Intensive care diaries for ICU survivors

1. Introduction

Version followed: the prospective ICU diary programme as Carl Bäckman and Christina Jones describe it from Norrköping (Sweden, programme started 1995) and Whiston (UK, started 2002) [source: Bäckman & Jones 2011], together with the delivery protocol of the multicentre RACHEL trial (Jones et al. 2010). The main variants named are the French ICU-Diary trial model, which had no patient photographs and minimal writing guidance (Garrouste-Orgeas et al. 2017 protocol; 2019 trial), and UK service guidelines (UK Defence Medical Services; St George's/Epsom & St Helier leaflet).

An ICU diary is not a psychotherapy. It is a nurse-led, multidisciplinary intervention. ICU staff, and relatives if they want to, write a dated, plain-language account of the patient's ICU stay while it happens, addressed directly to the patient. Photographs are often added. The diary is given to the survivor after discharge, ideally with a guided read-through and a follow-up meeting [source: Bäckman & Jones 2011; Aitken et al. 2013]. It has no single founder: Scandinavian units developed it during the 1990s, and the ICU Diary Network (founded 2012) links the units that use it [source: ICUsteps; uncertain on exact origins].

How change is thought to happen: sedation, delirium and critical illness leave survivors with memory gaps and with frightening delusional "memories", such as believing people were killed or harmed. These can blend with real events and keep anxiety going. A factual narrative from people who were there fills the gaps and lets the survivor check delusional content against reality. It also gives them back the lost time and a coherent story of the illness, which is meant to reduce PTSD, anxiety and depression. It helps relatives in the same way [source: Bäckman & Jones 2011; Aitken et al. 2013]. The 2023 pilot rests on the same rationale: factual ICU memories appear protective, and frightening or delusional ones are a risk factor [source: ICCN 2023 aloud-reading pilot].

Where a psychotherapist fits: (a) as a member or consultant of the diary group (writing guidance, staff training, screening pathway); (b) in post-ICU follow-up clinics, where the diary is read and discussed; (c) in later therapy with ICU survivors or bereaved relatives, using the diary as a factual reference. Role (c) is my own extension and is marked [synthesis] where it appears. Outcome evidence is mixed: the RACHEL trial reported less new PTSD (13% vs 5%), while the French trial found no significant effect [source: Jones et al. 2010; The Bottom Line summary of Garrouste-Orgeas 2019]. Use the diary as one part of a follow-up pathway, not as stand-alone PTSD treatment.

2. Framework

The sources describe a sequence of phases rather than a fixed session count [source: Bäckman & Jones 2011; Jones et al. 2010; Aitken et al. 2013; DMS guideline].

Phase 0: Programme set-up (before any diary). Goal: a sustainable local service. Form a diary group of interested staff (Norrköping: six people, including nurses, nurse assistants and an occasional doctor; Whiston: nurses of different grades). The group writes local guidelines (purpose, what to write, care of the diary), an information sheet for relatives, a consent form, a photograph-handling procedure and a follow-up plan. Supplies: A5 lined notebooks (Whiston uses spiral-bound ones with wipeable covers kept at the bedside), a simple camera and a locked drawer. Move on when the guidelines are agreed, staff are trained, and consent and photo storage have been cleared by the hospital's legal or governance team [source: Bäckman & Jones 2011]. The French trial adds training by a lead investigator, written examples from each profession and a local supervisor who trains new staff [source: Garrouste-Orgeas 2017 protocol].

Phase 1: Selection and opening (ICU admission). Goal: start the diary early for patients at risk of memory loss and distress. Trial thresholds were an ICU stay of 72 hours or more with at least 24 hours of ventilation [source: Jones et al. 2010]; or 48 hours or more of ventilation [source: Garrouste-Orgeas 2017]; UK military guidance covers all ventilated patients, plus non-ventilated patients with delirium or cognitive deficit [source: DMS guideline]. The opening entry explains why the patient was admitted to the ICU.

Phase 2: Daily writing (throughout the ICU stay). Goal: a continuous, accurate, humane record. Staff write a short entry daily or on most shifts, plus entries at milestones; relatives write when they wish. Writing takes "a few minutes" a day, and the opening entry takes longer [source: Jones et al. 2010]. In Norrköping the diary follows the patient to the ward, where staff and relatives keep writing [source: Bäckman & Jones 2011]. The phase ends with a closing entry at transfer out of the ICU [source: Aitken et al. 2013; Garrouste-Orgeas 2019 via The Bottom Line].

Phase 3: Consent and handover (from ICU discharge to about 2 months after). Goal: the survivor receives the diary when ready and agrees to keep it. Practice varies: from handover at ICU discharge to 2 months after it. No study gives evidence for the best timing [source: Aitken et al. 2013]. Whiston hands it over before hospital discharge, "when the patient feels ready" [source: Bäckman & Jones 2011]. Criterion for moving on: the patient is oriented, can give written (often retrospective) consent, and wants the diary.

Phase 4: Guided read-through (1 contact). Goal: the survivor understands the content and can ask questions. In RACHEL, a research nurse or doctor took the patient through the diary, usually at the 1-month point, in an outpatient clinic, at home or by phone. Staff checked understanding but gave no advice on what to do with the diary [source: Jones et al. 2010].

Phase 5: Follow-up meeting and screening (1–2 visits). Goal: two-way conversation, checking of uncertain events, and screening. Norrköping holds the "golden meeting" 1–2 months after discharge, in a private room at a clinic run by ICU staff. Whiston sees patients 2–3 months after ICU discharge [source: Bäckman & Jones 2011]. Trials screened at 3 months (PTSS-14, PDS, IES-R, HADS) [source: Jones et al. 2010; Garrouste-Orgeas 2017]. Criterion for referral: a positive screen or a persistent clinical picture → trauma-focused assessment and treatment [synthesis].

Phase 6: Bereavement variant. If the patient dies, the diary goes to the family, with differences over photographs (see 4.14).

Format summary: diary keeping is daily and brief; delivery is one handover, one guided reading and one or two follow-up visits, individually or with family present. Whiston encourages family to attend [source: Bäckman & Jones 2011].

3. Guiding principles

Write to the patient, in everyday language. Entries are addressed personally to the patient, in plain words, without jargon or abbreviations [source: Bäckman & Jones 2011; Aitken et al. 2013; DMS guideline]. In practice: if the patient would not understand it at the kitchen table, rewrite it.
Realism, not reassurance. Write "realistically" [source: Bäckman & Jones 2011]. Telling patients "Don't worry about that" is described as outdated. In practice: name what really happened (the breathing tube, the confusion) without drama.
Fill the gap and correct distortion. The diary exists to give survivors back what happened and to help them separate dreams from reality [source: Bäckman & Jones 2011]. In practice: record what the patient may have perceived (noises, procedures, people present) so that later delusional memories can be anchored to real events.
Bedside test for content. Write only what you would be comfortable saying aloud at the bedside, and leave out confidential or sensitive matter [source: DMS guideline; Garrouste-Orgeas 2017]. In practice: no prognoses you would not say to the family, no confidential third-party information.
The diary is not the place for complaints. Raise concerns about care with the nurse in charge, not in the diary [source: St George's leaflet]. In practice: redirect relatives who start writing grievances.
The patient reads first and decides. The patient chooses whether, when and how to read the diary. Relatives should not read entries others wrote [source: St George's leaflet; ICUsteps]. In practice: offer it, never insist.
Consent and ownership. The patient gives consent (often retrospectively) before taking the diary and the photographs. The diary is hospital documentation until it is handed over [source: Bäckman & Jones 2011; DMS guideline; St George's leaflet]. In practice: get signed consent and file a copy in the notes.
Support, not abandonment. Giving a diary with little support sits poorly with what is known about early psychological intervention [source: Aitken et al. 2013]. In practice: give the diary with a planned read-through and follow-up, never leave it at the end of the bed.
Two-way follow-up. The follow-up meeting lets patients check uncertain events, and lets staff learn how well needs were met [source: Bäckman & Jones 2011]. In practice: ask what they remember and what puzzles them, and answer factually.
Include the family. Relatives went through the same chaos. They write, they get information sheets and they are invited to follow-up [source: Bäckman & Jones 2011; ICUsteps]. In practice: give relatives a prompt sheet and invite them.
Target and respect preference. Most survivors do not develop lasting disorder. Target diaries at those who need them, respect patient preference, and do not mistake acceptability for effectiveness [source: Aitken et al. 2013]. In practice: screen and refer; do not assume the diary is enough.
Memories are the client's experience (Domain VI trauma rule). The diary gives a factual frame, but the clinician does not use it to "recover" memories or press a version of events on the client [synthesis].

4. Intervention inventory

Components 4.1–4.10 and 4.14–4.15 are described in the sources. 4.11 is partly sourced. 4.12–4.13 are a published pilot variant and my own clinical synthesis, labelled as such. Example language is illustrative throughout.

4.1 Setting up the diary group and local guidelines

Purpose / when: before launch, and whenever staff turn over. [source: Bäckman & Jones 2011; Garrouste-Orgeas 2017]
Steps: (1) Recruit a mixed group of interested staff (nurses, nurse assistants, a doctor). (2) Write local guidelines on purpose, what to write, how to care for the diary, photographs, consent and handover. (3) Write a relatives' information sheet that encourages them to write and suggests topics. (4) Write a retrospective consent form. (5) Agree photo handling with the legal department (see 4.6). (6) Protect staff time: Norrköping's four follow-up staff each had 24 hours a month, working in nurse/nurse-assistant pairs at a weekly clinic. (7) Train staff with sample entries from each profession and discuss what they find hard. Name a local lead to supervise and to train new starters [source: Garrouste-Orgeas 2017]. (8) Decide how to evaluate the programme (4.15).
Example language (illustrative, to staff): "Picture the person reading this in three months, at home, trying to make sense of a gap. Write so they can follow it."
Watch for: diaries depending on a few enthusiasts (practice varies with "availability and personal interest" of nurses [source: Aitken et al. 2013]). Nurses not knowing what to write is the commonest staff concern [source: ICCN 2023 pilot]. Signs it is working: most eligible patients have a diary that is opened early and has regular entries.

4.2 Selecting patients

Purpose / when: at ICU admission or once it is clear the stay will be long.
Steps: Apply the local threshold. Published ones include: ventilated 48 hours or more [source: Garrouste-Orgeas 2017]; ICU stay of 72 hours or more with at least 24 hours of ventilation [source: Jones et al. 2010]; any ventilated patient, plus non-ventilated patients with delirium or cognitive deficit [source: DMS guideline]. Norrköping gives follow-up to every stay over four days, with or without a diary [source: Bäckman & Jones 2011]. Research exclusions were severe confusion or brain injury, pre-existing psychosis and diagnosed PTSD [source: Jones et al. 2010], and dementia or acute neurological disease [source: Garrouste-Orgeas 2017]. These were exclusions for research purposes, not clinical contraindications. Some units do not give diaries to oriented patients or to those with severe cerebral damage, dementia or developmental delay [source: Aitken et al. 2013].
Clinician note [synthesis]: for patients with pre-existing PTSD or psychosis, a diary is not ruled out, but plan the handover with their mental-health clinician and read it in a supported setting. Trial exclusions mean there are no data for these groups [uncertain]. The DMS guideline itself notes that such patients may be among those who benefit most.
Watch for: units that over-select, given that the people too confused to consent may be those who would benefit most [source: Aitken et al. 2013].

4.3 Opening the diary

Purpose / when: within the first days; gives the context the patient will not remember.
Steps: (1) Label the cover with name and admission date [source: DMS guideline]. (2) Write the first entry: what led to admission and why ICU care was needed [source: Bäckman & Jones 2011; Jones et al. 2010]. (3) Optional opening pages (French model): a standard page on the diary's purpose, a picture of a typical ICU room with its equipment, photos of the unit and a list of the staff caring for the patient. In that model the ICU physician writes the first entry and summarises the first 48 hours [source: Garrouste-Orgeas 2017]. (4) Tell the relatives about the diary and invite them to write (4.5).
Example language (illustrative, first entry): "Dear Sam, you came to the intensive care unit at St X on Tuesday evening. You had a severe chest infection and your lungs needed help, so we put you to sleep and a machine helped you breathe. Your wife Jo and your son were here with you tonight."
Watch for: opening entries that are medical summaries full of jargon.

4.4 Daily staff entries

Purpose / when: throughout the stay; builds a continuous, accurate narrative.
Steps: (1) Write at least a short entry each day, dated, timed and signed. The DMS guideline says entries need not be every shift, but daily entries give continuity; the French trial made a brief daily entry mandatory [source: DMS guideline; Garrouste-Orgeas 2017]. (2) Write at milestones: extubation, tracheostomy, surgery, transfers, drains removed, first time sitting out of bed, improvements in wounds, pain or oxygen [source: DMS guideline]. (3) Describe the environment the patient may have taken in: alarms, pumps, drain noises, who was present, the weather, news [source: DMS guideline; St George's leaflet]. (4) Address the patient as "you", in everyday language [source: Aitken et al. 2013]. (5) Describe the patient's behaviour realistically, such as confusion or agitation, so that frightening memories have a real anchor [source: Bäckman & Jones 2011 rationale; wording synthesis]. (6) Staff may express compassion and hope [source: Garrouste-Orgeas 2017]. (7) Doctors, physiotherapists and others may add entries [source: St George's leaflet]. (8) Keep detailed treatment information apart from the narrative [source: Aitken et al. 2013, citing other authors].
Example language (illustrative): "You were restless this afternoon and tried to pull at the tube in your mouth. You seemed frightened. We put soft mitts on your hands for a while to keep you safe and sat with you. The beeping you may remember is the machine reminding us to change a drip."
Watch for: gaps of several days; copied chart language; remarks that could shame the patient. Entries may be fewer during very long stays [source: Bäckman & Jones 2011].

4.5 Relatives' entries

Purpose / when: throughout the stay. Adds home life, emotional connection and the family's perspective, and gives relatives something to do.
Steps: (1) Give the relatives' information sheet with suggested topics [source: Bäckman & Jones 2011]. (2) Invite them to write when they wish, "if they felt they could" [source: Jones et al. 2010], free of guidance on style [source: Garrouste-Orgeas 2017]. (3) Suggest news from home, events the patient is missing, messages [source: ICUsteps; St George's leaflet]. (4) Ask them not to write complaints about care and to raise them with the nurse in charge [source: St George's leaflet]. (5) Ask them not to read entries others have written and not to take the diary away from the bedside [source: St George's leaflet]. (6) Remind them not to write confidential matters [source: Garrouste-Orgeas 2017].
Example language (illustrative, to a relative): "You can write whatever you'd like Sam to know later: what's happening at home, what you said to him today. There's no right way."
Watch for: inappropriate remarks from visitors, which some patients later find upsetting [source: Aitken et al. 2013]; family conflict played out in the diary [synthesis].

4.6 Photographs

Purpose / when: to help the patient recognise themselves, prompt recall, correct inaccurate memories and show their progress [source: Bäckman & Jones 2011; Aitken et al. 2013].
Steps (Bäckman & Jones version): (1) Take a photo on the day the diary starts and at points of change in the patient's condition. (2) Keep photos realistic but not intrusive. Get close enough that the patient can recognise themselves. (3) Include staff and relatives where possible, because the patient may otherwise remember only hallucinations. (4) Storage: Norrköping moved images monthly to a memory stick in a locked drawer, in a box per patient. Whiston printed images at once, deleted the card copy and kept prints locked away until the patient consented [source: Bäckman & Jones 2011].
Variant (French ICU-Diary): no photographs of the patient were allowed during the stay. Pre-ICU photos could be used with permission, and relatives were discouraged from taking photos without the patient's permission [source: Garrouste-Orgeas 2017].
Watch for: harrowing images, privacy, and photos of disfigurement (some units leave these out or use generic images) [source: Aitken et al. 2013]. Under UK practice, photos cannot be given to families without the patient's written consent [source: Bäckman & Jones 2011; DMS guideline].

4.7 Consent and documentation

Purpose / when: at the start (from relatives) and once the patient is able to give it.
Steps: Norrköping often starts the diary before consent, seeks it from relatives when the patient is too ill, and invites relatives to write. Whiston presents the diary as standard care, needs no prior consent, and gets written retrospective consent from the patient once well enough to receive it; a copy goes in the notes [source: Bäckman & Jones 2011]. DMS: start as standard therapy if neither patient nor family can consent; get written consent when the patient is able. The diary is "an official form of professional documentation" [source: DMS guideline]. St George's: the patient signs a form recording their wishes; the diary stays hospital property until then [source: St George's leaflet].
Watch for: liability and privacy worries slowing the programme down. US teams name these as the main barriers and deal with them through standard operating procedures [source: Critical Care Nurse 2020 abstract; details uncertain].

4.8 Closing entry and continuation on the ward

Purpose / when: at transfer out of the ICU.
Steps: Write a closing note on the transfer [source: Aitken et al. 2013; Garrouste-Orgeas 2019]. Norrköping: the diary, without photos, goes with the patient to the ward, where staff, relatives and sometimes the patient keep writing [source: Bäckman & Jones 2011]. DMS: the original travels with the patient through the hospital and on transfers [source: DMS guideline].
Example language (illustrative): "Today you moved to Ward 5. You were breathing on your own and sitting in the chair for an hour. We'll miss you, and we hope you will come back to see us at the follow-up clinic."

4.9 Handing over the diary

Purpose / when: between ICU discharge and about 2 months after it. No study gives evidence for the best timing [source: Aitken et al. 2013].
Steps: (1) Check readiness: the patient is oriented, knows the diary exists and wants it. Whiston hands it over before hospital discharge when the patient feels ready and encourages family to attend; DMS hands it over before discharge home when the patient is comfortable [source: Bäckman & Jones 2011; DMS guideline]. (2) Explain what it contains, including photographs, and that the patient may read it at their own pace or not at all [source: ICUsteps; St George's leaflet]. (3) Get signed consent, then hand it over; it becomes the patient's property [source: ICUsteps; St George's leaflet]. (4) Arrange the read-through (4.10) and the follow-up (4.11). RACHEL variant: the diary was posted by registered mail with a letter asking the patient not to read it yet, and a nurse phoned on an agreed date to go through a photocopy together [source: Jones et al. 2010].
Example language (illustrative): "This is the diary the nurses and your family kept while you were asleep. Some people read it straight away, some wait, some never do. It's yours. Many find it easier to look at it the first time with one of us, so we can answer questions."
Watch for: reading too early can be unpleasant [source: Aitken et al. 2013]. Readiness criteria [synthesis]: medically stable, not delirious (check with the team), able to stop reading when they choose, and a supporter available.

4.10 Guided read-through

Purpose / when: first reading, or soon after it. Makes sure the patient understands what happened and has a chance to ask questions.
Steps (RACHEL): a research nurse or doctor introduced the diary, went through it with the patient and checked they understood the content. Staff gave no advice on what to do with it. Most meetings were in outpatients, some at home and some by phone [source: Jones et al. 2010]. Other models range from no discussion at all to a coordinated follow-up with questions answered and counselling offered, or a return visit to the ICU [source: Aitken et al. 2013].
Pacing [synthesis]: read a few days at a time; pause after each entry the patient reacts to; check distress on a simple 0–10 scale; stop at a low-distress point; do not finish on the worst day. End with orientation to the present (see 5. Overwhelm).
Example language (illustrative): "Let's read the first few days. Stop me whenever you want. Is any of this familiar? … You said you remember being tied down. The nurse wrote that you had soft mitts on your hands because you were pulling at your breathing tube. How does it feel to read that?"
Watch for: in one study, 11 of 20 patients found their first reading distressing, and some said it was like going through it all again [source: Aitken et al. 2013]. Signs it is working: questions, recognition, linking delusional fragments to real events, and wanting to read more.

4.11 Follow-up meeting ("golden meeting"), memory checking and screening

Purpose / when: 1–2 months (Norrköping) or 2–3 months (Whiston) after discharge [source: Bäckman & Jones 2011].
Steps: (1) Meet in a private room. The meeting is a two-way conversation in which patients check uncertain events, and staff learn how well needs were met [source: Bäckman & Jones 2011]. (2) Invite the patient to bring the diary [source: DMS guideline]. (3) Ask about memories: factual, emotional and delusional. Trials used the ICU Memory Tool at 1–2 weeks to record recall, including delusional memories [source: Jones et al. 2010]; describe it, do not reproduce its items. Delusional and emotional memories were linked to PTSD symptoms in the French trial [source: Garrouste-Orgeas 2019 via The Bottom Line]. (4) Screen with validated instruments used in trials: PTSS-14 (cut-off 45 in RACHEL), PDS, IES-R (cut-off above 22), HADS (cut-off 8) [source: Jones et al. 2010; Garrouste-Orgeas 2017]. Use licensed versions; items are not reproduced here. (5) Give recovery information, for example Whiston's use of the ICU Recovery Manual [source: Bäckman & Jones 2011]. (6) Refer if positive (5. Non-response).
Memory-checking steps [synthesis]: let the patient describe the frightening memory in their own words; ask what they make of it now; then look together at the entries for that date ("Let's see what was happening around you that day"). Point to possible real anchors (procedures, noises, restraint, staff in masks) without telling the patient their experience was "wrong". It was a real experience of a disordered state.
Example language (illustrative): "Many people remember things from intensive care that feel completely real: being kidnapped, staff trying to hurt them. Often they mix real events with what the illness and medicines did to the brain. Shall we see what the diary says about that night?"
Watch for: relief when anchors are found, which shows it is working. Distress that keeps rising even when real anchors are found suggests possible PTSD, so screen and refer.

4.12 Aloud real-time reading (pilot variant)

Purpose / when: during the ICU stay, to re-orient patients and encourage factual memories.
Steps: entries are read aloud to the patient right after they are written, intended on at least 80% of days [source: ICCN 2023 pilot abstract]. Who read and how is not described in the abstract [uncertain].
Watch for: feasible in 57% of patients at first, rising to 86% after protocol changes. Patients found it comforting. Some therapists feared it could overwhelm patients. There was no difference in psychiatric outcomes against a historical cohort, and the authors do not recommend a change in practice [source: ICCN 2023 pilot]. Treat it as experimental.

4.13 Using the diary in later psychotherapy [synthesis]

No source describes this. The following is a clinical synthesis for a therapist seeing an ICU survivor with post-ICU PTSD, anxiety or depression, alongside an evidence-based trauma-focused therapy (e.g. trauma-focused CBT or EMDR, each delivered per its own protocol).

Purpose / when: after stabilisation, when the client has a diary and memory gaps or delusional memories are maintaining symptoms.
Readiness criteria: medically stable; no active delirium; able to name and use at least one grounding skill; no acute suicidality; a supporter available after sessions; the client chooses to bring the diary.
Steps: (1) Ask whether the client has read it and how that went. (2) Build a timeline: the client's own memories on one line, diary events on another. (3) Find hotspots: the worst memory moments, real or delusional. (4) Use diary entries as information that updates meaning ("I was being poisoned" → "I was being given treatment while confused"). (5) Dose: one or two hotspots per session, leaving at least 10–15 minutes to ground and close. (6) Close each session with orientation, a summary of the new information, and a plan for the diary between sessions (e.g. keep it closed, or read one agreed entry).
Example language (illustrative): "Your memory of that night is real as an experience. The diary adds what the staff saw from outside. We can hold both."
Watch for: dissociation (glazed look, slowed replies, feeling unreal), in which case stop reading and ground. Do not use the diary, imagery or suggestion to "recover" memories the client does not have; fill gaps only with what the diary records, and label it as others' account.

4.14 Diaries for bereaved families

Purpose / when: when the patient dies.
Steps: Norrköping gives the diary and photos to relatives at a follow-up meeting. Whiston contacts the family about three weeks after the death and offers only the written part, because UK law prevents releasing photos without the patient's written consent [source: Bäckman & Jones 2011]. DMS: the diary can go to next of kin, but not the photographs [source: DMS guideline]. French model: handed to family present in the unit, or posted with a standard letter [source: Garrouste-Orgeas 2017].
Example language (illustrative): "The nurses kept a diary for your husband while he was with us. Some families find it comforting to have it; others prefer not to. Would you like us to send it, or to go through it with you here?"
Watch for: bereaved families had "mixed feelings" about seeing photos [source: Aitken et al. 2013]. Offer support or a bereavement referral [synthesis].

4.15 Programme evaluation

Purpose / when: continuously.
Steps: Norrköping uses an anonymous patient questionnaire, plus SF-36 quality of life at 2, 6 and 12 months; Whiston asks patients and families directly at clinic [source: Bäckman & Jones 2011]. Track uptake, reading rates, distress reported at reading and screen-positive rates [synthesis].
Watch for: do not mistake acceptability for effectiveness [source: Aitken et al. 2013].

5. Handling problems

The sources name the problems (distress at first reading, reading too early, harrowing photos, inappropriate remarks, gaps, death, legal constraints, staff time) but give few concrete responses. Responses below are my own [synthesis] unless a source is tagged.

Distress or overwhelm at first reading (11 of 20 in one study; "going through it all again" [source: Aitken et al. 2013]). Response [synthesis]: stop reading; name it as a common, expectable reaction; ground the client (feet on the floor, name five things in the room, today's date and place, slow outward breaths); point out that they survived and are here now; close the diary; agree the next reading will be shorter and supported. Arrange a check-in call within a few days. If distress persists over weeks, screen for PTSD (4.11).
Dissociation while reading [synthesis]: speak the client's name; orient to time and place; use a cold object, standing up or a strong smell; once present, summarise briefly and end on neutral material. Next time, read in smaller doses with more frequent check-ins. Flag pre-existing dissociative disorders for specialist input.
Client does not want to read, or avoids it. The patient decides [source: St George's leaflet; ICUsteps]. Note that diaries may reduce helpful avoidance in some people [source: Aitken et al. 2013]. Response [synthesis]: respect the choice; offer to keep the diary safe or to hold it at the clinic; normalise reading later; if avoidance is part of a PTSD picture, treat it within trauma-focused therapy rather than pushing the diary.
Too early or not ready (premature reading unpleasant [source: Aitken et al. 2013]): delay; hand over the diary with a letter asking the patient to wait for a supported reading, as in RACHEL [source: Jones et al. 2010].
Diary conflicts with what the client remembers [source: Aitken et al. 2013 names it]. Response [synthesis]: do not argue; validate the experience as real and the diary as the staff's outside view; explore meanings; offer contact with ICU staff to clarify (the two-way golden meeting [source: Bäckman & Jones 2011]).
Gaps, upsetting remarks or harrowing photos [source: Aitken et al. 2013]. Response [synthesis]: prepare the client before reading ("there are some days with few entries, and some photos of you on the ventilator"); offer to read the text first and look at photos later (49% of patients found text most helpful, 15% photos [source: Bäckman & Jones 2011]); feed problems back to the diary group to change its guidelines.
Family distress or family conflict [synthesis]: relatives may be more traumatised than the patient. Offer them their own screening and support (in the French trial, about half of family members scored above the IES-R threshold at 3 months [source: Garrouste-Orgeas 2019 via The Bottom Line]). Ask the patient's permission before relatives read others' entries [source: St George's leaflet].
Non-response: diary given, symptoms persist (the French trial found no significant effect on PTSD symptoms [source: Garrouste-Orgeas 2019 via The Bottom Line]). Response [synthesis]: the diary is not a treatment for established PTSD; refer to or deliver an evidence-based trauma-focused therapy, using the diary as material (4.13).
Suicidal ideation or severe depression at follow-up [synthesis]: carry out standard risk assessment, safety planning and urgent referral following local protocol; screen for depression with HADS or an equivalent [source: Garrouste-Orgeas 2017 used HADS].
Ruptures (anger at the ICU or at staff) [synthesis]: complaints belong outside the diary [source: St George's leaflet]. Validate anger; provide routes to the patient advice and liaison service or the complaints process; do not defend colleagues' care within the therapy.
Cognitive impairment or delirium on the ward [synthesis]: postpone; involve family; keep sessions very short and concrete.
Staff programme problems: time, not knowing what to write, enthusiasm fading [source: ICCN 2023 pilot; Aitken et al. 2013]: protected time, short written examples, a local champion [source: Bäckman & Jones 2011; Garrouste-Orgeas 2017].
Legal or privacy concerns (photographs, liability, discoverability): settle procedures with the legal department beforehand; follow Whiston's print-and-delete procedure or the French no-photo rule [source: Bäckman & Jones 2011; Garrouste-Orgeas 2017]. Diary entries are formal documentation [source: DMS guideline]. Local law varies [uncertain].
Language, culture and literacy [synthesis]: write in the patient's language, or arrange translation; offer audio reading.

Sources

Sources:

Further reading (not drawn on in full): Garrouste-Orgeas M et al. (2019) Effect of an ICU diary on posttraumatic stress disorder symptoms among patients receiving mechanical ventilation, JAMA; Knowles RE & Tarrier N (2009) prospective diaries RCT, Crit Care Med (cited via Aitken et al.); Åkerman E et al. (2013) photodiary content, Aust Crit Care; Beg M et al. framework for implementing ICU diaries, Aust Crit Care (cited in DMS guideline). The ICU Diary Network's implementation guidelines (icu-diary.org) are not drawn on [uncertain].

← Previous · VI-060Visuospatial game task after trauma (Tetris intervention)Next · VI-062 →Group stabilising treatment