Newsletter November 2024
14/11/24 04:45 Filed in: News-Ticker
Dear friends of the ICU diary
We hope that you are all doing well!
New in our newsletter team and heartly welcomed are Chu-Won Sim and Manuel Köpper, who take care of diaries and related topics for pediatric patients.
As usual, we have summarized some studies about ICU diaries for you and report some other interesting papers, too!
Enjoy reading!
Teresa, Kristin, Chu-Won, Manuel, and Peter
DIARY CONFERENCE
It is time for another international ICU Diary Conference! Bev Ewens, Lou Gallie, Christina Jones, Lioudmila Karnatovskaia, and Peter Nydahl are organizing a diary conference for 2025. The basic idea is to have a virtual, free conference via Zoom, with 5-6 weekly 90 minutes sessions in June and July 2025. Since we and you are from different continents, the best time point will be around morning in South and North America, noon in Europe, and evening in Asia & Australia). We are preparing the program and speakers right now. Stay tuned for the next diary conference!
DIARY STUDIES
Can ICU Diaries also cause harm?
ICU diaries are written for intensive care patients by healthcare staff and family members to help them understand their time in the ICU and afterwards, to make sense of their sometimes frightening experiences, and to distinguish between dreams and reality. Diaries are now recommended in guidelines for the prevention of post-intensive care syndrome and are seen as a quality indicator of patient- and family-centered care. But if diaries have positive effects, could they also lead to unintended consequences? There are anecdotal reports of people crying when reading the diary. Is this a natural and perhaps healthy reaction to a reminder of a traumatic time, or is it avoidable harm, defined as a deterioration of physical, emotional, or psychological functioning or structure? The aim of this research was to investigate the extent of possible harm for critically ill patients, their family members, and healthcare professionals associated with writing and reading ICU diaries. To answer this, a systematic literature review was conducted in the databases PubMed, Cochrane Library, CINAHL, PsychNet, and Livivo, followed by a synthesis of qualitative data. The study protocol was registered in the International Prospective Register of Systematic Reviews (CRD42022376393). The review included qualitative and mixed-methods studies related to potential harm associated with ICU diaries. Using deductive content analysis, quotations were abstracted and analyzed.
In total, 27 studies with 476 participants were included from a pool of 12,827 titles. Events with emotional reactions affecting patients, family members, and healthcare professionals were identified but did not result in harm. In total, 68 quotations from patients, family members, and healthcare professionals were extracted. Patients who described their intense feelings related to the diaries reported reading as an emotional journey (“I cried and cried … everything written here is about me, but I remember none of it”). Family members saw the diary as a help with tears (“It still hurts to read it, but I will always treasure the diary.”) and healthcare professionals raised the question of emotional distance (“It somehow feels too close for me”). No study reported lasting harm. Writing and reading ICU diaries can be associated with intense emotions, which are natural reactions to a stressful situation. Based on uncertain qualitative evidence, the benefits of writing and reading ICU diaries as coping strategies outweigh the possible burdens. For individuals potentially at risk for inadequate coping strategies, diaries should initially be read in the presence of healthcare staff and/or family members.
Exl MT, Lotzer L, Deffner T, Jeitziner MM, Nydahl P. Intensive care unit diaries-harmful or harmless: A systematic literature review and qualitative data synthesis. Aust Crit Care. 2024 Oct 9:S1036-7314(24)00257-1
Enhancing ICU care with nurse-written diaries
This study examined themes in nurse-written ICU diaries and their impact on nursing work and communication. Using a narrative methodology, researchers analyzed diaries from 28 ICU nurses with varying years of experience. Two main themes emerged: (1) simplifying the ICU experience through minimization strategies of discomfort, and (2) the importance of nonverbal communication. The study found that nurse-written diaries help make the ICU environment more understandable and less intimidating for patients, enhancing communication and emotional support. These diaries play a crucial role in reducing patient anxiety, fostering nurse-patient connections, and improving care quality. Further research is recommended to better understand their broader impact on patient outcomes.
Bosco V, Mercuri C, Giordano V, Froio AM, Commisso D, Nocerino R, Guillari A, Rea T, Mastrangelo H, Uchmanowicz I, Simeone S. Enhancing ICU care with nurse-written diaries. Nurs Crit Care. 2024 Nov;29(6):1355-1362
Meta-Analysis of ICU diaries on psychological disorders on patients and families
This systematic review and meta-analysis evaluated the effects of ICU diaries on psychological health and sleep quality in critically ill patients and their family members. Based on 11 studies with 1,682 patients, the analysis found that ICU diaries reduced depression and post-traumatic stress disorder (PTSD) and improved sleep quality in patients:
PTSD (7 studies, 1015 patients): OR 0.63 (95%CI 0.45-0.87), p = 0.005;
Depression (6 studies, 546 patients): OR 0.62 (95%CI 0.39-0.97), p = 0.04;
Sleep quality (2 studies, 203 patients): OR -3.97 (95%CI -7.71-0.23), p = 0.04.
However, there was no significant impact on patients' anxiety or on psychological disorders in family members. The findings suggest that while ICU diaries can be beneficial for patients' mental health and sleep, they may not significantly affect family members' psychological well-being. Due to the potential for bias and limited sample sizes, the results should be interpreted with caution. Future research should focus on multidisciplinary approaches to diary-based treatment in ICUs and include larger, multi-center studies to better understand its effects, especially on family members.
Huang W, Gao Y, Zhou L, Xiao X, Xu H, Lu L, Deng J, Wu J. Effects of ICU diaries on psychological disorders and sleep quality in critically ill patients and their family members: A systematic review and meta-analysis. Sleep Med. 2024 Oct;122:84-91. doi: 10.1016/j.sleep.2024.08.002
The patient experience of a nurse-written ICU-diary intervention: A cross sectional survey
This study explored patients' experiences with nurse-written ICU diaries in Norway. Among 88 discharged ICU patients, 90% were satisfied with the diary handover process. A large majority felt the diaries showed quality care, helped them understand the severity of their illness and the need for a long recovery time, and fostered gratitude for survival. However, 30% reported feeling saddened by the diary, 6% felt it reminded them of a time they wished to forget, and 17% noted missing critical events in the diary. Almost all patients (98%) supported continuing the diary intervention. For clinical practice, the study suggests that diary handovers should be customized to each patient's preferences regarding timing and approach. Enhancements could include a more complete narrative that covers both positive and challenging ICU experiences.
Högvall LM, Herling SF, Egerod I, Petosic A, Danielsen MER, Rüdiger U, Rustøen T, Berntzen H. The patient experience of a nurse-written ICU-diary intervention: A cross sectional survey. Intensive Crit Care Nurs. 2024 Oct 3;86:103846. doi: 10.1016/j.iccn.2024.103846
Study protocol: electronical ICU Diaries
This study aims to address limitations of traditional handwritten ICU diaries, such as restricted multimedia use, limited access for remote family members, and time constraints. The researchers propose developing an ICU electronic diary platform using a co-design approach to make it more user-friendly and accessible. The study follows a sequential exploratory mixed-methods design in four phases: (1) analyzing current ICU diary practices, (2) conducting stakeholder interviews to guide platform development, (3) testing the platform’s usability, and (4) evaluating its effectiveness. This approach aims to create a more efficient and accessible diary system to support ICU patients' mental health and recovery.
Li L, Pan X, Tong Q, Gao H, Yuan Y, Zhang X, Chen J, Chang Y, Zhang T, Hu R. Application of ICU electronic diary platform based on co-design concept in Chinese critically ill patients: a mixed methods study protocol. BMJ Open. 2024 Oct 29;14(10):e084924. Doi: 10.1136/bmjopen-2024-084924.
Family’s preferences for and experiences of writing practices in adult intensive care and its use in early bereavement
This study explored family members' experiences and preferences regarding writing practices during a loved one’s ICU stay and their role in early bereavement. Sixteen bereaved participants from an Australian ICU were interviewed, with six maintaining writing practices and ten not. Three themes emerged: decisions to write were influenced by personal habits and perceived benefits; writing content depended on the patient's condition and access to writing materials; and writing had limited use as a memory object in early bereavement. Family members who chose not to write did not regret it later. Those who did write typically used a personal diary or journal, with entries becoming shorter as the patient's condition worsened, often stopping altogether. These entries were rarely revisited in early bereavement, suggesting the main psychological benefit of writing was experienced at the time of writing rather than afterward.
Riegel M, Buckley T, Randall S. Family's preferences for and experiences of writing practices in adult intensive care and its use in early bereavement: A descriptive qualitative study. Aust Crit Care. 2024 Jul;37(4):614-620
Debate about the use of AI generated ICU Diaries
The editor of Intensive and Critical Care Nursing Stijn Blot initiated a debate about the use of AI generated ICU diaries: shall we use AI to generate diaries or not? In the pro-position, the authors argues with several aspects such as saved nursing time and personal resources, protection of nurses privacy, impartial and objective entries, continuity, diaries on demand, and possible standardization of diaries which might be relevant for research. At the end of the short article, the pro-authors gave a statement of their personal attitude towards AI generated diaries (handle with care, AI shall not replace real nursing encounters).
In the con-position, the author argues that ICU diaries, originally developed by nurses as an empathetic tool to support patient memory and recovery, carry an intrinsic value through their personal, handwritten approach, which AI-generated versions may lack. While Peschel et al. propose AI diaries to address nursing shortages, the article questions whether these digital records can truly replicate the personal, compassionate essence of traditional diaries. Without a clear purpose for ICU diaries, the article cautions that AI-generated versions could erode their intended supportive function, risking a shift toward impersonal documentation rather than meaningful patient care.
A great and surely ongoing discussion. We are thankful to Stijn, who initiated the debate and are curious for further arguments and developments
Pro: Peschel E, Krotsetis S, Nydahl P. Should we use artificial intelligence (AI) for writing ICU diaries? Yes! Intensive Crit Care Nurs. 2024 Oct 27;86:103867. doi: 10.1016/j.iccn.2024.103867
Con: Egerod I. Should we use artificial intelligence (AI) for writing ICU diaries? Not yet! Intensive Crit Care Nurs. 2024 Oct 27;86:103868
LifeMapp Diary
Last year, LifeMapp Diary was launched in France. LifeMapp Diary is a free, safe, web based ICU diary platform, developed with and for ICU professionals, patients and relatives by 101 Fund. After one year and a half, LifeMapp Diary is now successfully used in more than 15 ICUs in France!
LifeMapp Diary is now available in English and Portuguese. Next steps are translation for German, Spanish, Italian and Dutch: please contact us if you want to help with the translation or with the testing!
Next step will be to build innovative research projects around it, as our app makes it possible to extract anonymous utilization data! If you have ideas, please feel free to get in touch !
Link to the website Questions to Anne-Sophie
RELATED STUDIES
Some titles are hand selected and edited from the @ICURehab Newsletter by Dale M. Needham, Critical Care Reviews by Rob Mac Sweeney, and from our own searches.
Quality of Dying and Family Outcomes: In an observational study in Taiwanese intensive care units from 2019-2022, Wen et al. (2024) investigated the extent to which the mental health of relatives is related to their perception of the quality of end-of-life care. 309 relatives participated initially and 253 after one year: relatives shared information about their mental health and rated the process of death and dying in the ICU. If the dying process was assessed negatively, the probability of a poor mental state of the relatives was significantly increased. The authors conclude, that optimal physical symptom management, adequate psycho-spiritual support and avoidance of unnecessary life sustaining treatment is not only important for the dying patient, but also for the longtime outcomes of relatives. Wen et al (2024) from Taiwan Link
Write: Daily written updates for families of ICU patients supplement the verbal communication and support the team communication. Lee et al (2024) from the US Link
Resilience: in 382 ICU patients, resilient patients had a lower prevalence of PTSD symptoms and higher quality of life scores, compared to patients with low resilience. Higher scores for social support and illness perception were independently associated with greater resilience. The findings suggest that interventions to strengthen social support and improve illness
perception may help to improve resilience. Mathieu et al (2024) from France Link
Visitor Restrictions: In a meta synthesis of 184 studies examining the effects of visitor restrictions during the pandemic on patients, families, and staff, 54 different themes were identified. Visitor restrictions led to sometimes severe consequences for those affected and must be carefully considered. However, strategies were also developed to help mitigate these effects. (Krewulak et al., 2024) Link
Family & Delirium: In a Meta-Analysis with 11 RCT and 3,113 ICU patients, family involvement significantly reduces delirium in critically ill patients, with direct caregiving participation by family members being the most effective approach. Li et al (2024) Link
Anxiety: An analysis of 26 RCTs involving 2,791 intensive care patients demonstrated an effective anxiety-reducing effect from interventions such as music therapy, aromatherapy, ICU diaries, virtual reality, massage, and information & education. Meta-analysis by Ma et al. (2024) Link
PICS-Family: This randomised clinical cluster-crossover study found that a flexible visitation model in the ICU was associated with a significant reduction in the one-year prevalence of post-traumatic stress symptoms in family members (n=519). Barreto de Souza et al (2024) from Brazil, 2024 Link
ICU Café: Visiting an ICU café was important for former intensive care patients, offering them with the opportunity to meet peers with similar experiences and exchange stories; patients and their loved ones reported feeling less isolated as a result. Glaemose et al. (2024) from Denmark Link
Humanisation: A short audio message from patients during admission, answering four questions 1. How would you like to be addressed? 2. What brings you joy? 3. What does your medical team need to know to care for you optimally? 4. What brings you peace?—improved communication and empathy within the care team. Tracey et al. (2024) from the USA Link
You are safe here: a flyer with re-orientating messages for relatives of patients in delirium, is available in eleven different languages. Check the supplement for the flyer and use it in your hospital. Nydahl et al (2024) Link
Music: In an analysis of interviews on listening to personalised music during ventilation, 14 intensive care patients reported that the music helped them regain consciousness, activate cognitive abilities, humanise the hospital experience, connect with the outside world, improve personal well-being, and ease the issues associated with silence. Menza et al. (2024) from the USA Link
Long-term ICU Patients: In a Delphi process with 116 healthcare professionals, former patients, and families, 32 quality criteria were developed for the care of patients with prolonged ICU stays. These include transfer planning, regular case discussions, evaluation of rehabilitation measures, weaning, ICU-acquired weakness (ICUAW), nutrition, sleep, patient-centred activities, psychological support, and more. Allum et al. (2024) from the United Kingdom Link
Family: A nurse-led, family-centred intervention involving guideline-recommended emotional support and regular communication, compared to standard care, resulted in significant hospital cost reductions and lower 6-month readmission rates for 1,420 patients. Cluster-randomised study by Andersen et al. (2024) from the USA Link
PICS Clinic: Among 77 intensive care patients with an ICU stay of ≥7 days, follow-up in a PICS clinic after 6 months and further care up to 12 months revealed highly varied outcomes; the PICS clinic was very well received by patients. Maurer et al. (2024) from Switzerland Link
Psychologists in ICU: In France, a law mandating the presence of psychologists in intensive care units has been in effect since 2022. A survey of this profession revealed a diverse array of work settings, tasks, responsibilities, methods, and target groups (ICU patients and post-ICU survivors, families, staff), offering a promising model for other countries. Landbeck et al. (2024) from France Link
After Intensive Care: For many survivors, ICU treatment is only the beginning of a long journey, where planning of treatment, transfer, and follow-up care should be coordinated appropriately and early. Review by Teixeira et al. (2024) Link
Patient-Centred Outcomes: Which outcomes do patients and their families consider important? Thirty outcomes were identified (including neuro-muscular and physical functions, ADL, mental health, healthcare resources, experiences, performance, residence, quality of life, and participation) and are now set to be incorporated into a Core Outcome Set. Connolly et al. (2024) fron the UK Link
Self-Set Goals: In a two-year prospective cohort of 105 ICU survivors participating in a digitally supported rehabilitation program focused on achieving individual recovery goals, approximately half of participants’ goals were met, including going outdoors, moving around at home, and navigating their surroundings. Rose et al. (2024) from the UK Link
PEDIATRIC STUDIES
Post-Traumatic Growth/Decline: In a mixed-methods analysis involving 26 pediatric ICU patients aged 6 to 12 and their parents, two fundamental ways of coping with the ICU experience were identified: (post-traumatic) growth or failure. Both pathways can be influenced, so the authors recommend early psychological support for the children and their parents. Liu et al. (2024) from China Link
Stress symptoms in children: In a prospective cohort study Daughtrey at al. described stress symptoms of 88 children and parents after admission to the PICU. They found acute stress symptoms in 39% of the children and 56% of the parents. Parents´ stress was associated with increased risk of childrens´stress. The study therefore supports earlier findings that showed the connection between parental and child stress. Interventions must therefore always focus on the dyad between parent and child or on the family system. Daughtrey et al (2024) from the US Link
Near Death Experiences in children
A case study used verbal and non-verbal exploration methods to investigate the near death experiences of children after a stay in intensive care. The children described similar phenomena to those found in adults. The authors emphasize the relevance of children as an important group in research on near death experiences. Thomas et al. (2024) from the UK Link
Siblings: Siblings of sick children often receive less attention in the pediatric intensive care unit. In this qualitative study, a handful of parents were asked about their experiences with their healthy children, while their child with a heart condition is being treated in intensive care. Aspects that could be relevant for sibling support - and also for staff - are listed, both supportive and challenging. Butler et al (2024) from Australia Link
Humanisation in Pediatrics: An analysis of 100 studies on the implementation of humanised pediatric intensive care identified seven central themes: family participation, communication, satisfaction, staff care, PICS, end-of-life care, and infrastructure. Review by Garcia-Fernandez et al. (2024) Link
PTSD in Children: Among 65 children (median age 8 years) admitted to an ICU due to sepsis five years prior, one-third (30.8%) showed an increased risk of PTSD. Burcher et al. (2024) from the UK Link
Missing a study?
We can't read and summarize every study. If we missed an important study, please email us a brief summary and reference, and we'll be happy to include it in the newsletter!
Stay heathy and best wishes!
Teresa, Kristin, Chu-Won, Manuel & Peter
Dr. Teresa Deffner, Dipl.-Rehapsych. (FH), Psychologist in Intensive Care Medicine, University Hospital Jena, Germany
Kristin Gabriel, Media economist, art historian, and yoga teacher, Berlin
Dr. Chu-Won Sim, M.Sc. psychologist at the department of pediatric cardiology, Deutsches Herzzentrum der Charité (DHZC), Berlin, Germany
Manuel Köpper, M.Sc. Psychologist, Pediatric Intensive Care Unit, Tübingen University Hospital, Germany
Dr. Peter Nydahl, RN BScN MScN, Nursing Research, University Hospital of Schleswig-Holstein, Germany
We hope that you are all doing well!
New in our newsletter team and heartly welcomed are Chu-Won Sim and Manuel Köpper, who take care of diaries and related topics for pediatric patients.
As usual, we have summarized some studies about ICU diaries for you and report some other interesting papers, too!
Enjoy reading!
Teresa, Kristin, Chu-Won, Manuel, and Peter
DIARY CONFERENCE
It is time for another international ICU Diary Conference! Bev Ewens, Lou Gallie, Christina Jones, Lioudmila Karnatovskaia, and Peter Nydahl are organizing a diary conference for 2025. The basic idea is to have a virtual, free conference via Zoom, with 5-6 weekly 90 minutes sessions in June and July 2025. Since we and you are from different continents, the best time point will be around morning in South and North America, noon in Europe, and evening in Asia & Australia). We are preparing the program and speakers right now. Stay tuned for the next diary conference!
DIARY STUDIES
Can ICU Diaries also cause harm?
ICU diaries are written for intensive care patients by healthcare staff and family members to help them understand their time in the ICU and afterwards, to make sense of their sometimes frightening experiences, and to distinguish between dreams and reality. Diaries are now recommended in guidelines for the prevention of post-intensive care syndrome and are seen as a quality indicator of patient- and family-centered care. But if diaries have positive effects, could they also lead to unintended consequences? There are anecdotal reports of people crying when reading the diary. Is this a natural and perhaps healthy reaction to a reminder of a traumatic time, or is it avoidable harm, defined as a deterioration of physical, emotional, or psychological functioning or structure? The aim of this research was to investigate the extent of possible harm for critically ill patients, their family members, and healthcare professionals associated with writing and reading ICU diaries. To answer this, a systematic literature review was conducted in the databases PubMed, Cochrane Library, CINAHL, PsychNet, and Livivo, followed by a synthesis of qualitative data. The study protocol was registered in the International Prospective Register of Systematic Reviews (CRD42022376393). The review included qualitative and mixed-methods studies related to potential harm associated with ICU diaries. Using deductive content analysis, quotations were abstracted and analyzed.
In total, 27 studies with 476 participants were included from a pool of 12,827 titles. Events with emotional reactions affecting patients, family members, and healthcare professionals were identified but did not result in harm. In total, 68 quotations from patients, family members, and healthcare professionals were extracted. Patients who described their intense feelings related to the diaries reported reading as an emotional journey (“I cried and cried … everything written here is about me, but I remember none of it”). Family members saw the diary as a help with tears (“It still hurts to read it, but I will always treasure the diary.”) and healthcare professionals raised the question of emotional distance (“It somehow feels too close for me”). No study reported lasting harm. Writing and reading ICU diaries can be associated with intense emotions, which are natural reactions to a stressful situation. Based on uncertain qualitative evidence, the benefits of writing and reading ICU diaries as coping strategies outweigh the possible burdens. For individuals potentially at risk for inadequate coping strategies, diaries should initially be read in the presence of healthcare staff and/or family members.
Exl MT, Lotzer L, Deffner T, Jeitziner MM, Nydahl P. Intensive care unit diaries-harmful or harmless: A systematic literature review and qualitative data synthesis. Aust Crit Care. 2024 Oct 9:S1036-7314(24)00257-1
Enhancing ICU care with nurse-written diaries
This study examined themes in nurse-written ICU diaries and their impact on nursing work and communication. Using a narrative methodology, researchers analyzed diaries from 28 ICU nurses with varying years of experience. Two main themes emerged: (1) simplifying the ICU experience through minimization strategies of discomfort, and (2) the importance of nonverbal communication. The study found that nurse-written diaries help make the ICU environment more understandable and less intimidating for patients, enhancing communication and emotional support. These diaries play a crucial role in reducing patient anxiety, fostering nurse-patient connections, and improving care quality. Further research is recommended to better understand their broader impact on patient outcomes.
Bosco V, Mercuri C, Giordano V, Froio AM, Commisso D, Nocerino R, Guillari A, Rea T, Mastrangelo H, Uchmanowicz I, Simeone S. Enhancing ICU care with nurse-written diaries. Nurs Crit Care. 2024 Nov;29(6):1355-1362
Meta-Analysis of ICU diaries on psychological disorders on patients and families
This systematic review and meta-analysis evaluated the effects of ICU diaries on psychological health and sleep quality in critically ill patients and their family members. Based on 11 studies with 1,682 patients, the analysis found that ICU diaries reduced depression and post-traumatic stress disorder (PTSD) and improved sleep quality in patients:
PTSD (7 studies, 1015 patients): OR 0.63 (95%CI 0.45-0.87), p = 0.005;
Depression (6 studies, 546 patients): OR 0.62 (95%CI 0.39-0.97), p = 0.04;
Sleep quality (2 studies, 203 patients): OR -3.97 (95%CI -7.71-0.23), p = 0.04.
However, there was no significant impact on patients' anxiety or on psychological disorders in family members. The findings suggest that while ICU diaries can be beneficial for patients' mental health and sleep, they may not significantly affect family members' psychological well-being. Due to the potential for bias and limited sample sizes, the results should be interpreted with caution. Future research should focus on multidisciplinary approaches to diary-based treatment in ICUs and include larger, multi-center studies to better understand its effects, especially on family members.
Huang W, Gao Y, Zhou L, Xiao X, Xu H, Lu L, Deng J, Wu J. Effects of ICU diaries on psychological disorders and sleep quality in critically ill patients and their family members: A systematic review and meta-analysis. Sleep Med. 2024 Oct;122:84-91. doi: 10.1016/j.sleep.2024.08.002
The patient experience of a nurse-written ICU-diary intervention: A cross sectional survey
This study explored patients' experiences with nurse-written ICU diaries in Norway. Among 88 discharged ICU patients, 90% were satisfied with the diary handover process. A large majority felt the diaries showed quality care, helped them understand the severity of their illness and the need for a long recovery time, and fostered gratitude for survival. However, 30% reported feeling saddened by the diary, 6% felt it reminded them of a time they wished to forget, and 17% noted missing critical events in the diary. Almost all patients (98%) supported continuing the diary intervention. For clinical practice, the study suggests that diary handovers should be customized to each patient's preferences regarding timing and approach. Enhancements could include a more complete narrative that covers both positive and challenging ICU experiences.
Högvall LM, Herling SF, Egerod I, Petosic A, Danielsen MER, Rüdiger U, Rustøen T, Berntzen H. The patient experience of a nurse-written ICU-diary intervention: A cross sectional survey. Intensive Crit Care Nurs. 2024 Oct 3;86:103846. doi: 10.1016/j.iccn.2024.103846
Study protocol: electronical ICU Diaries
This study aims to address limitations of traditional handwritten ICU diaries, such as restricted multimedia use, limited access for remote family members, and time constraints. The researchers propose developing an ICU electronic diary platform using a co-design approach to make it more user-friendly and accessible. The study follows a sequential exploratory mixed-methods design in four phases: (1) analyzing current ICU diary practices, (2) conducting stakeholder interviews to guide platform development, (3) testing the platform’s usability, and (4) evaluating its effectiveness. This approach aims to create a more efficient and accessible diary system to support ICU patients' mental health and recovery.
Li L, Pan X, Tong Q, Gao H, Yuan Y, Zhang X, Chen J, Chang Y, Zhang T, Hu R. Application of ICU electronic diary platform based on co-design concept in Chinese critically ill patients: a mixed methods study protocol. BMJ Open. 2024 Oct 29;14(10):e084924. Doi: 10.1136/bmjopen-2024-084924.
Family’s preferences for and experiences of writing practices in adult intensive care and its use in early bereavement
This study explored family members' experiences and preferences regarding writing practices during a loved one’s ICU stay and their role in early bereavement. Sixteen bereaved participants from an Australian ICU were interviewed, with six maintaining writing practices and ten not. Three themes emerged: decisions to write were influenced by personal habits and perceived benefits; writing content depended on the patient's condition and access to writing materials; and writing had limited use as a memory object in early bereavement. Family members who chose not to write did not regret it later. Those who did write typically used a personal diary or journal, with entries becoming shorter as the patient's condition worsened, often stopping altogether. These entries were rarely revisited in early bereavement, suggesting the main psychological benefit of writing was experienced at the time of writing rather than afterward.
Riegel M, Buckley T, Randall S. Family's preferences for and experiences of writing practices in adult intensive care and its use in early bereavement: A descriptive qualitative study. Aust Crit Care. 2024 Jul;37(4):614-620
Debate about the use of AI generated ICU Diaries
The editor of Intensive and Critical Care Nursing Stijn Blot initiated a debate about the use of AI generated ICU diaries: shall we use AI to generate diaries or not? In the pro-position, the authors argues with several aspects such as saved nursing time and personal resources, protection of nurses privacy, impartial and objective entries, continuity, diaries on demand, and possible standardization of diaries which might be relevant for research. At the end of the short article, the pro-authors gave a statement of their personal attitude towards AI generated diaries (handle with care, AI shall not replace real nursing encounters).
In the con-position, the author argues that ICU diaries, originally developed by nurses as an empathetic tool to support patient memory and recovery, carry an intrinsic value through their personal, handwritten approach, which AI-generated versions may lack. While Peschel et al. propose AI diaries to address nursing shortages, the article questions whether these digital records can truly replicate the personal, compassionate essence of traditional diaries. Without a clear purpose for ICU diaries, the article cautions that AI-generated versions could erode their intended supportive function, risking a shift toward impersonal documentation rather than meaningful patient care.
A great and surely ongoing discussion. We are thankful to Stijn, who initiated the debate and are curious for further arguments and developments
Pro: Peschel E, Krotsetis S, Nydahl P. Should we use artificial intelligence (AI) for writing ICU diaries? Yes! Intensive Crit Care Nurs. 2024 Oct 27;86:103867. doi: 10.1016/j.iccn.2024.103867
Con: Egerod I. Should we use artificial intelligence (AI) for writing ICU diaries? Not yet! Intensive Crit Care Nurs. 2024 Oct 27;86:103868
LifeMapp Diary
Last year, LifeMapp Diary was launched in France. LifeMapp Diary is a free, safe, web based ICU diary platform, developed with and for ICU professionals, patients and relatives by 101 Fund. After one year and a half, LifeMapp Diary is now successfully used in more than 15 ICUs in France!
LifeMapp Diary is now available in English and Portuguese. Next steps are translation for German, Spanish, Italian and Dutch: please contact us if you want to help with the translation or with the testing!
Next step will be to build innovative research projects around it, as our app makes it possible to extract anonymous utilization data! If you have ideas, please feel free to get in touch !
Link to the website Questions to Anne-Sophie
RELATED STUDIES
Some titles are hand selected and edited from the @ICURehab Newsletter by Dale M. Needham, Critical Care Reviews by Rob Mac Sweeney, and from our own searches.
Quality of Dying and Family Outcomes: In an observational study in Taiwanese intensive care units from 2019-2022, Wen et al. (2024) investigated the extent to which the mental health of relatives is related to their perception of the quality of end-of-life care. 309 relatives participated initially and 253 after one year: relatives shared information about their mental health and rated the process of death and dying in the ICU. If the dying process was assessed negatively, the probability of a poor mental state of the relatives was significantly increased. The authors conclude, that optimal physical symptom management, adequate psycho-spiritual support and avoidance of unnecessary life sustaining treatment is not only important for the dying patient, but also for the longtime outcomes of relatives. Wen et al (2024) from Taiwan Link
Write: Daily written updates for families of ICU patients supplement the verbal communication and support the team communication. Lee et al (2024) from the US Link
Resilience: in 382 ICU patients, resilient patients had a lower prevalence of PTSD symptoms and higher quality of life scores, compared to patients with low resilience. Higher scores for social support and illness perception were independently associated with greater resilience. The findings suggest that interventions to strengthen social support and improve illness
perception may help to improve resilience. Mathieu et al (2024) from France Link
Visitor Restrictions: In a meta synthesis of 184 studies examining the effects of visitor restrictions during the pandemic on patients, families, and staff, 54 different themes were identified. Visitor restrictions led to sometimes severe consequences for those affected and must be carefully considered. However, strategies were also developed to help mitigate these effects. (Krewulak et al., 2024) Link
Family & Delirium: In a Meta-Analysis with 11 RCT and 3,113 ICU patients, family involvement significantly reduces delirium in critically ill patients, with direct caregiving participation by family members being the most effective approach. Li et al (2024) Link
Anxiety: An analysis of 26 RCTs involving 2,791 intensive care patients demonstrated an effective anxiety-reducing effect from interventions such as music therapy, aromatherapy, ICU diaries, virtual reality, massage, and information & education. Meta-analysis by Ma et al. (2024) Link
PICS-Family: This randomised clinical cluster-crossover study found that a flexible visitation model in the ICU was associated with a significant reduction in the one-year prevalence of post-traumatic stress symptoms in family members (n=519). Barreto de Souza et al (2024) from Brazil, 2024 Link
ICU Café: Visiting an ICU café was important for former intensive care patients, offering them with the opportunity to meet peers with similar experiences and exchange stories; patients and their loved ones reported feeling less isolated as a result. Glaemose et al. (2024) from Denmark Link
Humanisation: A short audio message from patients during admission, answering four questions 1. How would you like to be addressed? 2. What brings you joy? 3. What does your medical team need to know to care for you optimally? 4. What brings you peace?—improved communication and empathy within the care team. Tracey et al. (2024) from the USA Link
You are safe here: a flyer with re-orientating messages for relatives of patients in delirium, is available in eleven different languages. Check the supplement for the flyer and use it in your hospital. Nydahl et al (2024) Link
Music: In an analysis of interviews on listening to personalised music during ventilation, 14 intensive care patients reported that the music helped them regain consciousness, activate cognitive abilities, humanise the hospital experience, connect with the outside world, improve personal well-being, and ease the issues associated with silence. Menza et al. (2024) from the USA Link
Long-term ICU Patients: In a Delphi process with 116 healthcare professionals, former patients, and families, 32 quality criteria were developed for the care of patients with prolonged ICU stays. These include transfer planning, regular case discussions, evaluation of rehabilitation measures, weaning, ICU-acquired weakness (ICUAW), nutrition, sleep, patient-centred activities, psychological support, and more. Allum et al. (2024) from the United Kingdom Link
Family: A nurse-led, family-centred intervention involving guideline-recommended emotional support and regular communication, compared to standard care, resulted in significant hospital cost reductions and lower 6-month readmission rates for 1,420 patients. Cluster-randomised study by Andersen et al. (2024) from the USA Link
PICS Clinic: Among 77 intensive care patients with an ICU stay of ≥7 days, follow-up in a PICS clinic after 6 months and further care up to 12 months revealed highly varied outcomes; the PICS clinic was very well received by patients. Maurer et al. (2024) from Switzerland Link
Psychologists in ICU: In France, a law mandating the presence of psychologists in intensive care units has been in effect since 2022. A survey of this profession revealed a diverse array of work settings, tasks, responsibilities, methods, and target groups (ICU patients and post-ICU survivors, families, staff), offering a promising model for other countries. Landbeck et al. (2024) from France Link
After Intensive Care: For many survivors, ICU treatment is only the beginning of a long journey, where planning of treatment, transfer, and follow-up care should be coordinated appropriately and early. Review by Teixeira et al. (2024) Link
Patient-Centred Outcomes: Which outcomes do patients and their families consider important? Thirty outcomes were identified (including neuro-muscular and physical functions, ADL, mental health, healthcare resources, experiences, performance, residence, quality of life, and participation) and are now set to be incorporated into a Core Outcome Set. Connolly et al. (2024) fron the UK Link
Self-Set Goals: In a two-year prospective cohort of 105 ICU survivors participating in a digitally supported rehabilitation program focused on achieving individual recovery goals, approximately half of participants’ goals were met, including going outdoors, moving around at home, and navigating their surroundings. Rose et al. (2024) from the UK Link
PEDIATRIC STUDIES
Post-Traumatic Growth/Decline: In a mixed-methods analysis involving 26 pediatric ICU patients aged 6 to 12 and their parents, two fundamental ways of coping with the ICU experience were identified: (post-traumatic) growth or failure. Both pathways can be influenced, so the authors recommend early psychological support for the children and their parents. Liu et al. (2024) from China Link
Stress symptoms in children: In a prospective cohort study Daughtrey at al. described stress symptoms of 88 children and parents after admission to the PICU. They found acute stress symptoms in 39% of the children and 56% of the parents. Parents´ stress was associated with increased risk of childrens´stress. The study therefore supports earlier findings that showed the connection between parental and child stress. Interventions must therefore always focus on the dyad between parent and child or on the family system. Daughtrey et al (2024) from the US Link
Near Death Experiences in children
A case study used verbal and non-verbal exploration methods to investigate the near death experiences of children after a stay in intensive care. The children described similar phenomena to those found in adults. The authors emphasize the relevance of children as an important group in research on near death experiences. Thomas et al. (2024) from the UK Link
Siblings: Siblings of sick children often receive less attention in the pediatric intensive care unit. In this qualitative study, a handful of parents were asked about their experiences with their healthy children, while their child with a heart condition is being treated in intensive care. Aspects that could be relevant for sibling support - and also for staff - are listed, both supportive and challenging. Butler et al (2024) from Australia Link
Humanisation in Pediatrics: An analysis of 100 studies on the implementation of humanised pediatric intensive care identified seven central themes: family participation, communication, satisfaction, staff care, PICS, end-of-life care, and infrastructure. Review by Garcia-Fernandez et al. (2024) Link
PTSD in Children: Among 65 children (median age 8 years) admitted to an ICU due to sepsis five years prior, one-third (30.8%) showed an increased risk of PTSD. Burcher et al. (2024) from the UK Link
Missing a study?
We can't read and summarize every study. If we missed an important study, please email us a brief summary and reference, and we'll be happy to include it in the newsletter!
Stay heathy and best wishes!
Teresa, Kristin, Chu-Won, Manuel & Peter
Dr. Teresa Deffner, Dipl.-Rehapsych. (FH), Psychologist in Intensive Care Medicine, University Hospital Jena, Germany
Kristin Gabriel, Media economist, art historian, and yoga teacher, Berlin
Dr. Chu-Won Sim, M.Sc. psychologist at the department of pediatric cardiology, Deutsches Herzzentrum der Charité (DHZC), Berlin, Germany
Manuel Köpper, M.Sc. Psychologist, Pediatric Intensive Care Unit, Tübingen University Hospital, Germany
Dr. Peter Nydahl, RN BScN MScN, Nursing Research, University Hospital of Schleswig-Holstein, Germany