To become critically ill and be cared for in an intensive care unit means being in a state of vulnerability and experiencing emotional strain in the long-term, impacting not only the patient’s health and well-being but also that of the whole family. Although patients and family members use different strategies to manage the process, this could both separate and bring them closer together. After discharge from the ICU, a long-term strenuous journey begins by processing the traumatic event and often having to adapt to new conditions.
Furthermore, the patient’s return home is a critical point within the family, and strategies used could both support and have a negative impact on the family and everyone’s well-being.
Strategies used to strengthen this process include: maintaining hope, regaining or preserving autonomy, finding explanations, seeking and getting social support, engaging in pleasure and relaxing activities and humour. Trust in other individuals facilitates this process.
There are previous studies that theoretically explain the process that patients and family members undergo from the time when the patient becomes critically ill until
recovery/everyday life at home (81, 107-110, 152, 156, 179, 180) or during the recovery (82).
40
However, our research contributes to an explanation of how different patterns of behaviours are intertwined
Intensive care patients and their families are a population in need of extended support from professionals. Both an individual and holistic view of patients’ and their families’ needs are required. For high quality intensive care and follow-up after intensive care, healthcare
professionals must be aware of the whole process from when the patient becomes critically ill until recovery at home, for both patients and their families.
9 CLINICAL IMPLICATIONS
Intensive care means treatment of a critically ill patient, but it also means caring for and supporting a whole family. Due to different experiences of the same event, how one processes such an event and their needs during the event differ from each other. Intensive care is not only care in the ICU, but it is also a long-lasting process in which patterns of behaviours are influenced by each other. The findings in this thesis add knowledge about experiences and patterns of behaviours used during the whole process from the time of critical illness until recovery/everyday life at home, for patients and their families.
In intensive care, this knowledge could be used by healthcare professionals to better support the whole family during the ICU stay and to prepare them for the next transition in the process, with a change in the level of care and home coming.
Awareness of the whole process and strengthening strategies could result in a better
understanding of and response to patients and their families’ needs in the general ward, which could also prepare them better for home coming.
During follow-up, this thesis could be used as a basis for interventions that are targeted for the whole family, which could make it easier for members of the family to support each other but also take care of themselves.
The results in this thesis could also be used by healthcare professionals to identify persons with an increased need for support.
Moreover, patients and their relatives could use this thesis to get an awareness of common experiences and patterns of behaviours. Awareness increases a sense of control, which could help them to process this traumatic event.
10 FUTURE RESEARCH
It can be of value to capture persons at risk, both patients and family members. There seems to be patterns of behaviours that increase the risk for a worse outcome. Perhaps personality and lack of social support from family and friends could indicate who might be at a higher risk of facing adversities. This could be a future perspective for research.
Critical illness is a traumatic experience for all involved as well as a long-lasting process. It is interesting that some individuals with major changes in their life are able to find new
opportunities, and others with minor changes have difficultly to move forward and become stuck in the ruminating stage. By learning from them, we might be able to find those who are at higher risk of facing adversities. More research on persons that manage the process in a healthy way could indicate useful strategies and interventions for well-being.
The discharge from the intensive care unit to the general ward is a difficult adjustment especially for family members. There seems to be a lack of knowledge on what type of information and support patients and family members need before transition to the general ward. Additionally, there is a lack of knowledge on how healthcare professionals in the general ward could support and inform family members and patients to alleviate their burdens. Hence, more research is needed in this area.
There seems to be a lack of knowledge on patients and their families regarding realistic expectations when coming home after critical illness. By gaining information from them, interventions based on their needs could be improved.
11 ACKNOWLEDGEMENTS
First, I would like to express special gratitude to all patients and family members who participated in all my studies. Thank you for your openness and for sharing your traumatic experiences with me. I hope I can give you all something back through this thesis.
Eva Joelsson-Alm, my main supervisor and colleague since 2004, at the Intensive Care unit, Södersjukhuset, and the first intensive care nurse who received a PhD at the Department of Anaesthesia and Intensive Care unit. Thank you for supporting me to become a doctoral student and offering to be my principal supervisor. You have always been so supportive, patient, and optimistic. You have always been there and shared your experiences and knowledge in a positive way. I am so grateful for all your support, encouragement, and advice. Thank you for sharing this journey with me.
Anna Sandgren, I am so grateful that you accepted to be my co-supervisor and guided me through ‘doing classic grounded theory’. This part of the thesis has been very confusing and difficult for me, but you guided me through this with your wisdom and patience. Thank you for all the hours of discussions and feedback during the analyses. Thank you also for your supportive and positive attitude.
Ulla Forinder, my co-supervisor, and former teacher from a course in Psychological Crisis management. Thank you for accepting to be my co-supervisor and contributing to this thesis with your solid knowledge and views from another research area. Thank you for all your wisdom and for sharing it with me.
Christer Svensén, my co-supervisor, former colleague and Professor at my Department.
Thank you for your brilliant advices, support in the research process and for sharing your solid experiences of research with me.
To the Head of the Department of Anaesthesia and Intensive Care, Södersjukhuset, Marie Fahlgren Brodin, former Head of the Department Anne Kierkegaard and Research group leader Maria Cronhjort, thank you for making it possible for me to do this postgraduate education, combined with clinical work.
To all follow-up clinics and intensive care units that helped to provide access to participants during my research project, thank you.
To Katarina Meijers and Mikael Wiklund, who started the follow-up clinic at ICU, Södersjukhuset. Thank you for providing me data for my first study.
To all my former and present managers at the Intensive Care Unit at Södersjukhuset, Eva-Marie Rundgren, Thorleif Rosander, Martin Karlsson, Carolina Pernsköld, Anna Kewenter-Hedencrona, Malin Ericsson and Emma Lidholm thank you for your positive spirit, support and for giving me the opportunity to carry this through.
44
To all my current and former colleagues at the Intensive Care Unit, Södersjukhuset. You are fantastic and do great work every day. We have really been tested during the last year, but you always behave professionally and do your best for everyone, including patients, family members and colleagues. I am so proud to be a part of this team. And special thanks for your benevolence and laughs, even during the toughest periods.
To the secretaries at the Department of Anaesthesia and Intensive Care unit, Södersjukhuset, Patrizia Pierazzi-Engvall and Maria Moberg, thank you for supporting me with both practical and administrative tasks.
Thank you to my colleagues at the Research Department, Södersjukhuset. Especially, thanks to the Head of Department Fuad Barham, Viveca Nilsson, Hans Pettersson (statistician) and Lina Benson (statistician) for your support during this journey.
To my doctoral student colleagues during the years (some of you are PhDs now) Ulrika, Sara F, Andrea, Helen, Cecilia, Sara H, thank you for inspiring me and all the laughs and talks about life.
Patrik Lyngå and Katarina Bohm at the Department of Clinical Science and Education, Södersjukhuset, thank you for the teamwork with nursing students and for your support to me as experienced researchers.
Ankie Eldh, through our collaboration at CRU, Karolinska Institutet, you have contributed to this thesis; you aroused my interest in research and supported me in becoming a doctoral student, thank you.
To all my friends that have given me other valuable perspectives in life, Ulrika and Sven, Tung and Ivonne and ‘the boys’, Kicki, Majsan, Inger, Patricia with family, Larre, Gårdh family, Mikaela and Lelle with family, David, Daniel, “tjej gänget”; Irene, Åsa W, Eva, Åsa, Pia, Cecilia and Maria, ‘Brygg-gänget at Risholmen’ and Martin. Thank you all, you give me a breath of space and inspiration.
To my childhood friend and mentor, Professor Eva Hultin, thank you for all the good advice and for being a great role model.
To my cousins: brothers Andersson: Michael, Torbjörn and Håkan and your respective families; we have followed each other throughout our lives, which is invaluable.
My mother Ulla, you have always cared about everyone’s best and taught me to appreciate small joys in life and the most valuable in life, human beings. Thank you for being a role model for goodness.
My father Klaus, you are not here with me today, but I know you would have been proud today. You taught me to be a stubborn fighter. Marie-Louise, my father’s wife, thank you for your wisdom and for always being my friend.
My sister Gunilla, thank you for that we have been struggling together through life I am so proud of you and your creativity. To Anders, I am so happy that you are a part of our family.
Finally, to the most important persons in my life, my children Mattias and Tobias. You are the best thing that ever happened to me and always will be. I am so grateful to be your mother. During the last year, I became a grandmother to you, Wilma; you make me so happy. From now on, we shall eat ‘kaka’ together, and the birds only get small crumbs.
Thank you Izabel, mother to Wilma, I am so happy that you are a part of our family. With you, the family Bergman came into my life. I am so grateful to be a part of this warm-hearted family. You all together give me so much energy.
The project was supported by grants from:
The Swedish Red Cross Home Foundation
The National Society of Anaesthesia and Intensive Care in Sweden (AnIva) Nordic Association for Intensive Care Nursing Research (NOFI)
12 REFERENCES
1. Kompetensbeskrivning för sjusksköterskor inom intensivvård.
Kompetensbeskrivning för sjuksköterskor inom intensivvård | Svensk sjuksköterskeförening (swenurse.se) [cited 2021 Oct 11].
2. Svenskt intensivvårdsregister (SIR) Rapporter 2020.
https://portal.icuregswe.org/utdata/sv/report/demo.antalvtf2020 (cited 2021 Oct 18) 3. World Health Organization(WHO). Definition of Health.
https://www.publichealth.com.ng/world-health-organizationwho-definition-of-health/#:~:text=World%20Health%20Organization%20%28WHO%29%20Definition%20Of
%20Health%20World,not%20merely%20the%20absence%20of%20disease%20or%20infirm ity.2021 (cited 2021 Oct 25)
4. Kiefer RA. An integrative review of the concept of well-being. Holistic Nursing Practice. 2008;22(5):244-52; quiz 53-4.
5. Kotfis K, Marra A, Ely EW. ICU delirium - a diagnostic and therapeutic challenge in the intensive care unit. Anaesthesiology intensive therapy. 2018;50(2):160-7.
6. Ely EW, Shintani A, Truman B, Speroff T, Gordon SM, Harrell FE, Jr., et al.
Delirium as a predictor of mortality in mechanically ventilated patients in the intensive care unit. Jama. 2004;291(14):1753-62.
7. Krewulak KD, Stelfox HT, Ely EW, Fiest KM. Risk factors and outcomes among delirium subtypes in adult ICUs: A systematic review. Journal of critical care.
2020;56:257-64.
8. Barr J, Fraser GL, Puntillo K, Ely EW, Gélinas C, Dasta JF, et al. Clinical practice guidelines for the management of pain, agitation, and delirium in adult patients in the intensive care unit. Critical care medicine. 2013;41(1):263-306.
9. Hayhurst CJ, Pandharipande PP, Hughes CG. Intensive Care Unit Delirium: A Review of Diagnosis, Prevention, and Treatment. Anesthesiology. 2016;125(6):1229-41.
10. Slooter AJ, Van De Leur RR, Zaal IJ. Delirium in critically ill patients.
Handbook of clinical neurology. 2017;141:449-66.
11. Langan C, Sarode DP, Russ TC, Shenkin SD, Carson A, Maclullich AMJ.
Psychiatric symptomatology after delirium: a systematic review. Psychogeriatrics.
2017;17(5):327-35.
12. Wolters AE, van Dijk D, Pasma W, Cremer OL, Looije MF, de Lange DW, et al. Long-term outcome of delirium during intensive care unit stay in survivors of critical illness: a prospective cohort study. Critical care (London, England). 2014;18(3):R125.
13. Svenningsen H, Tonnesen EK, Videbech P, Frydenberg M, Christensen D, Egerod I. Intensive care delirium - effect on memories and health-related quality of life - a follow-up study. Journal of clinical nursing. 2014;23(5-6):634-44.
48
14. Fan E, Cheek F, Chlan L, Gosselink R, Hart N, Herridge MS, et al. An official American Thoracic Society Clinical Practice guideline: the diagnosis of intensive care unit-acquired weakness in adults. American Journal of Respiratory and Critical Care Medicine.
2014;190(12):1437-46.
15. Stevens RD, Marshall SA, Cornblath DR, Hoke A, Needham DM, de Jonghe B, et al. A framework for diagnosing and classifying intensive care unit-acquired weakness.
Critical care medicine. 2009;37(10 Suppl):S299-308.
16. Kress JP, Hall JB. ICU-acquired weakness and recovery from critical illness.
The New England Journal of Medicine. 2014;370(17):1626-35.
17. Vanhorebeek I, Latronico N, Van den Berghe G. ICU-acquired weakness.
Intensive care medicine. 2020;46(4):637-53.
18. Mart MF, Pun BT, Pandharipande P, Jackson JC, Ely EW. ICU Survivorship-The Relationship of Delirium, Sedation, Dementia, and Acquired Weakness. Critical care medicine. 2021;49(8):1227-40.
19. Jolley SE, Bunnell AE, Hough CL. ICU-Acquired Weakness. Chest.
2016;150(5):1129-40.
20. Appleton RT, Kinsella J, Quasim T. The incidence of intensive care unit-acquired weakness syndromes: A systematic review. Journal of Intensive Care Society.
2015;16(2):126-36.
21. Devlin JW, Skrobik Y, Gélinas C, Needham DM, Slooter AJC, Pandharipande PP, et al. Clinical Practice Guidelines for the Prevention and Management of Pain,
Agitation/Sedation, Delirium, Immobility, and Sleep Disruption in Adult Patients in the ICU.
Critical care medicine. 2018;46(9):e825-e73.
22. Puntillo KA, Max A, Timsit JF, Ruckly S, Chanques G, Robleda G, et al. Pain distress: the negative emotion associated with procedures in ICU patients. Intensive care medicine. 2018;44(9):1493-501.
23. Hylén M, Akerman E, Idvall E, Alm-Roijer C. Patients´ experiences of pain in the intensive care - The delicate balance of control. Journal of advanced nursing.
2020;76(10):2660-9.
24. Ayasrah S. Care-related pain in critically ill mechanically ventilated patients.
Anaesth Intensive Care. 2016;44(4):458-65.
25. Hermes C, Acevedo-Nuevo M, Berry A, Kjellgren T, Negro A, Massarotto P.
Gaps in pain, agitation and delirium management in intensive care: Outputs from a nurse workshop. Intensive & critical care nursing : the official journal of the British Association of Critical Care Nurses. 2018;48:52-60.
26. Meriläinen M, Kyngäs H, Ala-Kokko T. Patients' interactions in an intensive care unit and their memories of intensive care: a mixed method study. Intensive & critical care nursing : the official journal of the British Association of Critical Care Nurses.
2013;29(2):78-87.
27. Fukuda T, Kinoshita Y, Shirahama T, Miyazaki S, Watanabe N, Misawa T.
Distorted Memories and Related Factors in ICU Patients. Clinical Nursing Research.
2020:1054773820980162.
28. Delaney L, Litton E, Van Haren F. The effectiveness of noise interventions in the ICU. Current Opinion in Anaesthesiology. 2019;32(2):144-9.
29. Elliott R, McKinley S, Cistulli P, Fien M. Characterisation of sleep in intensive care using 24-hour polysomnography: an observational study. Critical care (London,
England). 2013;17(2):R46.
30. Pisani MA, Friese RS, Gehlbach BK, Schwab RJ, Weinhouse GL, Jones SF.
Sleep in the intensive care unit. American Journal of Respiratory and Critical Care Medicine.
2015;191(7):731-8.
31. Kamdar BB, Niessen T, Colantuoni E, King LM, Neufeld KJ, Bienvenu OJ, et al. Delirium transitions in the medical ICU: exploring the role of sleep quality and other factors. Critical care medicine. 2015;43(1):135-41.
32. Flaatten H. Mental and physical disorders after ICU discharge. Current opinion in critical care. 2010;16(5):510-5.
33. Gerth AMJ, Hatch RA, Young JD, Watkinson PJ. Changes in health-related quality of life after discharge from an intensive care unit: a systematic review. Anaesthesia.
2019;74(1):100-8.
34. Bowling A. The concept of quality of life in relation to health. Medicina nei secoli. 1995;7(3):633-45.
35. Soliman IW, de Lange DW, Peelen LM, Cremer OL, Slooter AJ, Pasma W, et al. Single-center large-cohort study into quality of life in Dutch intensive care unit subgroups, 1 year after admission, using EuroQoL EQ-6D-3L. Journal of critical care. 2015;30(1):181-6.
36. Das Neves AV, Vasquez DN, Loudet CI, Intile D, Sáenz MG, Marchena C, et al. Symptom burden and health-related quality of life among intensive care unit survivors in Argentina: A prospective cohort study. Journal of critical care. 2015;30(5):1049-54.
37. Oeyen SG, Vandijck DM, Benoit DD, Annemans L, Decruyenaere JM. Quality of life after intensive care: a systematic review of the literature. Critical care medicine.
2010;38(12):2386-400.
38. Orwelius L, Nordlund A, Edell-Gustafsson U, Simonsson E, Nordlund P, Kristenson M, et al. Role of preexisting disease in patients' perceptions of health-related quality of life after intensive care. Critical care medicine. 2005;33(7):1557-64.
39. Bäckman CG, Orwelius L, Sjöberg F, Fredrikson M, Walther SM. Long-term effect of the ICU-diary concept on quality of life after critical illness. Acta anaesthesiologica Scandinavica. 2010;54(6):736-43.
40. Orwelius L, Teixeira-Pinto A, Lobo C, Costa-Pereira A, Granja C. The role of memories on health-related quality of life after intensive care unit care: an unforgettable controversy? Patient Related Outcome Measures. 2016;7:63-71.
41. Granja C, Lopes A, Moreira S, Dias C, Costa-Pereira A, Carneiro A. Patients' recollections of experiences in the intensive care unit may affect their quality of life. Critical care (London, England). 2005;9(2):R96-109.
42. Ringdal M, Plos K, Lundberg D, Johansson L, Bergbom I. Outcome after injury: memories, health-related quality of life, anxiety, and symptoms of depression after intensive care. Journal of Trauma. 2009;66(4):1226-33.
43. Ringdal M, Plos K, Ortenwall P, Bergbom I. Memories and health-related quality of life after intensive care: a follow-up study. Critical care medicine. 2010;38(1):38-44.
50
44. 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. Critical care medicine. 2012;40(2):502-9.
45. Inoue S, Hatakeyama J, Kondo Y, Hifumi T, Sakuramoto H, Kawasaki T, et al.
Post-intensive care syndrome: its pathophysiology, prevention, and future directions. Acute Medicine and Surgery. 2019;6(3):233-46.
46. Rawal G, Yadav S, Kumar R. Post-intensive Care Syndrome: an Overview.
Journal of Translational Internal Medicine. 2017;5(2):90-2.
47. Svenningsen H, Langhorn L, Agard AS, Dreyer P. Post-ICU symptoms, consequences, and follow-up: an integrative review. Nursing in critical care. 2017;22(4):212-20.
48. Desai SV, Law TJ, Needham DM. Long-term complications of critical care.
Critical care medicine. 2011;39(2):371-9.
49. Harvey MA, Davidson JE. Postintensive Care Syndrome: Right Care, Right Now…and Later. Critical care medicine. 2016;44(2):381-5.
50. Lee M, Kang J, Jeong YJ. Risk factors for post-intensive care syndrome: A systematic review and meta-analysis. Australian critical care : official journal of the Confederation of Australian Critical Care Nurses. 2020;33(3):287-94.
51. Yuan C, Timmins F, Thompson DR. Post-intensive care syndrome: A concept analysis. International Journal of Nursing Studies. 2021;114:103814.
52. Morgan A. Long-term outcomes from critical care. Surgery (Oxf).
2021;39(1):53-7.
53. Nikayin S, Rabiee A, Hashem MD, Huang M, Bienvenu OJ, Turnbull AE, et al.
Anxiety symptoms in survivors of critical illness: a systematic review and meta-analysis.
General hospital psychiatry. 2016;43:23-9.
54. Myhren H, Ekeberg O, Tøien K, Karlsson S, Stokland O. Posttraumatic stress, anxiety and depression symptoms in patients during the first year post intensive care unit discharge. Critical care (London, England). 2010;14(1):R14.
55. Wade D, Hardy R, Howell D, Mythen M. Identifying clinical and acute psychological risk factors for PTSD after critical care: a systematic review. Minerva anestesiologica. 2013;79(8):944-63.
56. Association AP. Diagnostic and statistical manual of mental disorders (5th ed.) appi.books.9780890425596; 2013.
57. Askari Hosseini SM, Arab M, Karzari Z, Razban F. Post-traumatic stress disorder in critical illness survivors and its relation to memories of ICU. Nursing in critical care. 2021;26(2):102-8.
58. Wade DM, Brewin CR, Howell DC, White E, Mythen MG, Weinman JA.
Intrusive memories of hallucinations and delusions in traumatized intensive care patients: An interview study. British journal of health psychology. 2015;20(3):613-31.
59. Jones C, Griffiths RD, Humphris G, Skirrow PM. Memory, delusions, and the development of acute posttraumatic stress disorder-related symptoms after intensive care.
Critical care medicine. 2001;29(3):573-80.