Newsletter February
28/02/24 07:39 Filed in: News-Ticker
Dear friends of the ICU diary
We hope that you are all doing well!
This ICU Diary Newsletter has been sent to you by the German Society of Intensive Care Medicine, called DIVI. We moved to the DIVI and founded a new Section “ICU Rehabilitation”, including working groups for early mobilization and for family- and child friendly ICU, containing ICU Diaries. We continue with our work in this working groups, perform projects, share knowledge, and keep on networking.
As usual, we have summarized some studies about ICU diaries for you and report some other interesting papers, too!
Enjoy reading!
Teresa, Kristin, and Peter
DIARY STUDIES
Digital Diaries
Diaries are commonly used in international intensive care unit (ICU) settings as a paper & pencil diary, aligning with a patient-centered approach. In the Netherlands, van Mol. Et al. (2024) introduced digital ICU diaries as a web application named 'Post-ICU'. In a first step, the authors assessed the usability of this innovative digital diary from the perspective of ICU patients' relatives. They conducted a cross-sectional online survey among relatives of ICU patients from two hospitals in the Netherlands. Participants were asked to evaluate aspects such as layout, user-friendliness, and functionality of the digital diary using a researcher-designed questionnaire. Ratings were given on a scale of 1 to 10. In result, 63 relatives, averaging 51 years of age, participated in the study, with a slight majority being women (57%). Almost all participants (98%) found the digital diary easy to use and successfully uploaded photos. A significant number of participants (75%) invited other relatives, while 61% involved nurses in diary writing, considering it easily achievable (89%). On average, the diary's relevance was rated at 8.1 (±1.9) and applicability 8.3 (±1.6). The authors concluded that participants regarded the Post-ICU digital diary web application as highly valuable and easy to implement. Factors such as perceived ease of use, usefulness, and technophobia did not impact its usability. "Participants did not resist using the new digital tool; technophobia was found low and did not limit the usability of Post-ICU diary." Comment: the application of the web-application is not for free, the authors declare no conflicts.
van Mol MMC, Tummers N, Leerentveld C, Tieben R, Buise M. The usability of a digital diary from the perspectives of intensive care patients' relatives: A pilot study. Nurs Crit Care. 2023 Oct 27.
Opening Pandora’s Box: using ChatGPT for authoring ICU diaries
One of our nursing students Ella Peschel wrote her Bachelor’s thesis about ICU diaries with success. We encouraged her to go one step further and asked her if it would be feasible to use Artificial Intelligence such as ChatGPT for authoring diary entries, using the usual medical documentation. She published a provoking study protocol.
Utilizing artificial intelligence (AI) to generate diary entries from medical records offers a potential solution to nursing shortage and time constraints. Hence, a hypothetical study protocol has been developed. The design is a multi-center, mixed-method study aimed at assessing the usability and impact of AI-generated ICU diaries compared to handwritten ones. Handwritten ICU diaries will be authored by trained nursing staff and families for patients with expected length of stay of ≥72 hours. Additionally, AI software will analyze medical and nursing records at discharge, generating empathetic diary entries, which will be printed as a personalized booklet for patient use. At the time point of reading the diaries with patients and families, clinicians will read with patients and families the hand-written or AI-generated diary in random order, and answer question. One week later, patients and families will be interviewed about their experiences and fill in a questionnaire to evaluate diary usability. Patients and families will compare language and content between the diaries, potentially expressing concerns about AI data processing.
So far, interesting. Ella made a test and used (anonymous) common notes by physicians and nurses in medical records and asked ChatGPT to generate an empathic diary entry for “Mr. Smith”, and the result was not bad (reported in publication). In a study, a trained nurse would review the first attempt and improve the content and style. But this approach raises a lot of questions: Is it ethically justifiable to use AI-generated diaries, or could they potentially cause harm, such as by perpetuating gender, race, or other biases? Do AI-generated diaries support the essence of professional nursing with interaction and reflection? What about data protection? How should we react if a study finds out that AI-generated diaries are more effective than those written by humans? We think that these questions should be discussed and addressed, before conducting such a study.
Peschel E, Krotsetis S, Seidlein A-H, Nydahl P. Opening Pandora’s box by generating ICU diaries through artificial intelligence: A hypothetical study protocol. Intensive and Critical Care Nursing. 2024;82:103661.
Patients’ experiences of and with ICU diaries
Many surviving ICU patients experience psychological issues after critical care. Calzari et al (2024) implemented a pathway to humanize critical care including ICU diaries. In this context, the authors explored patients' experiences of reading diaries, assessed the meaning attributed to them, and studied patients' recollections during their stay on ICU. The authors performed a qualitative interview study with thematic analysis including eleven patients who received diaries in a cardiac ICU in Southern Switzerland. The Analysis five main themes and fifteen sub-themes: a) ICU experience; b) Post Intensive Care Syndrome symptoms; c) the patient diary; d) newfound meaning of life; and e) sharing. Patients struggled to recall and comprehend their hospitalization experiences, but reading the diary helped them understand the illness's impact on their daily lives. Patients’ quotes: “Of course it helped! Because it made me realize that a catastrophe had happened”; “During low mood moments, it gives me some motivation to react, to not breakdown, to stay strong despite the events.”. Some patients continued the diary “I started writing it on August 3rd, because I came out of intensive care on August 1st or 2nd, so I started writing it on the 3rd.”, and some mentioned gaps in the diary ““There are gaps in here. I used to wonder what had happened in the meantime…if something had happened but it was not written or if something serious had happened”. Some found solace and encouragement in the diary during moments of distress. Through a qualitative lens, this study examined patients' perceptions of ICU diaries within the cultural context of Central and Southern Europe, an area still underexplored in literature. Diaries addressed patients' need to comprehend events during periods of memory loss, offering valuable insights into the illness's effects on their lives and aiding in the healing process. Patients appreciated diaries throughout their recovery from severe illness, filling gaps in their narratives and providing a clearer timeline of their unconscious periods.
Calzari S, Villa M, Mauro S, Mirto V, Bulloni P, Zini P, Deelen P, Grassellini PR, Bernasconi S, Cassina T. The intensive care unit diary as a valuable care tool: A qualitative study of patients' experiences. Intensive Crit Care Nurs. 2024 Feb;80:103558.
ICU Diaries: a concept analysis (English/Spanish)
Muñoz-Rey et al (2024) performed a systematic literature review and a critical examination of the concept of the 'Intensive Care Unit Diary' to develop a clearer understanding of its role in nursing practice. The authors used Wilson’s concept analysis framework further developed by Walker and Avant. The final concept analysis reveals that the 'ICU Diary' is a narrative record, often written in everyday language by healthcare providers and family members of ICU patients. It serves to provide patients with an empathetic and reflective account of their experiences, detailing daily life and patient behavior during their stay. This therapeutic tool, endorsed by nurses and embraced by patients, families, and professionals alike, contributes to the recovery process by alleviating post-traumatic stress, fostering communication, strengthening bonds between stakeholders, and facilitating the expression of emotions. The authors conclude that the concept of the 'ICU Diary' is multifaceted and impactful. Through the application of Wilson's model, this study has clarified its conceptual boundaries, laying the groundwork for future research to explore its effects on patients, families, professionals, and the broader healthcare system.
Muñoz-Rey MP, Delgado-Hito P, Juvé-Udina ME, Cuzco-Cabellos C, Huertas-Zurriaga A, Romero-García M. The diary in the intensive care unit: Concept analysis. Enfermería Intensiva (English ed.), 2024
RELATED STUDIES
Family Care Journal: Tcharmtchi et al (2024) from the US introduced a Family Care Journal (FCJ) on a pediatric ICU. “The FCJ, developed by the hospital's Family-Centred Care Program, is a notebook that includes information about services the hospital pro- vides. In addition, it contains pages for parents to keep track of medications, procedures, names of care team members, and blank pages for questions and concerns”. The authors combined this tool with an online survey and analyzed more than 360 answers by parents. Both, the FCJ and the evaluation questionnaire, provides excellent feedback for implementing and adjusting family centered care. Tcharmtchi et al (2024) from the US Link
Rehab Diaries: On a community rehab inpatient ward, Little et al. developed a patient diary to inform families and friends about activities, progress and events that happened during the rehab sessions (in case patients cannot tell themselves). These diaries inform the families, reduce complaints and errors, and document the progress of rehab. Little et al (2023) from the UK Link
Only intubated patients? In a comparison of 133 intubated and non-intubated critically ill patients, almost half (47%) of both intubated and non-intubated ICU survivors reported clinically significant psychological symptoms at 3 and 12-month follow-ups. Furthermore, one third of patients experienced issues with their usual activities and one fifth in their mobility. The occurrence of psychological symptoms and impairments in Health-Related Quality of Life (HRQOL) was comparable between the two groups. Rai et al (2024) from Australia Link
Only long-term patients? Out of 132 ICU survivors with a stay of less than 72 hours, 17% were affected in at least one dimension of PICS after 6 months. This population group with a short ICU stay is often considered as "too short on ICU to have PICS", but they are at risk, too. We need more awareness of PICS. Flaws et al (2024) from Australia Link
How to assess PICS: Through a scoping review and the modified Delphi method, 20 assessment instruments for evaluating Physical, Cognitive, Mental Health, Activities of Daily Living, Quality of Life, Sleep, and Pain in ICU survivors and their families were identified and recommended. Nakanishi et al (2023) from Japan Link
Family participation: Application of a standardized program to facilitate family participation did not change mental health symptoms in 306 relatives of ICU patients 3 months after discharge. Clinicians reported increased clarity, knowledge, and skills among relatives and clinicians. Dijkstra et al (2023) from the Netherlands Link
Online information to reduce PTSD: Family members of critically ill patients often have significant PTSD symptoms. In 89 relatives, a website with online information on critical illness vs usual information did not result in reduced PTSD symptoms. Hoffmann et al (2023) from Austria Link
ICU liaison nurse: In a qualitative evaluation with 15 family members of recently discharged patients from ICU to general wards, an ICU liaison nurse support service met several needs of family members and therefore was a beneficial way to support patients and family members in the transition from the ICU to the ward. Boerenbeker et al (2022) from Sweden Link
Improving psychological outcome: in an umbrella review including 5,110 studies about care interventions on ICU to improve psychological outcome in critically ill patients, eight interventions with weak evidence were identified: music therapy, early rehabilitation, post-ICU follow-up, ICU diary, information intervention, preoperative education, communication and psychological support, surrogate decision-making. Zheng et al. 2023 Link
PTSD in relatives: modifiable and non-modifiable risk factors
A follow-up 3 months after ICU treatment, in which the PTSD symptoms of 2347 relatives were assessed using the IES-R, showed a prevalence of 33.5% for PTSD. Risk factors for the occurrence of PTSD were extracted based on various prediction models. Many of these were not modifiable: gender of relatives, death of the patient in the ICU, relationship to the patient (partnership or child of the patient), length of stay in the ICU. Among others, support from psychologists during the ICU stay was identified as a modifiable factor. Dupont et al, 2023 Link
IMPORTANCE: a new mnemonic helps to structure a post-ICU clinic: IMPORTANCE: ICU debriefing, medications and immunizations, PICS evaluation, organ failure assessment, referrals, testing, addressing future goals of care, needs assessment, caregiver support, and education about expectations. Flores et al (2023) from the US Link
Humanizing Delirium Care: former ICU patients with delirium mentioned that in delirium episodes, communication should be seen as important as any medical procedure. By providing Humanized Delirium Care, we support patients’ abilities to communicate, talk with them, recognize their experiences, and show empathy. Nydahl et al (2024) Link
World Delirium Awareness Day (WDAD): the next WDAD will be on March 13th, 2024. The theme of this year is “Humanizing Delirium Care”. We offer a contest for best memes and infographics about delirium, and point on a lot of webinars during the day, across the world. Have a look on deliriumday.com
Genius: Families of critical ill patients can send voice messages to the smartphone of the ICU staff, who play the message to the patients, even when these are in coma or sedated. Awesome idea by Teresa Deffner and the critical care nurse Anna Schwarze from Jena.
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 & 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. Peter Nydahl, RN BScN MScN, Nursing Research, University Hospital of Schleswig-Holstein, Germany
We hope that you are all doing well!
This ICU Diary Newsletter has been sent to you by the German Society of Intensive Care Medicine, called DIVI. We moved to the DIVI and founded a new Section “ICU Rehabilitation”, including working groups for early mobilization and for family- and child friendly ICU, containing ICU Diaries. We continue with our work in this working groups, perform projects, share knowledge, and keep on networking.
As usual, we have summarized some studies about ICU diaries for you and report some other interesting papers, too!
Enjoy reading!
Teresa, Kristin, and Peter
DIARY STUDIES
Digital Diaries
Diaries are commonly used in international intensive care unit (ICU) settings as a paper & pencil diary, aligning with a patient-centered approach. In the Netherlands, van Mol. Et al. (2024) introduced digital ICU diaries as a web application named 'Post-ICU'. In a first step, the authors assessed the usability of this innovative digital diary from the perspective of ICU patients' relatives. They conducted a cross-sectional online survey among relatives of ICU patients from two hospitals in the Netherlands. Participants were asked to evaluate aspects such as layout, user-friendliness, and functionality of the digital diary using a researcher-designed questionnaire. Ratings were given on a scale of 1 to 10. In result, 63 relatives, averaging 51 years of age, participated in the study, with a slight majority being women (57%). Almost all participants (98%) found the digital diary easy to use and successfully uploaded photos. A significant number of participants (75%) invited other relatives, while 61% involved nurses in diary writing, considering it easily achievable (89%). On average, the diary's relevance was rated at 8.1 (±1.9) and applicability 8.3 (±1.6). The authors concluded that participants regarded the Post-ICU digital diary web application as highly valuable and easy to implement. Factors such as perceived ease of use, usefulness, and technophobia did not impact its usability. "Participants did not resist using the new digital tool; technophobia was found low and did not limit the usability of Post-ICU diary." Comment: the application of the web-application is not for free, the authors declare no conflicts.
van Mol MMC, Tummers N, Leerentveld C, Tieben R, Buise M. The usability of a digital diary from the perspectives of intensive care patients' relatives: A pilot study. Nurs Crit Care. 2023 Oct 27.
Opening Pandora’s Box: using ChatGPT for authoring ICU diaries
One of our nursing students Ella Peschel wrote her Bachelor’s thesis about ICU diaries with success. We encouraged her to go one step further and asked her if it would be feasible to use Artificial Intelligence such as ChatGPT for authoring diary entries, using the usual medical documentation. She published a provoking study protocol.
Utilizing artificial intelligence (AI) to generate diary entries from medical records offers a potential solution to nursing shortage and time constraints. Hence, a hypothetical study protocol has been developed. The design is a multi-center, mixed-method study aimed at assessing the usability and impact of AI-generated ICU diaries compared to handwritten ones. Handwritten ICU diaries will be authored by trained nursing staff and families for patients with expected length of stay of ≥72 hours. Additionally, AI software will analyze medical and nursing records at discharge, generating empathetic diary entries, which will be printed as a personalized booklet for patient use. At the time point of reading the diaries with patients and families, clinicians will read with patients and families the hand-written or AI-generated diary in random order, and answer question. One week later, patients and families will be interviewed about their experiences and fill in a questionnaire to evaluate diary usability. Patients and families will compare language and content between the diaries, potentially expressing concerns about AI data processing.
So far, interesting. Ella made a test and used (anonymous) common notes by physicians and nurses in medical records and asked ChatGPT to generate an empathic diary entry for “Mr. Smith”, and the result was not bad (reported in publication). In a study, a trained nurse would review the first attempt and improve the content and style. But this approach raises a lot of questions: Is it ethically justifiable to use AI-generated diaries, or could they potentially cause harm, such as by perpetuating gender, race, or other biases? Do AI-generated diaries support the essence of professional nursing with interaction and reflection? What about data protection? How should we react if a study finds out that AI-generated diaries are more effective than those written by humans? We think that these questions should be discussed and addressed, before conducting such a study.
Peschel E, Krotsetis S, Seidlein A-H, Nydahl P. Opening Pandora’s box by generating ICU diaries through artificial intelligence: A hypothetical study protocol. Intensive and Critical Care Nursing. 2024;82:103661.
Patients’ experiences of and with ICU diaries
Many surviving ICU patients experience psychological issues after critical care. Calzari et al (2024) implemented a pathway to humanize critical care including ICU diaries. In this context, the authors explored patients' experiences of reading diaries, assessed the meaning attributed to them, and studied patients' recollections during their stay on ICU. The authors performed a qualitative interview study with thematic analysis including eleven patients who received diaries in a cardiac ICU in Southern Switzerland. The Analysis five main themes and fifteen sub-themes: a) ICU experience; b) Post Intensive Care Syndrome symptoms; c) the patient diary; d) newfound meaning of life; and e) sharing. Patients struggled to recall and comprehend their hospitalization experiences, but reading the diary helped them understand the illness's impact on their daily lives. Patients’ quotes: “Of course it helped! Because it made me realize that a catastrophe had happened”; “During low mood moments, it gives me some motivation to react, to not breakdown, to stay strong despite the events.”. Some patients continued the diary “I started writing it on August 3rd, because I came out of intensive care on August 1st or 2nd, so I started writing it on the 3rd.”, and some mentioned gaps in the diary ““There are gaps in here. I used to wonder what had happened in the meantime…if something had happened but it was not written or if something serious had happened”. Some found solace and encouragement in the diary during moments of distress. Through a qualitative lens, this study examined patients' perceptions of ICU diaries within the cultural context of Central and Southern Europe, an area still underexplored in literature. Diaries addressed patients' need to comprehend events during periods of memory loss, offering valuable insights into the illness's effects on their lives and aiding in the healing process. Patients appreciated diaries throughout their recovery from severe illness, filling gaps in their narratives and providing a clearer timeline of their unconscious periods.
Calzari S, Villa M, Mauro S, Mirto V, Bulloni P, Zini P, Deelen P, Grassellini PR, Bernasconi S, Cassina T. The intensive care unit diary as a valuable care tool: A qualitative study of patients' experiences. Intensive Crit Care Nurs. 2024 Feb;80:103558.
ICU Diaries: a concept analysis (English/Spanish)
Muñoz-Rey et al (2024) performed a systematic literature review and a critical examination of the concept of the 'Intensive Care Unit Diary' to develop a clearer understanding of its role in nursing practice. The authors used Wilson’s concept analysis framework further developed by Walker and Avant. The final concept analysis reveals that the 'ICU Diary' is a narrative record, often written in everyday language by healthcare providers and family members of ICU patients. It serves to provide patients with an empathetic and reflective account of their experiences, detailing daily life and patient behavior during their stay. This therapeutic tool, endorsed by nurses and embraced by patients, families, and professionals alike, contributes to the recovery process by alleviating post-traumatic stress, fostering communication, strengthening bonds between stakeholders, and facilitating the expression of emotions. The authors conclude that the concept of the 'ICU Diary' is multifaceted and impactful. Through the application of Wilson's model, this study has clarified its conceptual boundaries, laying the groundwork for future research to explore its effects on patients, families, professionals, and the broader healthcare system.
Muñoz-Rey MP, Delgado-Hito P, Juvé-Udina ME, Cuzco-Cabellos C, Huertas-Zurriaga A, Romero-García M. The diary in the intensive care unit: Concept analysis. Enfermería Intensiva (English ed.), 2024
RELATED STUDIES
Family Care Journal: Tcharmtchi et al (2024) from the US introduced a Family Care Journal (FCJ) on a pediatric ICU. “The FCJ, developed by the hospital's Family-Centred Care Program, is a notebook that includes information about services the hospital pro- vides. In addition, it contains pages for parents to keep track of medications, procedures, names of care team members, and blank pages for questions and concerns”. The authors combined this tool with an online survey and analyzed more than 360 answers by parents. Both, the FCJ and the evaluation questionnaire, provides excellent feedback for implementing and adjusting family centered care. Tcharmtchi et al (2024) from the US Link
Rehab Diaries: On a community rehab inpatient ward, Little et al. developed a patient diary to inform families and friends about activities, progress and events that happened during the rehab sessions (in case patients cannot tell themselves). These diaries inform the families, reduce complaints and errors, and document the progress of rehab. Little et al (2023) from the UK Link
Only intubated patients? In a comparison of 133 intubated and non-intubated critically ill patients, almost half (47%) of both intubated and non-intubated ICU survivors reported clinically significant psychological symptoms at 3 and 12-month follow-ups. Furthermore, one third of patients experienced issues with their usual activities and one fifth in their mobility. The occurrence of psychological symptoms and impairments in Health-Related Quality of Life (HRQOL) was comparable between the two groups. Rai et al (2024) from Australia Link
Only long-term patients? Out of 132 ICU survivors with a stay of less than 72 hours, 17% were affected in at least one dimension of PICS after 6 months. This population group with a short ICU stay is often considered as "too short on ICU to have PICS", but they are at risk, too. We need more awareness of PICS. Flaws et al (2024) from Australia Link
How to assess PICS: Through a scoping review and the modified Delphi method, 20 assessment instruments for evaluating Physical, Cognitive, Mental Health, Activities of Daily Living, Quality of Life, Sleep, and Pain in ICU survivors and their families were identified and recommended. Nakanishi et al (2023) from Japan Link
Family participation: Application of a standardized program to facilitate family participation did not change mental health symptoms in 306 relatives of ICU patients 3 months after discharge. Clinicians reported increased clarity, knowledge, and skills among relatives and clinicians. Dijkstra et al (2023) from the Netherlands Link
Online information to reduce PTSD: Family members of critically ill patients often have significant PTSD symptoms. In 89 relatives, a website with online information on critical illness vs usual information did not result in reduced PTSD symptoms. Hoffmann et al (2023) from Austria Link
ICU liaison nurse: In a qualitative evaluation with 15 family members of recently discharged patients from ICU to general wards, an ICU liaison nurse support service met several needs of family members and therefore was a beneficial way to support patients and family members in the transition from the ICU to the ward. Boerenbeker et al (2022) from Sweden Link
Improving psychological outcome: in an umbrella review including 5,110 studies about care interventions on ICU to improve psychological outcome in critically ill patients, eight interventions with weak evidence were identified: music therapy, early rehabilitation, post-ICU follow-up, ICU diary, information intervention, preoperative education, communication and psychological support, surrogate decision-making. Zheng et al. 2023 Link
PTSD in relatives: modifiable and non-modifiable risk factors
A follow-up 3 months after ICU treatment, in which the PTSD symptoms of 2347 relatives were assessed using the IES-R, showed a prevalence of 33.5% for PTSD. Risk factors for the occurrence of PTSD were extracted based on various prediction models. Many of these were not modifiable: gender of relatives, death of the patient in the ICU, relationship to the patient (partnership or child of the patient), length of stay in the ICU. Among others, support from psychologists during the ICU stay was identified as a modifiable factor. Dupont et al, 2023 Link
IMPORTANCE: a new mnemonic helps to structure a post-ICU clinic: IMPORTANCE: ICU debriefing, medications and immunizations, PICS evaluation, organ failure assessment, referrals, testing, addressing future goals of care, needs assessment, caregiver support, and education about expectations. Flores et al (2023) from the US Link
Humanizing Delirium Care: former ICU patients with delirium mentioned that in delirium episodes, communication should be seen as important as any medical procedure. By providing Humanized Delirium Care, we support patients’ abilities to communicate, talk with them, recognize their experiences, and show empathy. Nydahl et al (2024) Link
World Delirium Awareness Day (WDAD): the next WDAD will be on March 13th, 2024. The theme of this year is “Humanizing Delirium Care”. We offer a contest for best memes and infographics about delirium, and point on a lot of webinars during the day, across the world. Have a look on deliriumday.com
Genius: Families of critical ill patients can send voice messages to the smartphone of the ICU staff, who play the message to the patients, even when these are in coma or sedated. Awesome idea by Teresa Deffner and the critical care nurse Anna Schwarze from Jena.
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 & 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. Peter Nydahl, RN BScN MScN, Nursing Research, University Hospital of Schleswig-Holstein, Germany