Wälivaara BM. Follow-up visit in an ICU: receiving a sense of coherence. Nurs Crit Care. 2015 Feb 18. doi: 10.1111/nicc.12168.

Christensen M, Probst B. Barbara's story: a thematic analysis of a relative's reflection of being in the intensive care unit. Nurs Crit Care. 2015 Mar;20(2):63-70.

Ewens BA, Hendricks JM, Sundin D. The use, prevalence and potential benefits of a diary as a therapeutic intervention/tool to aid recovery following critical illness in intensive care: a literature review. J Clin Nurs. 2015 May;24(9-10):1406-25.

Lichtenberger, D. (2015). Erfolgreich konzipieren und implementieren (German: succesful designing and implementation). Intensiv 23 (3): 140-143.

Ullman AJ, Aitken LM, Rattray J, Kenardy J, Le Brocque R, MacGillivray S, Hull AM. (2015) Intensive care diaries to promote recovery for patients and families after critical illness: A Cochrane Systematic Review. Int J Nurs Stud., in press

Heindl P, Bachlechner A (2015). Coping mit dem Intensivtagebuch (German: Coping by an ICU diary). QuPuG 1(2): 92-100.

Glimelius Petersson C, Ringdal M, Apelqvist G, Bergbom I. Diaries and memories following an ICU stay: a 2-month follow-up study. Nurs Crit Care. 2015 May 25. doi: 10.1111/nicc.12162.

Nielsen AH, Angel S. How diaries written for critically ill influence the relatives: a systematic review of the literature. Nursing in Critical Care 2015, doi: 10.1111/nicc.12158

Nielsen AH, Angel S. Relatives perception of writing diaries for critically ill. A phenomenological hermeneutical study. Nursing in Critical Care 2015, doi: 10.1111/nicc.12147

Fukuda T, Inoue T, Kinoshita Y, Yukawa T. Effectiveness of ICU Diaries: Improving “Distorted Memories” Encountered during ICU Admission. Open Journal of Nursing 2015, 5, 313-324.

Stayt LC, Seers K, Tutton L. Making sense of it: intensive care patients' phenomenological accounts of story construction. Nurs Crit Care. 2015 Nov 9. doi: 10.1111/nicc.12224.

Nielsen AH, Angel S. (2016). How diaries written for critically ill influence the relatives: a systematic review of the literature. Nursing in Critical Care.

Beg M, Scruth E, Liu V. Developing a framework for implementing intensive care unit diaries: a focused review of the literature. Aust Crit Care. 2016 Nov;29(4):224-234.

Locke M, Eccleston S, Ryan CN, Byrnes TJ, Mount C, McCarthy MS. Developing a Diary Program to Minimize Patient and Family Post-Intensive Care Syndrome. AACN Adv Crit Care. 2016 Apr-Jun;27(2):212-20.

O'Gara G, Pattison N. A qualitative exploration into the long-term perspectives of patients receiving critical care diaries across the United Kingdom. Intensive Crit Care Nurs. 2016 Jun 7

Hester M, Ingalls NK, Hatzfeld JJ. Perceptions of ICU Diary Utility and Feasibility in a Combat ICU. Mil Med. 2016 Aug;181(8):895-9.

Nielsen AH, Angel S. Consolation or confrontation when interacting through an ICU diary - A phenomenological-hermeneutical study. Intensive Crit Care Nurs. 2016 Aug 10

Heindl P, Bachlechner A, Nydahl P, Egerod I. Extent and application of patient diaries in Austria: process of continuing adaptation. Nurs Crit Care. 2016 Sep 21.

Blair KTA, BA, Eccleston SD, Binder HM, McCarthy MS. Improving the Patient Experience by Implementing an ICU Diary for Those at Risk of Post-intensive Care Syndrome. Journal of Patient Experience. Journal of Patient Experience 2017, Feb. doi 10.1177/2374373517692927

Teece A, Baker J. Thematic Analysis: How do patient diaries affect survivors' psychological recovery? Intensive Crit Care Nurs. 2017 Mar 28. pii: S0964-3397(16)30135-5.

Ednell AK, Siljegren S, Engström Å. The ICU patient diary-A nursing intervention that is complicated in its simplicity: A qualitative study. Intensive Crit Care Nurs. 2017 Feb 20

Aitken LM, Rattray J, Kenardy J, Hull AM, Ullman AJ, Le Brocque R, Mitchell M, Davis C, Castillo MI, Macfarlane B. Perspectives of patients and family members regarding psychological support using intensive care diaries: An exploratory mixed methods study. J Crit Care. 2017 Apr;38:263-268

Johansson M, Wåhlin I, Magnusson L, Runeson I, Hanson E. Family members' experiences with intensive care unit diaries when the patient does not survive. Scand J Caring Sci. 2017 May 19. doi: 10.1111/scs.12454

Scruth EA, Oveisi N, Liu V. Innovation and Technology: Electronic Intensive Care Unit Diaries. AACN Adv Crit Care. 2017 Summer;28(2):191-199.

Huynh TG, Covalesky M, Sinclair S, Gunter H, Norton T, Chen A, Yi C. Measuring Outcomes of an Intensive Care Unit Family Diary Program. AACN Adv Crit Care. 2017 Summer;28(2):179-190

Laxton, L. (2017). Implementing the ICU diary in the medical intensive care unit. SIS Quarterly Practice Connections, 2(2), 19–20.

Egerod I, Andersson AE, Fagerdahl AM, Knudsen VE. Images of suffering depicted in diaries of family caregivers in the acute stage of necrotising soft tissue infection: A content analysis. Intensive Crit Care Nurs. 2017 Aug;41:57-62.

Mikkelsen G. The meaning of personal diaries to children and families in the paediatric intensive care unit: A qualitative study. Intensive Crit Care Nurs. 2017 Nov 25

Garrouste-Orgeas M, Flahault C, Fasse L, Ruckly S, Amdjar-Badidi N, Argaud L, Badie J, Bazire A, Bige N, Boulet E, Bouadma L, Bretonnière C, Floccard B, Gaffinel A, de Forceville X, Grand H, Halidfar R, Hamzaoui O, Jourdain M, Jost PH, Kipnis E, Large A, Lautrette A, Lesieur O, Maxime V, Mercier E, Mira JP, Monseau Y, Parmentier-Decrucq E, Rigaud JP, Rouget A, Santoli F, Simon G, Tamion F, Thieulot-Rolin N, Thirion M, Valade S, Vinatier I, Vioulac C, Bailly S, Timsit JF. The ICU-Diary study: prospective, multicenter comparative study of the impact of an ICU diary on the wellbeing of patients and families in French ICUs. Trials. 2017 Nov 15;18(1):542

Schoeman T, Sundararajan K, Micik S, Sarada P, Edwards S, Poole A, Chapman M. The impact on new-onset stress and PTSD in relatives of critically ill patients explored by diaries study (The "INSPIRED" study). Aust Crit Care. 2017 Dec 15.

Strandberg S, Vesterlund L, Engström Å. The contents of a patient diary and its significance for persons cared for in an ICU: A qualitative study. Intensive Crit Care Nurs. 2017 Dec 30.

Posters & Abstracts

Bäckman C, Johanson E, Walther SM: The intensive care diary can help the critically ill to cope with temporary memory loss and unpleasant recall. ESICM-meeting in Stockholm 1998

Jones C, Capuzzo M, Flaatten H, Backman C, Rylander C, Griffiths RD (2009). INTENSIVE CARE DIARIES MAY REDUCE LATER SYMPTOMS OF POSTTRAUMATIC STRESS DISORDER. ESICM Annual Congress, Barcelona, Spain 24-27 September 2006

Nydahl P, Knück D. Research about the ICU-diary in Germany. 5th international congress of the German sepsis society in Weimar Sept. 7-11 2011

Treusacher L, Ansorge A, Dingwerth T, Papesch I, Orlikowsky T. EINFÜHRUNG EINES INTENSIVTAGEBUCHES BEI FRÜHGEBORENEN < 31. SSW (GERMAN). 37. Jahrestagung der Gesellschaft für Neonatologie und Pädiatrische Intensivmedizin am 26. - 28. Mai 2011 im Congress Center Rosengarten in Mannheim.

Tung HT, Nordin N, Edginton T, Vizcaychipi M. (2015). Objective analysis of patient diaries used in an intensive care unit (ICU) in a London teaching hospital. Intensive Care Medicine Experimental 3(Suppl 1):A719

Cabon S, Debue AS, Charpentier J, Asselie N, Brunie C, Ericher N, Grcia J, Gidel L, Lanclas H, Pileyre A, Mira JP, Pene F. (2015). Caregivers perception of the implementation of an ICU diary. Intensive Care Medicine Experimental 3(Suppl 1):A653

Egerod I, Andersson AE, Fagerdahl A-M, Knudsen V. Experience of necrotizing soft tissue infection in the acute stage: content analysis of diaries written by close family in Denmark and Sweden (p-infect, family). Intensive Care Medicine Experimental 2016, 4(Suppl 1):A107

Aitken LM, Rattray J, Kenardy J, Hull AM, Ullman A, Le Broque R, Mitchell M, Davis C, Macfarlane B. Similarities and differences in patients' and relatives' views of information provision after ICU. Intensive Care Medicine Experimental 2016, 4(Suppl 1):A810

McCarthy, Mary; Mount, Cristin; Eccleston, Sarah: IMPROVING THE POST-INTENSIVE CARE SYNDROME PATIENT EXPERIENCE WITH AN ICU DIARY PROGRAM. Crit Care Med 2016 44 (12): 827

Nedder, Melanie; Ryan-Avery, Kathleen; Reilly, Karen; Levine, Sharon. The Patient's Perspective of the Intensive Care Unit (ICU) Diary in the Cardiac ICU. AACN National Teaching Institute in Houston, Texas, May 22-25, 2017


Easton, S. (2006): Patient diary guidelines. Sussex Critical Care Network.

Egerod, I. (2008). Klinisk vejledning for patientdagbøger i intensivafdelingen (Clinical guideline for patient diaries in ICU). UCSF, Copenhagen

Storli SL, Eskerud RS, Gjengedal E, Holme AN, Synnevåg H (2011). Nasjonale anbefalinger for bruk av dagbok til pasienter ved norske intensivavdelinger (pdf) (National guidelines for the use of patient diaries in Norwegian Intensive Care Units).

Articles or related studies

Schou, I, Nordvik M, Torseth AM, Fet U, Thon I, Mokkelgard M (1993): Dagbok til intensive patienter [Diary for the intensive care patients]. Nye Fagoscopet 4, 7-10

Bäckman CG (1998). Dagbok fran en intensivvardsavdelning. Landstingsvärlden 33: 16-17

Bäckman CG, Walther, SM. (1999). Kritisk tid pa intensiven dokumenteras i dagbook. Läkartidningen: 96 (5): 468-470

Storli, S. L. 2001, "Dagbok og oppfølgningssamtale som kilder til forståelse av intensivtid," in Sykepleie. Praksis og utvikling, E. Gjengedal & R. Jakobsen, eds., Cappelen Akademisk Forlag, Oslo, pp. 394-405.

Griffith RD, Jones C (2001): Filling the intensive care memory gap? Intensive Care Med 27: 344-346

Douglas SL, Daly BJ, Gordon N & Brennan PF (2002) Survival and quality of life: Short-term versus long-term ventilator patients, Critical Care Medicine 30 (12): 2655-2662

Backman, C. G. 2002, "Patient diaries in ICU," in Intensive Care Aftercare, R. D. Griffiths & C. Jones, eds., Butterworth Heinemann, Oxford, pp. 125-129.

Strahan E; McCormick J; Uprichard E; Nixon S; Lavery G (2003): Immediate follow-up after ICU discharge: establishment of a service and initial experiences. Nursing in Critical Care, Mar-Apr; 8 (2): 49-55

Storli, S.; Lind, R.; Viotti, I. (2003): Using diaries in intensive care: a method for following up patients. Connect: the world of critical care 2 (4): 103-108.

Combe D. (2005): The use of patient diaries in an intensive care unit. Nurs Crit Care. 2005 Jan-Feb;10(1):31-4

Bagger C (2006): Diary for critically ill patients [Danish]. Sygeplejersken / Danish Journal of Nursing, Dec 15; 106 (25-26): 62-5

Roulin M; Spirig R (2006): Developing a care program to better know the chronically critically ill. Intensive & Critical Care Nursing, Dec; 22 (6): 355-61

Alfheim HB; Wheeler M (2007): Psychological consequences of critical illness: what is the long term impact on patients and how can nurses help? CONNECT: The World of Critical Care Nursing; 5 (4): 89-95

Griffith, RD; Jones, C. (2007): Seven lessons from 20 years of follow-up of intensive care unit survivors. Curr Opin Crit Care 13: 508-513

Roulin MJ (2007): journal de bord à l'intention des patients. Diary for intensive care patients. [french]  oxymage n°92- janvier/février 200: 10-12

Kloos JA; Daly BJ (2008): Effect of a family-maintained progress journal on anxiety of families of critically ill patients. Critical Care Nursing Quarterly, Apr-Jun; 31 (2): 96-109

Sawyer J; Wright FC; Moura SL; Maier B; Fitch MI (2008): Introducing a patient-focused care map in colorectal surgery: a pilot qualitative study of patients' and surgical oncology nurses' experiences. Canadian Oncology Nursing Journal, Winter; 18 (1): 25-8, 33

Roulin MJ (2008): Le journal de bordpour les patients des soins intensifs. Diary for intensive care patients. [french] Krankenpflege Soins infirmiers 12: 47-49

Knück, D.; Nydahl, P. (2008): Das Intensivtagebuch in Deutschland. [German] Intensiv 5 (16): 249-255

Bagger, C.; Knück, D.; Nydahl, P.(2009): Intensivtagebuch – Brücke zur Erinnerung. [German] Die Schwester Der Pfleger 1 (48): 40-44

Querques J. (2009): Can reading a diary improve psychological outcomes in the intensive care unit? Crit Care Med. Jan;37(1):356-7

Jones, C. (2009): Commentary: Knowles RE, Tarrier N (2009). Evaluation of the effect of prospective patient diaries on emotional well-being in intensive care unit survivors: a randomized control trial. Nursing in Critical Care,14 No 3

Nydahl, P; Knück, D. (2009): Intensivtagebuch – von der Idee zur Praxis. Pflegen Intensiv 3: 16-22

Samuelson KAM, Corrigan I (2009): A nurse-led intensive care after-care programme – development, experiences and preliminary evaluation. Nursing in critical care 14, 5: 254-263

Knück D, Nydahl P (2010): Einführung des Intensivtagebuches: Erste Erfahrungen sind positiv (German). Pflegen Intensiv 3 (10): 36-40

Hale M, Parfitt L, Rich T. How diaries can improve the experience of intensive care patients. Nurs Manag (Harrow). 2010 Dec;17(8):14-8.

Backman C, Jones C (2010). Implementing a diary programme on your ICU. ICU Management 11 (3): 10-16

Thomas J, Bell E. Lost days--diaries for military intensive care patients. J R Nav Med Serv. 2011;97(1):11-5.

Phillips C (2011). Use of patient diaries in critical care. Nursing Standard. 26, 11, 35-43.

Ansorge, A. (2011). Intensivtagebuch für Frühgeborene (German). Kinderkrankenschwester 12250 (30): 1-8

Arlt, Y. (2011). Das Frühchentagebuch (German). Intensiv 19(5):249–253

Bäckman C, Jones C (2011). Implementing a diary programme in your ICU. ICU management 11(3): 10-16.

Deacon KS. What Happened to Me in the ICU? The Patient's Perspective Intensive Crit Care Nurs. 2012;28:114-122

Engström Å, Nyström N, Sundelin G, Rattray J. People’s experiences of being mechanically ventilated in an ICU: A qualitative study. Intensive Crit Care Nurs (2012),

Parker AM, Sricharoenchai T, Needham DM. Early Rehabilitation in the Intensive Care Unit: Preventing Impairment of Physical and Mental Health. Curr Phys Med Rehabil Rep, 2013, DOI 10.1007/s40141-013-0027-9.

Mehlhorn J, Freytag A, Schmidt K, Brunkhorst FM, Graf J, Troitzsch U, Schlattmann P, Wensing M, Gensichen J. Rehabilitation Interventions for Postintensive Care Syndrome: A Systematic Review. Crit Care Med. 2014 Jan 9. [Epub ahead of print]

Jones C, Bäckman C, Egerod I, Gibb P, Nydahl P, Storli S. Report on Third International Intensive Aftercare Conference in Norrköping, Sweden. Nurs Crit Care. 2014 Jul 15. doi: 10.1111/nicc.12108.

Ullman A, Aitken L. The use of diaries to promote recovery after critical illness. Qld Nurse. 2014 Oct;33(5):26.

Martin, Judy J. ICU Diary: The Gift of Care™.American Nurse Today;9(10). 11

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 Feb 4

Parker AM, Sricharoenchai T, Raparla S, Schneck KW, Bienvenu OJ, Needham DM. Posttraumatic Stress Disorder in Critical Illness Survivors: A Metaanalysis. Crit Care Med. 2015 Feb 4.

Karnatovskaia LV, Gajic O, Bienvenu OJ, Stevenson JE, Needham DM. A holistic approach to the critically ill and Maslow's hierarchy. J Crit Care. 2015 Feb;30(1):210-1.

Svenningsen H, Langhorn L, Ågård AS, Dreyer P. Post-ICU symptoms, consequences, and follow-up: an integrative review. Nurs Crit Care. 2015 Feb 17. doi: 10.1111/nicc.12165.

Forsberg A, Engström A, Söderberg S. From reaching the end of the road to a new lighter life - people's experiences of undergoing gastric bypass surgery. Intensive Crit Care Nurs. 2014 Apr;30(2):93-100.

Warlan H, Howland L. (2015). Posttraumatic stress syndrome associated with stays in the intensive care unit: importance of nurses' involvement. Crit Care Nurse. 35(3):44-52.

Wintermann G-B, Brunkhorst FM, Petrowski K, Strauss B, Oehmichen F, Pohl M, Rosendahl J (2015). Stress Disorders Following Prolonged Critical Illness in Survivors of Severe Sepsis. Critical Care Medicine.

Egerod I, Bergboom I, Lindahl B, Lindahl B, Henricson M, Granberg-Axell A, Storli SL (2015). The patient experience of intensive care: A meta-synthesis of Nordic studies. Int. J. Nurs. Stud. (2015),

Clancy O, Edginton T, Casarin A, Vizcaychipi MP (2015). The psychological and neurocognitive consequences of critical illness. ournal of the Intensive Care Society 16(3): 226-233

Karnatovskaia LV, Johnson MM, Benzo RP, Gajic O. The spectrum of psychocognitive morbidity in the critically ill: a review of the literature and call for improvement. J Crit Care. 2015 Feb;30(1):130-7.

Heyland DK, Garland A, Bagshaw SM, Cook D, Rockwood K, Stelfox HT, Dodek P, Fowler RA, Turgeon AF, Burns K, Muscedere J, Kutsogiannis J, Albert M, Mehta S, Jiang X, Day AG. Recovery after critical illness in patients aged 80 years or older: a multi-center prospective observational cohort study. Intensive Care Med. 2015 Nov;41(11):1911-20.

Bench S, Day T, Heelas K, Hopkins P, White C, Griffiths P. Evaluating the feasibility and effectiveness of a critical care discharge information pack for patients and their families: a pilot cluster randomised controlled trial. BMJ Open. 2015 Nov 27;5(11):e006852.

Gallop KH, Kerr CE, Nixon A, Verdian L, Barney JB, Beale RJ. A qualitative investigation of patients' and caregivers' experiences of severe sepsis*. Crit Care Med. 2015 Feb;43(2):296-307

Burry L, Cook D, Herridge M, Devlin JW, Fergusson D, Meade M, Steinberg M, Skrobik Y, Olafson K, Burns K, Dodek P, Granton J, Ferguson N, Jacka M, Tanios M, Fowler R, Reynolds S, Keenan S, Mallick R, Mehta S; SLEAP Investigators; Canadian Critical Care Trials Group. Recall of ICU Stay in Patients Managed With a Sedation Protocol or a Sedation Protocol With Daily Interruption. Crit Care Med. 2015 Oct;43(10):2180-90.

Castillo MI et al. Trait Anxiety But Not State Anxiety During Critical Illness Was Associated With Anxiety and Depression Over 6 Months After ICU. Crit Care Med. (2015)

Holm A, Dreyer P. Intensive care unit patients' experience of being conscious during endotracheal intubation and mechanical ventilation. Nurs Crit Care. 2015 Jul 15.

Lazaridis C. Where was I when I was in a coma? Intensive Care Med. 2015 Nov;41(11):1971-2

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

Warrillow S, Farley KJ, Jones D. Ten practical strategies for effective communication with relatives of ICU patients. Intensive Care Med. 2015 Dec;41(12):2173-6.

Aitken LM, Macfarlane B, Chaboyer W, Schuetz M, Joyce C, Barnett AG. Physical Function and Mental Health in Trauma Intensive Care Patients: A 2-Year Cohort Study. Crit Care Med. 2015 Dec 9.

van Beusekom I, Bakhshi-Raiez F, de Keizer NF, Dongelmans DA, van der Schaaf M. Reported burden on informal caregivers of ICU survivors: a literature review. Crit Care. 2016 Jan 21;20(1):16.

Biehl M, Kashyap R, Ahmed AH, Reriani MK, Ofoma UR, Wilson GA, Li G, Malinchoc M, Sloan JA, Gajic O. Six-month quality-of-life and functional status of acute respiratory distress syndrome survivors compared to patients at risk: a population-based study. Crit Care. 2015 Oct 2;19:356.

Harvey MA, Davidson JE. Postintensive Care Syndrome: Right Care, Right Now…and Later. Crit Care Med. 2016 Feb;44(2):381-5.

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 Apr 8

Turnbull AE, Rabiee A, Davis WE, Nasser MF, Venna VR, Lolitha R, Hopkins RO, Bienvenu OJ, Robinson KA, Needham DM. Outcome Measurement in ICU Survivorship Research From 1970 to 2013: A Scoping Review of 425 Publications. Crit Care Med. 2016 Mar 17

Rabiee A, Nikayin S, Hashem MD, Huang M, Dinglas VD, Bienvenu OJ, Turnbull AE, Needham DM. Depressive Symptoms After Critical Illness: A Systematic Review and Meta-Analysis. Crit Care Med. 2016 May 5.

Norman BC, Jackson JC, Graves JA, Girard TD, Pandharipande PP, Brummel NE, Wang L, Thompson JL, Chandrasekhar R, Ely EW. Employment Outcomes After Critical Illness: An Analysis of the Bringing to Light the Risk Factors and Incidence of Neuropsychological Dysfunction in ICU Survivors Cohort. Crit Care Med. 2016 May 11

Huang M, Parker AM, Bienvenu OJ, Dinglas VD, Colantuoni E, Hopkins RO, Needham DM; National Institutes of Health, National Heart, Lung, and Blood Institute Acute Respiratory Distress Syndrome Network. Psychiatric Symptoms in Acute Respiratory Distress Syndrome Survivors: A 1-Year National Multicenter Study. Crit Care Med. 2016 May;44(5):954-65.

McKinley S, Fien M, Elliott R, Elliott D. Health-Related Quality of Life and Associated Factors in Intensive Care Unit Survivors 6 Months After Discharge. Am J Crit Care. 2016 Jan;25(1):52-8

Liput SA, Kane-Gill SL, Seybert AL, Smithburger PL. A Review of the Perceptions of Healthcare Providers and Family Members Toward Family Involvement in Active Adult Patient Care in the ICU. Crit Care Med. 2016 Jun;44(6):1191-7

Nikayin S, Rabiee A, Hashem MD, Huang M, Bienvenu OJ, Turnbull AE, Needham DM. Anxiety symptoms in survivors of critical illness: a systematic review and meta-analysis. Gen Hosp Psychiatry. 2016 Nov - Dec;43:23-29

Choi J, Tate JA, Donahoe MP, Ren D, Hoffman LA, Chasens ER. Sleep in family caregivers of ICU survivors for two months post-ICU discharge. Intensive Crit Care Nurs. 2016 Dec;37:11-18.

Mistraletti G, Umbrello M, Mantovani ES, Moroni B, Formenti P, Spanu P, Anania S, Andrighi E, Di Carlo A, Martinetti F, Vecchi I, Palo A, Pinna C, Russo R, Francesconi S, Valdambrini F, Ferretti E, Radeschi G, Bosco E, Malacarne P, Iapichino G; Investigators.. 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. 2016 Nov 9.

Garrouste-Orgeas M, Vinatier I, Tabah A, Misset B, Timsit JF. Reappraisal of visiting policies and procedures of patient's family information in 188 French ICUs: a report of the Outcomerea Research Group. Ann Intensive Care. 2016 Dec;6(1):82.

Davidson JE, Aslakson RA, Long AC, Puntillo KA, Kross EK, Hart J, Cox CE, Wunsch H, Wickline MA, Nunnally ME, Netzer G, Kentish-Barnes N, Sprung CL, Hartog CS, Coombs M, Gerritsen RT, Hopkins RO, Franck LS, Skrobik Y, Kon AA, Scruth EA, Harvey MA, Lewis-Newby M, White DB, Swoboda SM, Cooke CR, Levy MM, Azoulay E, Curtis JR. Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU. Crit Care Med. 2017 Jan;45(1):103-128.

Barnato AE, Schenker Y, Tiver G, Dew MA, Arnold RM, Nunez ER, Reynolds CF 3rd. Storytelling in the Early Bereavement Period to Reduce Emotional Distress Among Surrogates Involved in a Decision to Limit Life Support in the ICU: A Pilot Feasibility Trial. Crit Care Med. 2017 Jan;45(1):35-46.

Kynoch K, Chang A, Coyer F, McArdle A. The effectiveness of interventions to meet family needs of critically ill patients in an adult intensive care unit: a systematic review update. JBI Database System Rev Implement Rep. 2016 Mar;14(3):181-234.

Wintermann GB, Weidner K, Strauß B, Rosendahl J, Petrowski K. Predictors of posttraumatic stress and quality of life in family members of chronically critically ill patients after intensive care. Ann Intensive Care. 2016 Dec;6(1):69.

Rydingsward JE, Horkan CM, Mogensen KM, Quraishi SA, Amrein K, Christopher KB. Functional Status in ICU Survivors and Out of Hospital Outcomes: A Cohort Study. Crit Care Med. 2016 May;44(5):869-79.

Choi J, Donahoe MP, Hoffman LA. Psychological and Physical Health in Family Caregivers of Intensive Care Unit Survivors: Current Knowledge and Future Research Strategies. J Korean Acad Nurs. 2016 Apr;46(2):159-67

de Azevedo JRA, Montenegro WS, Rodrigues DP, de C. Souza SC, Araujo VFS, de Paula MP, et al. Long-term cognitive outcomes among unselected ventilated and non-ventilated ICU patients. Journal of Intensive Care 2017;5(1):18.

Hashem MD, Nallagangula A, Nalamalapu S, Nunna K, Nausran U, Robinson KA, Dinglas VD, Needham DM, Eakin MN. Patient outcomes after critical illness: a systematic review of qualitative studies following hospital discharge. Crit Care. 2016 Oct 26;20(1):345.

Hopkins RO, Wade D, Jackson JC. What's new in cognitive function in ICU survivors. Intensive Care Med. 2017 Feb;43(2):223-225.

Gawlytta R, Niemeyer H, Böttche M, Scherag A, Knaevelsrud C, Rosendahl J. Internet -based cognitive-behavioural writing therapy for reducing post-traumatic stress after intensive care for sepsis in patients and their spouses (REPAIR): study protocol for a randomised-controlled trial. BMJ Open. 2017 Feb 22;7(2):e014363.

Aitken LM, Rattray J, Hull AM. The creation of patient diaries as a therapeutic intervention - for whom? Nurs Crit Care. 2017 Mar;22(2):67-69

Warlan H, Howland L. Posttraumatic stress syndrome associated with stays in the intensive care unit: importance of nurses' involvement. Crit Care Nurse. 2015 Jun;35(3):44-52

Davidson JE, Stutzer K. The Ethics of Post-Intensive Care Syndrome. AACN Adv Crit Care. 2016 Apr-Jun;27(2):236-40

Francis L, Vorwaller MA, Aboumatar H, Frosch DL, Halamka J, Rozenblum R, Rubin E, Lee BS, Sugarman J, Turner K, Brown SM; Privacy, Access, and Engagement Task Force of the Libretto Consortium of the Gordon and Betty Moore Foundation.. A Clinician's Guide to Privacy and Communication in the ICU. Crit Care Med. 2017 Mar;45(3):480-485

Haines KJ, Kelly P, Fitzgerald P, Skinner EH, Iwashyna TJ. The Untapped Potential of Patient and Family Engagement in the Organization of Critical Care. Crit Care Med. 2017 Feb 23.

Wyskiel RM, Weeks K, Marsteller JA. Inviting Families to Participate in Care: A Family Involvement Menu. The Joint Commission Journal on Quality and Patient Safety 41(1): 43-46.

Gerritsen RT, Hartog CS, Curtis JR. New developments in the provision of family-centered care in the intensive care unit. Intensive Care Med. 2017 Apr;43(4):550-553.

de Azevedo JR, Montenegro WS, Rodrigues DP, de C Souza SC, Araujo VF, de Paula MP, Prazeres PH, da Luz Leitão A, Mendonça AV. Long-term cognitive outcomes among unselected ventilated and non-ventilated ICU patients. J Intensive Care. 2017 Feb 17;5:18

Chung CR, Yoo HJ, Park J, Ryu S. Cognitive Impairment and Psychological Distress at Discharge from Intensive Care Unit. Psychiatry Investig. 2017 May;14(3):376-379.

Rawal G, Yadav S, Kumar R. Post-intensive care syndrome: An overview. J Transl Intern Med 2017; 5: 90-92.

Kjer CKW, Estrup S, Poulsen LM, Mathiesen O. Follow-up after intensive care treatment: a questionnaire survey of intensive care aftercare in Denmark. Acta Anaesthesiol Scand. 2017 Jul 7. doi: 10.1111/aas.12938

Jónasdóttir RJ, Jónsdóttir H, Gudmundsdottir B, Sigurdsson GH. Psychological recovery after intensive care: Outcomes of a long-term quasi-experimental study of structured nurse-led follow-up. Intensive Crit Care Nurs. 2017 Jul 21. pii: S0964-3397(17)30080-0

Puntillo KA, Max A, Chaize M, Chanques G, Azoulay E. Patient Recollection of ICU Procedural Pain and Post ICU Burden: The Memory Study. Crit Care Med. 2016 Nov;44(11):1988-1995.

Goldfarb MJ, Bibas L, Bartlett V, Jones H, Khan N. Outcomes of Patient- and Family-Centered Care Interventions in the ICU: A Systematic Review and Meta-Analysis. Crit Care Med. 2017 Oct;45(10):1751-1761

Ceri E Battle, Karen James, Tom Bromfield, Paul Temblett. Predictors of post-traumatic stress disorder following critical illness: A mixed methods study. Journal of the Intensive Care Society 2017, doi 10.1177/1751143717713853

Dziadzko V, Dziadzko MA, Johnson MM, Gajic O, Karnatovskaia LV. Acute psychological trauma in the critically ill: Patient and family perspectives. Gen Hosp Psychiatry. 2017 Jul;47:68-74

Hosey MM, Jaskulski JJ, Mantheiy EC, Kudchadkar SR, Wegener ST, Needham DM. Animal-assisted activity in the intensive care unit. ICU Management & Practice 2017 (17) 3: 193-195

Milton A, Brück E, Schandl A, Bottai M, Sackey P. Early psychological screening of intensive care unit survivors: a prospective cohort study. Crit Care. 2017 Nov 9;21(1):273.

Lewis CL, Taylor JZ. Impact of prior ICU experience on ICU patient family members' psychological distress: A descriptive study. Intensive Crit Care Nurs. 2017 Dec;43:129

After Care

Jones C,  Skirrow P, Griffins RD et al. Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care. Intensive Care Medicine 2004; 30:456-60

Griffith RD, Jones C (2007): Seven lessons from 20 years of follow-up on intensive care unit survivors. Curr Opin Care 13: 508-513

Jones C, Griffiths RD. (2007): Patient and caregiver counselling after the intensive care unit: what are the needs and how should they be met? Curr Opin Crit Care. Oct;13(5):503-7

Jones C, Backman C, Capuzzo M, Flaatten H, Rylander C, Griffiths RD. Precipitants of post-traumatic stress disorder following intensive care: a hypothesis generating study of diversity in care. Intens Care Med 2007;33(6):978-985

Rattray JE; Hull AM (2008): Emotional outcome after intensive care: literature review.; Journal of Advanced Nursing, Oct; 64 (1): 2-13

Davidson JE, Jones C & Bienvenue OJ. Family response to critical illness: Postintensive care syndrome–family. Crit Care Med 2012 Vol. 40, No. 2, 618-24

Desai, Law & Needham. Long-term complications of critical care. Crit Care Med 2011 (39) 2: 371-379

Needham et al. Improving long-term outcomes after discharge from intensive care unit: Report from a stakeholders’ conference. Crit Care Med 2012 Vol. 40, No. 2. 502-509

Hough CL, Herridge MS. Long-term outcome after acute lung injury. Curr Opin Crit Care. 2012

Jones C. What’s new on the post-ICU burden for patients and relatives? Intensive Care Med (2013) 39:1832–1835.

Parker A, Sricharoenchai T, Needham DM. Early Rehabilitation in the Intensive Care Unit: Preventing Physical and Mental Health Impairments. Curr Phys Med Rehabil Rep. 2013 Dec;1(4):307-314.

Jones C. Recovery post ICU. Intensive Crit Care Nurs. 2014 Oct;30(5):239-45.

Karnatovskaia LV, Johnson MM, Benzo RP, Gajic O. The spectrum of psychocognitive morbidity in the critically ill: a review of the literature and call for improvement. J Crit Care. 2015 Feb;30(1):130-7.

Davies H, McKenzie N, Williams TA, Leslie GD, McConigley R, Dobb GJ, Aoun SM. Challenges during long-term follow-up of ICU patients with and without chronic disease. Aust Crit Care. 2015 May 1.

Pattison N, O'Gara G, Rattray J. After critical care: Patient support after critical care. A mixed method longitudinal study using email interviews and questionnaires. Intensive Crit Care Nurs. 2015 Mar 3.

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 Jun;43(6):1205-12.

Quasim, T., Brown, J., Kinsella, J. (2015). Employment, social dependency and return to work after intensive care. Journal of the Intensive Care Society 16 (1) 31-36.

Ahlberg M, Bäckman C, Jones C, Walther S, Hollman Frisman G. (2015). Moving on in life after intensive care - partners' experience of group communication. Nurs Crit Care. May 29.

Jensen JF, Thomsen T, Overgaard D, Bestle MH, Christensen D, Egerod I. Impact of follow-up consultations for ICU survivors on post-ICU syndrome: a systematic review and meta-analysis. Intensive Care Med. 2015 May;41(5):763-75.

Aitken LM, Castillo MI, Ullman A, Engström Å, Cunningham K, Rattray J. What is the relationship between elements of ICU treatment and memories after discharge in adult ICU survivors? Aust Crit Care. 2016 Feb;29(1):5-14.

Mikkelsen ME, Jackson JC, Hopkins RO, Thompson C, Andrews A, Netzer G, Bates DM, Bunnell AE, Christie LM, Greenberg SB, Lamas DJ, Sevin CM, Weinhouse G, Iwashyna TJ. Peer Support as a Novel Strategy to Mitigate Post-Intensive Care Syndrome. AACN Adv Crit Care. 2016 Apr-Jun;27(2):221-9

Lasiter S, Oles SK, Mundell J, London S, Khan B. Critical Care Follow-up Clinics: A Scoping Review of Interventions and Outcomes. Clin Nurse Spec. 2016 Jul-Aug;30(4):227-237.


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Griffiths RD, Jones C (eds). Intensive Care Aftercare. Oxford: Butterworth-Heinemann 2002.

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Bienvenu OJ, Jones C and Hopkins RO. Psychological and cognitive impact of critical illness. Oxford University press: Oxford, New York 2017.