CONSTRUCTING THE ILLNESS NARRATIVE: AN INTERNATIONAL PERSPECTIVE ON ICU DIARIES. Ingrid Egerod, Ph.d.

Transcription

1 CONSTRUCTING THE ILLNESS NARRATIVE: AN INTERNATIONAL PERSPECTIVE ON ICU DIARIES Ingrid Egerod, Ph.d.

2 ICU diaries the concept 2 A Critical Care nursing invention A Critical Care nursing intervention A low-cost, low-tech therapy

3 ICU diary: Waking up 3 Things are looking better. We re thinking of removing the tube from your throat, so you can breathe on your own. You are still sleeping too deeply, so it will have to wait till you are more awake - probably in the next day or so. I have shut off your sleeping medication and you are already wincing. You are trying to open your eyes and move your arms a little Sincerely Susan.

4 Characteristics of ICU diaries 4 What are ICU diaries? Where did ICU diaries start? How are ICU diaries kept (author)? How are ICU diaries used (reader)? What is the effect of ICU diaries? What are the benefits of ICU diaries?

5 What are ICU diaries? 5 ICU diaries are journals kept by nurses, hospital staff, or family members while the patient is in ICU. ICU diaries are written in everyday language and supported by pictures of the patient.

6 ICU diary: Breathing and talking 6 You are still very tired, but more awake than yesterday. Awake enough to become very irritated with the tube. We took this as a sign that you could do without the tube and removed it this morning a big step in the right direction! It s great to see you without that tube and to hear you talk. It s still only a whisper, but it s talking! Sincerely, Cathy.

7 How did it start? 7 ICU diaries started around 1990 in Denmark, Norway, and Sweden to help patients understand what happened in ICU. Egerod I, KH Schwartz-Nielsen, GM Hansen and E Laerkner The extent and application of patient diaries in Danish ICUs in Nursing in Critical Care 12: Akerman E, A Granberg-Axell, A Ersson, B Fridlund and I Bergbom Use and practice of patient diaries in Swedish intensive care units: a national survey. Nursing in Critical Care 15: Gjengedal E, SL Storli, A Holme, R Eskerud An act of caring - patient diaries in Norwegian intensive care units. Nursing in Critical Care 15:

8 How did it start? 8 Several schools of thought inspired ICU diaries Diaries as a therapeutic instrument (crisis and coping) Diaries as an act of caring (existence and meaning) Diaries as an expression of empathy (acknowledgment) Egerod I, Storli SL, Åkerman E. Intensive care patient diaries in Scandinavia: a comparative study of emergence and evolution. Nurs Inquiry 2011.

9 Schools of thought 9 Diaries as a therapeutic instrument (crisis, coping, fact, reorientation) Cullberg and Lazarus Diaries as an act of caring (existence, meaning, wonder) Martinsen and van Manen Diaries as an expression of empathy (acknowledgment, humanism) Buber

10 ICU diaries have many names 10 Diaries kept by nurses (Bergbom et al. 1999) Personal diary (Bäckman & Walther 2001) Patient diaries (Combe 2005, Storli et al. 2003) Photo diaries (Bäckman & Walther 2005) Prospective patient diaries (Knowles & Tarrier 2009) Intensive care diaries (Jones et al. 2010) ICU-diary concept (Bäckman et al. 2010)

11 Extent in Nordic Countries 11 Country Inhabitants in millions Number of ICUs ICUs using diaries n (%) Years Median (range) Denmark (40%) 5 (1-18) Norway (44%) 7 (1-18) Sweden (76%) 7 (1-18)

12 How are ICU diaries kept? 12 How are ICU diaries kept and how do they differ from the hospital chart? Egerod I, Christensen D. Analysis of patient diaries in Danish ICU's: A narrative approach. Intensive and Critical Care Nursing 2009;25(5): Egerod I, Christensen D. A Comparative Study of ICU Patient Diaries vs. Hospital Charts. Qualitative Health Research 2010;22(10):

13 Anatomy of ICU diaries 13 SAMPLE DIARY ENTRY SUB-ENTRY Embedded-level Overview Summary (first entry) Greeting Patient status Neuro status Patients Nurses Diaries Trajectories Reason for admission Entries (daily entry) Establish relationship Patient status Neuro Respiratory Circulatory Sedated (not awake) Waking (not sedated) Daily events End-note (final entry) Status at discharge Family status Contextual cues Sign-off Encouragement Abdominal Kidneys Mobility Emotion Awake (confused) Awake (oriented)

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15 ICU diaries vs. Hospital charts 15 The ICU diary is coherent, personal, and supportive, whereas the hospital chart is fragmented, impersonal, and technical. The diary tells a comprehensive story that might help the patients construct or reconstruct their illness narrative. Egerod I, Christensen D. A Comparative Study of ICU Patient Diaries vs. Hospital Charts. Qualitative Health Research 2010;22(10):

16 Narrative structure in ICU diaries 16 Narrative research (Creswell 2007) Chronology and crisis Beginning, middle, end Time, place, plot, scene

17 Structure of illness narratives 17 Illness narratives basic plots (Frank1995) Restitution: I was healthy, I am sick, I will be healthy Chaos: Life will never get better Quest: Meaning of illness

18 The Illness Narrative in context 18 ICU-trajectory 3 4 Hospitalization Onset 2 5 Recovery Illness Trajectory Relatively good health 1 Illness Narrative Life span, personal biography 6 Relatively good health

19 Emplotment in ICU diaries 19 Crisis: Critical illness, life and death Turning point: Waking up, breathing Normalization: Sitting, Standing, Walking

20 Emplotment in ICU diaries 20 Stages of narrative Parallel plots Nurse's storyline Patient's storyline Family's storyline Crisis Active; Focus on technology Passive; Depersonalized Spectating; Worried Turning Point Active; Focus on caring Emerging; Repersonalized Engaging; Relief and gratitude Normalization Converging plots Relating, participating, connecting, letting go

21 How are diaries used? 21 ICU diaries are written during critical illness (front end) and used in ICU rehabilitation (back end). Rehabilitative initiatives include: ICU diary Step-down unit (ICU nurse visit) Physiotherapy and lung function test Follow-up or outpatient clinic Drop-in support group (ICU-Steps) Peskett M, Gibb P. Developing and setting up a patient and relatives intensive care support group. Nurs Crit Care 2009;14(1):4-10. Jones C et al. Rehabilitation after critical illness: a randomized, controlled trial. Crit Care Med 2003;31(10):

22 What is the effect of ICU diaries? 22 Diaries reduce anxiety & depression The ICU diary is designed to help patients understand what happened to them in intensive care and has a significant positive impact on anxiety and depression at about 2 months after ICU discharge. Knowles RE, Tarrier N: Evaluation of the effect of prospective patient diaries on emotional well-being in intensive care unit survivors: a randomized controlled trial. Crit Care Med 2009; 37:

23 What is the effect of ICU diaries? 23 Diaries reduce posttraumatic stress disorder, PTSD The ICU diary is effective in aiding psychological recovery and reducing the incidence of new PTSD three months after ICU discharge. Jones C, Backman C, Capuzzo M, Egerod I, Flaatten H, Granja C, Rylander C, Griffiths R: Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: a randomised, controlled trial. Crit Care 2010;14:R168.

24 What is the effect of ICU diaries? 24 Diaries improve Quality of Life The ICU-diary is associated with improved healthrelated QoL during a 3-year follow-up period after critical illness. Backman CG, Orwelius L, Sjoberg F, Fredrikson M, Walther SM. Long-term effect of the ICU-diary concept on quality of life after critical illness. Acta Anaesthesiol Scand 2010;54(6):

25 What are the down-sides? 25 Lack of evidence Lack on consistency Lack of systematic follow-up Lack of safety studies (potential harm?) Not useful to all patients

26 What are the benefits of diaries? 26 Diaries facilitate sharing with the family Sharing the story Sharing the presence Sharing feelings Sharing through support Roulin MJ, Hurst S, Spirig R: Diaries written for ICU patients. Qual Health Res 2007;17:

27 What are the benefits of diaries? 27 Diaries help patients in their search for meaning with their experiences and memories. Diaries enable post-icu reflection by providing guideposts for discussion during follow-up; patients need to tell their story. Storli SL, Lind R. The meaning of follow-up in intensive care: patients perspective. Scand J Caring Sci; 2009; 23;

28 What are the benefits of diaries? 28 ICU diaries are useful to patients and relatives. Patients need to construct their illness narrative, and diaries are among the sources they use. Patients combine various sources of information in a process of information acquisition, narration, and evolving insight progressing toward recovery.

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