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The photo-diary and follow-up appointment on the ICU: Giving back the time to patients and relatives.: A descriptive and interventional study
Linköping University, Department of Clinical and Experimental Medicine. Linköping University, Faculty of Health Sciences.
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Patients on the ICU often spend a great deal of their time either unconscious or heavily sedated. When they return from the zone between life and death they are often in a state of confusion where dreams and delusions are intertwined with reality and it is not always easy to distinguish them apart. These experiences could lead to psychological problems and post-traumatic stress disorder (PTSD). Recovery may be improved by filling in the significant memory gaps and explaining what really happened during the “chaotic” time on the ICU. The provision of a diary describing the patients’ stay in ICU on a day to day basis and a follow-up meeting (together named the ICU-diary concept), may help the whole family to understand.

Aim: The principal aim of this thesis was to see if the ICU-diary concept was of help to patients and relatives in the recovery after critical illness. A further aim was to look for precipitants in the ICU of PTSD.

Material and Methods: ICU patients in a handful of European countries and their relatives have been studied. The studies have been single and multi-centred and we have used descriptive observational, randomised controlled and cohort study designs, including matched case-control designs. Quantitative methods have been used with questionnaires and structured interviews using established instruments (i.e Post-traumatic stress syndrome screening-14, Post-traumatic diagnostic scale, ICU memory tool, Short Form-36, Pearlin-Schooler Mastery Scale, Hopelessness scale) as the principal means of data collection.

Results: The ICU-diary concept was seen to be a positive and useful aid in helping patients and their relatives understand the events that took place during the time on the ICU. It also decreased the risk for PTSD among patients and relatives. Patients that were supported with the ICU-diary concept perceived a better health-related quality of life even 3 years after the ICU stay. We did not find any definite improvement by the ICU-diary concept in mastery and hope. Variations in how the patients were cared for in the ICU had a significant effect on the development of PTSD. The implementation of an ICU diary, for instance, was associated with a lower frequency of PTSD.

Conclusions: The ICU-diary concept was found helpful by patients and their relatives. It was associated with a reduction in new onset PTSD and improved health-related quality of life. The results are encouraging and suggest that an ICU diary may represent an important first step to help patients and relatives come to terms with their experiences during critical illness.ISBN 978-

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2011. , 44 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1259
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-70485ISBN: 978-91-7393-076-5 (print)OAI: oai:DiVA.org:liu-70485DiVA: diva2:439873
Public defence
2011-09-30, Fornborgen, Vrinnevisjukhuset, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2011-09-09 Created: 2011-09-09 Last updated: 2012-06-20Bibliographically approved
List of papers
1. Use of a personal diary written on the ICU during critical illness
Open this publication in new window or tab >>Use of a personal diary written on the ICU during critical illness
2001 (English)In: Intensive Care Medicine, ISSN 0342-4642, E-ISSN 1432-1238, Vol. 27, no 2, 426-9 p.Article in journal (Refereed) Published
Abstract [en]

Objective: To explore the use of a diary as an aid in debriefing patients and relatives following critical illness. Design: Observation study. Setting: Intensive care unit of a 500-bed hospital. Patients and participants: Fifty-one critically ill patients and their relatives. Method: A daily account of the patient's progress was written in everyday language by nursing staff, photographs were added as necessary. The booklet was given to the patient or a relative at a follow-up appointment 2 weeks after discharge from the unit. A standard questionnaire was mailed 6 months later, responses were analyzed by an independent observer. Measurements and results: All diaries had been read by survivors (n=41) or relatives (n=10), 51% of the diaries had been read more than 10 times. Comments in the questionnaires were graded as very positive (39%), positive (28%) and neutral (33%). Conclusions: A detailed narrative of the patient's stay is a useful tool in the debriefing process following intensive care.

Place, publisher, year, edition, pages
SpringerLink, 2001
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-70479 (URN)10.1007/s001340000692 (DOI)11396288 (PubMedID)
Available from: 2011-09-09 Created: 2011-09-09 Last updated: 2017-12-08Bibliographically approved
2. Precipitants of post-traumatic stress disorder following intensive care: a hypothesis generating study of diversity in care
Open this publication in new window or tab >>Precipitants of post-traumatic stress disorder following intensive care: a hypothesis generating study of diversity in care
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2007 (English)In: Intensive Care Medicine, ISSN 0342-4642, E-ISSN 1432-1238, Vol. 33, no 6, 978-85 p.Article in journal (Refereed) Published
Abstract [en]

The development of PTSD following critical illness is associated with a number of different precipitating factors that are in part related to how patients are cared for within intensive care. This study raises the hypothesis that the impact of care within the ICU has an impact on subsequent psychological morbidity and therefore must be assessed in future studies looking at the way patients are sedated in the ICU and how physical restraint is used.

Keyword
ICU · Critical illness · Delusional memories · Physical restraint · PTSD
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-70480 (URN)10.1007/s00134-007-0600-8 (DOI)17384929 (PubMedID)
Available from: 2011-09-09 Created: 2011-09-09 Last updated: 2017-12-08Bibliographically approved
3. Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: a randomised, controlled trial
Open this publication in new window or tab >>Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: a randomised, controlled trial
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2010 (English)In: Critical Care, ISSN 1364-8535, E-ISSN 1466-609X, Vol. 14, no 5, R168Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Patients recovering from critical illness have been shown to be at risk of developing Post Traumatic Stress disorder (PTSD). This study was to evaluate whether a prospectively collected diary of a patient's intensive care unit (ICU) stay when used during convalescence following critical illness will reduce the development of new onset PTSD.

METHODS: Intensive care patients with an ICU stay of more than 72 hours were recruited to a randomised controlled trial examining the effect of a diary outlining the details of the patients ICU stay on the development of acute PTSD. The intervention patients received their ICU diary at 1 month following critical care discharge and the final assessment of the development of acute PTSD was made at 3 months.

RESULTS: 352 patients were randomised to the study at 1 month. The incidence of new cases of PTSD was reduced in the intervention group compared to the control patients (5% versus 13%, P = 0.02).

CONCLUSIONS: The provision of an ICU diary is effective in aiding psychological recovery and reducing the incidence of new PTSD.

Place, publisher, year, edition, pages
BioMed Central, 2010
National Category
Anesthesiology and Intensive Care
Identifiers
urn:nbn:se:liu:diva-70481 (URN)10.1186/cc9260 (DOI)000284596500007 ()20843344 (PubMedID)
Note

RACHEL GROUP in addition to the authors: Denmark, Christensen D, Bogø I, Hansen R, Kjerrumgård H, Mathiasen L, Hyldested C, Toft C, Nordsjaelland Hospital; Bagger C, Larsen MB, Frank de Jong L, Odense University Hospital; Ågård AS, Knudsen K, Hinzel T, Århus University Hospital, Skejby; Italy, Scaramuzza A & Bertacchini S, Ferrara; Norway, Schou Landmark J, Salomonsen A, Tøien K, Walther S, Oslo University Hospital Ulleval; Muri AK, Haukeland University Hospital; Portugal, Neutel E, Gomes E, Cardoso T, Ferreira R, Machado C, Santos C, Pinto S, Hospital Santo António - Centro Hospitalar do Porto, Amaro A, Morujão E, Jerónimo A, Rodrigues T, Carvalho F, Silva A, Morais A Hospital Pedro Hispano; Sweden, Löwenmark U, Etemad W, Rosell E, Sahgrenska University Hospital; Carlson U, Wirbrand Holmquist A, Kungälv Hospital; Åkerman E, Ersson A, Malmö University Hospital; UK, Tobin C, Whiston.

Available from: 2011-09-09 Created: 2011-09-09 Last updated: 2017-12-08Bibliographically approved
4. Long-term effect of the ICU-diary concept on quality of life after critical illness
Open this publication in new window or tab >>Long-term effect of the ICU-diary concept on quality of life after critical illness
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2010 (English)In: ACTA ANAESTHESIOLOGICA SCANDINAVICA, ISSN 0001-5172, Vol. 54, no 6, 736-743 p.Article in journal (Refereed) Published
Abstract [en]

Background Critically ill patients often spend time in the intensive care unit (ICU) either unconscious or sedated. On recovery, they are often in a state of confusion with memory loss that may be associated with a longstanding reduction in health-related quality of life (QoL). We hypothesised that the ICU-diary concept could improve their QoL by filling in their memory gaps. Methods A non-randomised, prospective study in a non-academic eight-bedded general ICU. A group of patients (n=38) were selected to receive the ICU-diary concept (keeping a diary with photos while on the ICU plus a follow-up meeting) when a long and complicated course was expected. Health-related QoL at 6, 12, 24 and 36 months was compared with a group that did not receive the ICU-diary (n=224). The Medical Outcomes Study 36-Item Short-Form (SF-36) was used to measure health-related QoL. Multiple regression models adjusted for age, sex, illness severity, pre-existing disease and diagnostic category was used to analyse the effects of the ICU-diary concept at 6 months, and changes over time were analysed using repeated measures MANOVA. Results Crude and adjusted scores for two dimensions of SF-36 (general health and vitality) and the physical component summary score were significantly higher at 6 months in the ICU-diary group (P andlt; 0.05) and some of the effects remained during the 3-year follow-up period (P andlt; 0.05). Conclusion The ICU-diary concept was associated with improved health-related QoL during the 3-year follow-up period after a critical illness. The effect of this intervention needs to be confirmed in a larger randomised study.

Place, publisher, year, edition, pages
Blackwell Publishing Ltd, 2010
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-57425 (URN)10.1111/j.1399-6576.2010.02230.x (DOI)000278292400011 ()
Available from: 2010-06-18 Created: 2010-06-18 Last updated: 2012-03-13
5. Intensive care diaries and relatives' symptoms of posttraumatic stress disorder after critical illness: a pilot study
Open this publication in new window or tab >>Intensive care diaries and relatives' symptoms of posttraumatic stress disorder after critical illness: a pilot study
2012 (English)In: American Journal of Critical Care, ISSN 1062-3264, E-ISSN 1937-710X, Vol. 21, no 3, 172-176 p.Article in journal (Refereed) Published
Abstract [en]

Background: Relatives of patients recovering from critical illness have been shown to be at risk of developing Post Traumatic Stress disorder (PTSD).

Objectives: The primary aim of this pilot study was to test whether the provision of an ICU diary to the patient and their relatives reduced the level of PTSD-related symptoms in the close family members.

Methods: Observational study of close family members of Intensive care patients, with an Intensive Care Unit (ICU) stay of more than 72 hrs, recruited in two centres of a 12 centred randomised controlled trial examining the effect of a diary outlining the details of the patients ICU stay on the development of new onset PTSD on patients. The close family members of the patients were recruited to examine the additional effect of the provision of the patient diary on their PTSD-related symptoms.

Results 36 family members were recruited and 30 completed the study. Where the patient received their diary at 1 month the family members showed lower levels of PTSD-related symptoms (p=0.03) at the 3 month follow-up compared to the control relatives.

Conclusions: The provision of an ICU diary may be effective in aiding psychological recovery in families after critical illness.

Place, publisher, year, edition, pages
Aliso Viejo, CA, USA: American Association of Critical Care Nurses, 2012
Keyword
Families, critical illness, diaries, PTSD-related symptoms, memories, intervention, follow-up, rehabilitation
National Category
Anesthesiology and Intensive Care
Identifiers
urn:nbn:se:liu:diva-70482 (URN)10.4037/ajcc2012569 (DOI)000310641300011 ()22549573 (PubMedID)
Note

The article originial title before publishing on line was Intensive Care diaries reduce PTSD-related symptom levels in relatives following critical illness: a pilot study.

Available from: 2011-09-09 Created: 2011-09-09 Last updated: 2017-12-08Bibliographically approved
6. A case-control study of the influence of the ICU-diary concept on mastery and hopelessness six months after critical illness
Open this publication in new window or tab >>A case-control study of the influence of the ICU-diary concept on mastery and hopelessness six months after critical illness
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(English)Manuscript (preprint) (Other academic)
Abstract [en]

The ICU-diary concept is associated with less post-traumatic stress syndrome and improved perceived health-related quality-of-life (HRQoL) after critical illness, but little is known about its effect on the coping- mastery process, or whether it reduces hopelessness.

Objective: To see if the ICU-diary concept improves the patient’s ability to master his/her situation after critical illness, and if it reduces the feeling of hopelessness.

Design: Case control study (subgroup analysis of a multi-centre study on health-related quality-of-life (HRQoL).

Setting: Non-academic 8-bed general ICU.

Patients: Adults admitted between March 2002 and June 2004.

Measurements: Mastery and hopelessness were determined using validated questionnaires (the Mastery-Coping scale and a consolidated 2–item hopelessness questionnaire) which were sent home to patients 6 months after critical illness. Responses were compared between patients that received (Cases: n=38) or did not receive an ICU-diary (Controls: n=76) . Diaries were used when a long and complicated stay on the ICU was expected. Controls were matched with diary patients by gender and age. The effect of the ICU-diary was also examined using a multiple regression model.

Results: The ICU-diary concept group scored significantly higher than the No-diary group in mastery (22.1 vs. 20.4, P<0.05) and lower in hopelessness scores (1.3 vs. 1.6, P<0.05). The positive influence of the ICU-diary disappeared after adjustment for confounding factors in a multiple regression model.

Conclusion: We were unable to verify any positive influence of the ICU-diary concept on mastery and hopelessness 6 months after critical illness.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-70483 (URN)
Available from: 2011-09-09 Created: 2011-09-09 Last updated: 2011-09-09Bibliographically approved

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