Newsletter June 2024
22/06/24 09:20 Filed in: News-Ticker
Dear friends of the ICU diary
We hope that you are all doing well!
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
Photographs in burn patient diaries
There is a long discussion about the use photos of patients in ICU diaries, due to legal aspects, data protection, privacy, risk of flash backs, and other aspects, but in general, patients appreciate photos! But does this also refer to burn patients? Daltveit et al (2024) from Norway performed a qualitative study, including individual interviews with six former patients (age 20-77 years) and two focus group interviews with 11 nurses from Burn ICUs. ICU Diaries have been used over more than 20 years, including written entries and photos. Interviews were analyzed by thematic analysis. In the findings, three main themes emerged: hesitating when facing photos, visualizing others' care, and visualizing the trajectory from burn trauma to recovery. Despite initial concerns from patients about the photos and fears from nurses about choosing frightening images, the photos were generally well-received (Quote: "Should I dare open the book"). Patients appreciated the photos for filling memory gaps, providing more information than words, and offering an honest depiction ("It was not as bad as I thought"). Photos of family, friends, or staff were particularly valued for illustrating shared experiences and supporting recovery ("Photos that ... I was well taken care of", "You can see the progress, you know"). The authors conclude that both burn patients and burn intensive care nurses found photos to be an essential part of the diaries, offering context and a factual presentation of the treatment and recovery journey. Burn ICUs are a very special setting and so is the rehabilitation. These findings and conclusions might be extrapolated to other settings and populations, but we should be careful with generalizing photos for every ICU patient. Photos are a voluntary opportunity, to reflect the stay on ICU, to remember the experiences, and to deal with them. Sometimes it might be overwhelming and asking patients for consent and their ability to cope with it is a good choice.
Daltveit S, Kleppe L, Petterteig MO, Moi AL. Photographs in burn patient diaries: A qualitative study of patients' and nurses' experiences. Intensive Crit Care Nurs. 2024 Jun;82:103619.
Diaries for patients on ECMO
Diaries in ICUs are known to reduce post-intensive care syndrome for survivors and their families. indicates that ICU diaries can fill memory gaps and resolve delusional memories, but little is known about nurses’ experiences writing in these diaries for patients with ECMO. Norton et al (2024) from the US performed a phenomenological qualitative study with 15 ECMO nurses' to explore their experiences writing caring notes in diaries during patients' ICU stays. Using semi-structured, one-on-one interviews that were audiotaped and transcribed, the authors analyzed the data for themes, subcategories, and indicators. In the findings, three main themes emerged: a) addressing the nurse, family, and patient (quote: “I know there could be lots of reasons not to write in the diary, but if you look at it from a different angle, there could be many reasons to write in the diary. A couple of minutes to jot down a few things that could have a lifetime impact on somebody”); b) highlighting both positive and negative aspects of diary writing; and c) identifying barriers (quote: “The biggest challenge I faced when writing in the diary was knowing what to write. What is right to write in there and what is wrong to write”, but also: “I don’t like the way I write; I hate my penmanship and I don’t want people reading what I would write”). Of the 340 comments recorded, 88% were positive. Overall, nurses found diary writing beneficial for themselves, the families, and the patients. This practice may help nurses to reconnect with the core of their profession, the authors mention “Diary writing may help nurses get back to the core of why we do what they do”. Understanding nurses’ experiences can enhance communication, family satisfaction, and the effectiveness of diary programs.
Norton T, Chechel L, Sanchez C, Terterian G. A Qualitative Study to Explore the Nurses' Experience of Writing Caring Notes in Diaries for Extracorporeal Oxygenation Membrane (ECMO) Patients: Explore the nurse's experience. Crit Care Nurs Q. 2024 Jul-Sep 01;47(3):184-192
Initiating and writing diaries
ICU Diaries can help patients fill memory gaps, understand their illness post-discharge, and aid in recovery. However, nurses face challenges in determining which patients should receive diaries and how to prioritize this intervention. This study aimed to explore critical care nurses' perspectives on initiating and writing diaries for adult ICU patients. Gundersen et al (2024) from Norway performed a qualitative, exploratory descriptive study, involving interviews with 14 critical care nurses from four hospitals. Data were analyzed using systematic text condensation. In the findings, three core categories were identified: a) Patients' disease trajectories and prognoses, including subgroups of expected long and complicated trajectories, hope of survival, and awake ICU patients (quote: “At first, I thought they were awake; what's the point of writing a diary then. In retrospect after we have had follow-up meeting, I can see that they [patients] benefitted from it [diary]. Because they don't remember anything”; b) Tailoring content and language to the individual patient, including groups of individual content adaption, and writing to non-native speakers (quote: “I think I choose a ‘safe zone’. I just write a general description. Let's say ... that the patient was in a car accident. I don't go into the reasons the patient intended to commit suicide”; c) Balancing time and resources to create diaries that benefit patients, including subgroups of late start of diary writing is a barrier, and diary writing is not prioritized when there are more important tasks (quote “When the shift is almost finished, it's not certain that you'll have done all the tasks on your work list, and then you have to decide what to prioritize, and (so) the diary comes last.”. The authors conclude that nurses' decisions about diaries are influenced by patients' disease trajectories and prognoses, which can change rapidly, complicating assessments. Ensuring high-quality diaries requires personalizing language and content. The time and resources devoted to diaries are weighed against patient benefits, but contributions from colleagues and recognition of diary’s value being crucial for success.
Gundersen S, Blikstad-Løkkevik S, Brenna G, Steindal SA, Kvande ME. Critical care nurses' assessment of writing diaries for adult patients in the intensive care unit - A qualitative study. Aust Crit Care. 2024 Apr 15:S1036-7314(24)00052-3
Use and application of ICU Diaries
ICU diaries help with psychological recovery in critical care patients, but diary practices vary widely. Few studies have examined the combined views of ICU patients, family members, and nursing staff on diary use. Johansson et al (2024) from Sweden explored the use of ICU diaries in four Swedish ICUs to contribute to practice guidelines on their structure, content, and use. Three focus group interviews were conducted with 8 former patients and 5 family members. Additionally, individual interviews were conducted with 2 patients, a family member, and a nurse. Observations, field notes, documentary analysis, and conversations with nursing staff were also included. The comparison of the four ICUs were interesting: all ICUs had voluntary diary writing, physical Din A 5 format, a page about patient’s habits, glossary, generic photos of equipment (except one ICU), all included photos (two ICU placed them immediately into the diary, two at follow-up meetings), and yes, all ICUs had a follow-up meeting with patients/families, and gave feedback to the ICU staff. The thematic analysis identified four themes in patients' and family members' use of the diaries: a) understanding the situation; b) receiving warm, personalized care; c) managing existential issues; and d) using the diary in daily activities. The authors recommend inclusion of ICU-diary-practice-guidelines.
Johansson M, Wåhlin I, Magnusson L, Hanson E (2024) The use and application of intensive care unit diaries: An instrumental multiple case study. PLoS ONE 19(2): e0298538.
Digital Diaries: facilitators and barriers
The implementation of digital ICU diaries seems to be promising but comes with a lot of challenges. Understanding the facilitators and barriers among stakeholders is crucial for effective integration of digital diaries in ICUs. Schol et al. (2024) from the Netherlands performed a qualitative study, using focus group interviews with 32 professionals from four Dutch ICUs and individual interviews with 10 ICU survivors and relatives. Data were analyzed using a mixed inductive-deductive approach. Key facilitators for professionals included a user-friendly interface accessible anytime, a simple login process, comprehensive training, and feedback from patients and relatives. Barriers for professionals included a complex access process and resistance to writing diary entries. Conversely, ICU survivors and relatives appreciated professionals' involvement in writing diary entries. Sharing the diary raised privacy concerns despite its perceived value. This study identifies key factors influencing the implementation of digital ICU diaries. Notably, some factors act as both barriers and facilitators. The identified facilitators can help overcome barriers faced by ICU professionals, survivors, and their relatives in adopting digital diaries.
Schol CMA, van Mol MMC, Berger E, Leerentveld C, Gommers DAMPJ, Ista E. Implementation of a digital diary in the intensive care unit; understanding the facilitators and barriers: A qualitative exploration. Aust Crit Care. 2024 May 7:S1036-7314(24)00075-4.
Diaries in Neonatal ICU (NICU)
Parents of preterm infants often suffer from stress, anxiety, sleep disorders, and other intense feelings. Li et al (2024) from China examined the effects of web NICU diaries on the mental health, quality of life, sleep quality, care ability, and hormone levels of 70 parents of preterm infants in a randomized, controlled trial (intervention: 35, control: 35). The control group received routine NICU care, while the intervention group received a web NICU diary in addition to routine care. Outcomes, including anxiety, depression, PTSD symptoms, quality of life, sleep quality, care ability, and cortisol and melatonin levels, were evaluated at T1 (before the intervention), T2 (immediately after), and T3 (1 month after). In result, anxiety scores were significantly lower in the intervention group at T2 and T3 (p < 0.001). Care ability scores were significantly higher in the intervention group at T2 and T3 (p < 0.001). Some effects might be overrated. No significant differences were observed in quality of life, sleep quality, cortisol, or melatonin levels. Writing web NICU diaries may reduce anxiety and improve care abilities in parents of preterm infants.
Li X, Lin Y, Huang L, Lin H, Cheng X, Li S, Hu R, Liao J. Effects of web neonatal intensive care unit diaries on the mental health, quality of life, sleep quality, care ability, and hormone levels of parents of preterm infants in the neonatal intensive care unit: A randomized controlled trial. Intensive Crit Care Nurs. 2024 Aug;83:103697
Nurses’ and parents’ view on diaries in Neonatal ICU
NICU diaries can help family members cope, but a clear theoretical framework and evidence on nurses' application is lacking. Willmeroth (2024) from Germany investigated how nurses use NICU diaries to support family members and to develop an evidence-based framework for diary usage. This qualitative study included 12 narrative interviews with nurses from six hospitals and two focus group interviews with nine parents from two hospitals. Data were analyzed inductively via content analysis and combined using graphical coding. In the main findings, four main categories emerged: a) Usage: three types of authoring NICU diaries were identified, by nurses, parents, or both; b) Content: consists of the diary's title, introduction, textual, and nontextual components; c) Function: Three subcategories support parental coping: i) strengthening the parental role, ii) aiding understanding of events, and iii) bringing joy and normality; e) Challenges: Include appropriate writing style, nurses reading parental entries, and limited resources. Based on these findings and relevant literature, a framework for NICU diary conceptualization was developed. Interestingly, grown-up babies are interested in the diary, too. One parent mentioned: “Our daughter, who has now turned three, is very interested in the photos and to hear [...] Why did she look like that?” NICU diaries have significant potential to support parental coping. However, a theoretical framework is needed to clarify their usage for nurses and parents.
Willmeroth T. Nurses' and Parents' View on Neonatal Intensive Care Unit Diaries: A Qualitative Study and Framework Conceptualization. Am J Perinatol. 2024 May;41(S 01):e1800-e1812
Project for developing a position statement: use of diaries in the neonatal and paediatric intensive care settings
The European Society of Paediatric and Neonatal Intensive Care (ESPNIC) are collaboratively producing a census position statement on the use of diaries in the neonatal and paediatric intensive care settings. There is scant evidence supporting the impact of diaries in these areas, and although some evidence can be extrapolated from the adult ICU population, the experience of the baby, child and their family is different.
Led by Dr Orsola Gawronski, Dr Fiona Lynch, Professor Anne-Sylvie Ramelet, and Dr Vincenza Sansone, the aim of this group is to produce guidance on the best approach, considerations, and advice on how to implement diaries in the NICU or PICU.
This work has adopted a systematic approach, with engagement with nurses, doctors, psychologists, and families from across Europe. If you are interested in being involved and are a member of ESPNIC please contact Fiona Lynch at Fiona.lynch@gosh.nhs.uk for further information.
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.
Mortality: In 195,702 ICU survivors, 3-year mortality, relevant outcome parameter were readmission rates, & expenses were the worst within 6 months of discharge. Kang et al (2024) from South Korea Link
Outcome in Neurocritical Care: a review identified 74 studies reporting cognitive, mental health, health-related quality of life (HRQoL), and employment outcomes in neurocritical care patients. Labuzetta et al (2024) Link
ARDS & ECMO: in a meta-analysis of 32 studies of patients with ARDS, comparing ECMO vs conventional mechanically ventilation, the quality of life of survivors was similar. Turgeon et al (2024) Link
Sleep: in 260 ICU patients after ARDS due to Covid-19 after 12 months, sleep quality was poor in 40% of survivors, assessed with the Pittsburgh Sleep Quality Index, and a disturbed fragmentation of the circadian rest-activity rhythm. Henríquez-Beltrán et al (2024) from Spain Link
QoL: in 590 persons (395 ICU survivors and 195 age- & gender-matched controls), consequences of post-ICU issues may play a more significant role in affecting QoL than the issues themselves. Malmgren et al (2024) from Sweden Link
Peer support: in a feasibility trial with 80 surviving ICU patients, an in-person attendance peer-support group was feasible, especially 4-6 weeks post hospital discharge, compared to 2-3 weeks. Haines et al (2024) from Australia Link
Frailty: in a large group of 531 ICU patients with a stay ≥7 days, 33.6% were frail (CFS ≥5), 37.6% pre-frail (CFS 3-4), and 28.8% non-frail (CFS 1-2). Frail patients had a higher 6-month mortality and reduced physical function, but not reduced mental health function. Wozniak et al (2024) from Switzerland Link
PICS: From bedside to recovery: exercise therapy for prevention of post-intensive care syndrome. Excellent review by Liu et al (2024) Link
PICS-F: Post Intensive care syndrome family: A comprehensive review by Shirasaki et al (2024) 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 & 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!
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
Photographs in burn patient diaries
There is a long discussion about the use photos of patients in ICU diaries, due to legal aspects, data protection, privacy, risk of flash backs, and other aspects, but in general, patients appreciate photos! But does this also refer to burn patients? Daltveit et al (2024) from Norway performed a qualitative study, including individual interviews with six former patients (age 20-77 years) and two focus group interviews with 11 nurses from Burn ICUs. ICU Diaries have been used over more than 20 years, including written entries and photos. Interviews were analyzed by thematic analysis. In the findings, three main themes emerged: hesitating when facing photos, visualizing others' care, and visualizing the trajectory from burn trauma to recovery. Despite initial concerns from patients about the photos and fears from nurses about choosing frightening images, the photos were generally well-received (Quote: "Should I dare open the book"). Patients appreciated the photos for filling memory gaps, providing more information than words, and offering an honest depiction ("It was not as bad as I thought"). Photos of family, friends, or staff were particularly valued for illustrating shared experiences and supporting recovery ("Photos that ... I was well taken care of", "You can see the progress, you know"). The authors conclude that both burn patients and burn intensive care nurses found photos to be an essential part of the diaries, offering context and a factual presentation of the treatment and recovery journey. Burn ICUs are a very special setting and so is the rehabilitation. These findings and conclusions might be extrapolated to other settings and populations, but we should be careful with generalizing photos for every ICU patient. Photos are a voluntary opportunity, to reflect the stay on ICU, to remember the experiences, and to deal with them. Sometimes it might be overwhelming and asking patients for consent and their ability to cope with it is a good choice.
Daltveit S, Kleppe L, Petterteig MO, Moi AL. Photographs in burn patient diaries: A qualitative study of patients' and nurses' experiences. Intensive Crit Care Nurs. 2024 Jun;82:103619.
Diaries for patients on ECMO
Diaries in ICUs are known to reduce post-intensive care syndrome for survivors and their families. indicates that ICU diaries can fill memory gaps and resolve delusional memories, but little is known about nurses’ experiences writing in these diaries for patients with ECMO. Norton et al (2024) from the US performed a phenomenological qualitative study with 15 ECMO nurses' to explore their experiences writing caring notes in diaries during patients' ICU stays. Using semi-structured, one-on-one interviews that were audiotaped and transcribed, the authors analyzed the data for themes, subcategories, and indicators. In the findings, three main themes emerged: a) addressing the nurse, family, and patient (quote: “I know there could be lots of reasons not to write in the diary, but if you look at it from a different angle, there could be many reasons to write in the diary. A couple of minutes to jot down a few things that could have a lifetime impact on somebody”); b) highlighting both positive and negative aspects of diary writing; and c) identifying barriers (quote: “The biggest challenge I faced when writing in the diary was knowing what to write. What is right to write in there and what is wrong to write”, but also: “I don’t like the way I write; I hate my penmanship and I don’t want people reading what I would write”). Of the 340 comments recorded, 88% were positive. Overall, nurses found diary writing beneficial for themselves, the families, and the patients. This practice may help nurses to reconnect with the core of their profession, the authors mention “Diary writing may help nurses get back to the core of why we do what they do”. Understanding nurses’ experiences can enhance communication, family satisfaction, and the effectiveness of diary programs.
Norton T, Chechel L, Sanchez C, Terterian G. A Qualitative Study to Explore the Nurses' Experience of Writing Caring Notes in Diaries for Extracorporeal Oxygenation Membrane (ECMO) Patients: Explore the nurse's experience. Crit Care Nurs Q. 2024 Jul-Sep 01;47(3):184-192
Initiating and writing diaries
ICU Diaries can help patients fill memory gaps, understand their illness post-discharge, and aid in recovery. However, nurses face challenges in determining which patients should receive diaries and how to prioritize this intervention. This study aimed to explore critical care nurses' perspectives on initiating and writing diaries for adult ICU patients. Gundersen et al (2024) from Norway performed a qualitative, exploratory descriptive study, involving interviews with 14 critical care nurses from four hospitals. Data were analyzed using systematic text condensation. In the findings, three core categories were identified: a) Patients' disease trajectories and prognoses, including subgroups of expected long and complicated trajectories, hope of survival, and awake ICU patients (quote: “At first, I thought they were awake; what's the point of writing a diary then. In retrospect after we have had follow-up meeting, I can see that they [patients] benefitted from it [diary]. Because they don't remember anything”; b) Tailoring content and language to the individual patient, including groups of individual content adaption, and writing to non-native speakers (quote: “I think I choose a ‘safe zone’. I just write a general description. Let's say ... that the patient was in a car accident. I don't go into the reasons the patient intended to commit suicide”; c) Balancing time and resources to create diaries that benefit patients, including subgroups of late start of diary writing is a barrier, and diary writing is not prioritized when there are more important tasks (quote “When the shift is almost finished, it's not certain that you'll have done all the tasks on your work list, and then you have to decide what to prioritize, and (so) the diary comes last.”. The authors conclude that nurses' decisions about diaries are influenced by patients' disease trajectories and prognoses, which can change rapidly, complicating assessments. Ensuring high-quality diaries requires personalizing language and content. The time and resources devoted to diaries are weighed against patient benefits, but contributions from colleagues and recognition of diary’s value being crucial for success.
Gundersen S, Blikstad-Løkkevik S, Brenna G, Steindal SA, Kvande ME. Critical care nurses' assessment of writing diaries for adult patients in the intensive care unit - A qualitative study. Aust Crit Care. 2024 Apr 15:S1036-7314(24)00052-3
Use and application of ICU Diaries
ICU diaries help with psychological recovery in critical care patients, but diary practices vary widely. Few studies have examined the combined views of ICU patients, family members, and nursing staff on diary use. Johansson et al (2024) from Sweden explored the use of ICU diaries in four Swedish ICUs to contribute to practice guidelines on their structure, content, and use. Three focus group interviews were conducted with 8 former patients and 5 family members. Additionally, individual interviews were conducted with 2 patients, a family member, and a nurse. Observations, field notes, documentary analysis, and conversations with nursing staff were also included. The comparison of the four ICUs were interesting: all ICUs had voluntary diary writing, physical Din A 5 format, a page about patient’s habits, glossary, generic photos of equipment (except one ICU), all included photos (two ICU placed them immediately into the diary, two at follow-up meetings), and yes, all ICUs had a follow-up meeting with patients/families, and gave feedback to the ICU staff. The thematic analysis identified four themes in patients' and family members' use of the diaries: a) understanding the situation; b) receiving warm, personalized care; c) managing existential issues; and d) using the diary in daily activities. The authors recommend inclusion of ICU-diary-practice-guidelines.
Johansson M, Wåhlin I, Magnusson L, Hanson E (2024) The use and application of intensive care unit diaries: An instrumental multiple case study. PLoS ONE 19(2): e0298538.
Digital Diaries: facilitators and barriers
The implementation of digital ICU diaries seems to be promising but comes with a lot of challenges. Understanding the facilitators and barriers among stakeholders is crucial for effective integration of digital diaries in ICUs. Schol et al. (2024) from the Netherlands performed a qualitative study, using focus group interviews with 32 professionals from four Dutch ICUs and individual interviews with 10 ICU survivors and relatives. Data were analyzed using a mixed inductive-deductive approach. Key facilitators for professionals included a user-friendly interface accessible anytime, a simple login process, comprehensive training, and feedback from patients and relatives. Barriers for professionals included a complex access process and resistance to writing diary entries. Conversely, ICU survivors and relatives appreciated professionals' involvement in writing diary entries. Sharing the diary raised privacy concerns despite its perceived value. This study identifies key factors influencing the implementation of digital ICU diaries. Notably, some factors act as both barriers and facilitators. The identified facilitators can help overcome barriers faced by ICU professionals, survivors, and their relatives in adopting digital diaries.
Schol CMA, van Mol MMC, Berger E, Leerentveld C, Gommers DAMPJ, Ista E. Implementation of a digital diary in the intensive care unit; understanding the facilitators and barriers: A qualitative exploration. Aust Crit Care. 2024 May 7:S1036-7314(24)00075-4.
Diaries in Neonatal ICU (NICU)
Parents of preterm infants often suffer from stress, anxiety, sleep disorders, and other intense feelings. Li et al (2024) from China examined the effects of web NICU diaries on the mental health, quality of life, sleep quality, care ability, and hormone levels of 70 parents of preterm infants in a randomized, controlled trial (intervention: 35, control: 35). The control group received routine NICU care, while the intervention group received a web NICU diary in addition to routine care. Outcomes, including anxiety, depression, PTSD symptoms, quality of life, sleep quality, care ability, and cortisol and melatonin levels, were evaluated at T1 (before the intervention), T2 (immediately after), and T3 (1 month after). In result, anxiety scores were significantly lower in the intervention group at T2 and T3 (p < 0.001). Care ability scores were significantly higher in the intervention group at T2 and T3 (p < 0.001). Some effects might be overrated. No significant differences were observed in quality of life, sleep quality, cortisol, or melatonin levels. Writing web NICU diaries may reduce anxiety and improve care abilities in parents of preterm infants.
Li X, Lin Y, Huang L, Lin H, Cheng X, Li S, Hu R, Liao J. Effects of web neonatal intensive care unit diaries on the mental health, quality of life, sleep quality, care ability, and hormone levels of parents of preterm infants in the neonatal intensive care unit: A randomized controlled trial. Intensive Crit Care Nurs. 2024 Aug;83:103697
Nurses’ and parents’ view on diaries in Neonatal ICU
NICU diaries can help family members cope, but a clear theoretical framework and evidence on nurses' application is lacking. Willmeroth (2024) from Germany investigated how nurses use NICU diaries to support family members and to develop an evidence-based framework for diary usage. This qualitative study included 12 narrative interviews with nurses from six hospitals and two focus group interviews with nine parents from two hospitals. Data were analyzed inductively via content analysis and combined using graphical coding. In the main findings, four main categories emerged: a) Usage: three types of authoring NICU diaries were identified, by nurses, parents, or both; b) Content: consists of the diary's title, introduction, textual, and nontextual components; c) Function: Three subcategories support parental coping: i) strengthening the parental role, ii) aiding understanding of events, and iii) bringing joy and normality; e) Challenges: Include appropriate writing style, nurses reading parental entries, and limited resources. Based on these findings and relevant literature, a framework for NICU diary conceptualization was developed. Interestingly, grown-up babies are interested in the diary, too. One parent mentioned: “Our daughter, who has now turned three, is very interested in the photos and to hear [...] Why did she look like that?” NICU diaries have significant potential to support parental coping. However, a theoretical framework is needed to clarify their usage for nurses and parents.
Willmeroth T. Nurses' and Parents' View on Neonatal Intensive Care Unit Diaries: A Qualitative Study and Framework Conceptualization. Am J Perinatol. 2024 May;41(S 01):e1800-e1812
Project for developing a position statement: use of diaries in the neonatal and paediatric intensive care settings
The European Society of Paediatric and Neonatal Intensive Care (ESPNIC) are collaboratively producing a census position statement on the use of diaries in the neonatal and paediatric intensive care settings. There is scant evidence supporting the impact of diaries in these areas, and although some evidence can be extrapolated from the adult ICU population, the experience of the baby, child and their family is different.
Led by Dr Orsola Gawronski, Dr Fiona Lynch, Professor Anne-Sylvie Ramelet, and Dr Vincenza Sansone, the aim of this group is to produce guidance on the best approach, considerations, and advice on how to implement diaries in the NICU or PICU.
This work has adopted a systematic approach, with engagement with nurses, doctors, psychologists, and families from across Europe. If you are interested in being involved and are a member of ESPNIC please contact Fiona Lynch at Fiona.lynch@gosh.nhs.uk for further information.
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.
Mortality: In 195,702 ICU survivors, 3-year mortality, relevant outcome parameter were readmission rates, & expenses were the worst within 6 months of discharge. Kang et al (2024) from South Korea Link
Outcome in Neurocritical Care: a review identified 74 studies reporting cognitive, mental health, health-related quality of life (HRQoL), and employment outcomes in neurocritical care patients. Labuzetta et al (2024) Link
ARDS & ECMO: in a meta-analysis of 32 studies of patients with ARDS, comparing ECMO vs conventional mechanically ventilation, the quality of life of survivors was similar. Turgeon et al (2024) Link
Sleep: in 260 ICU patients after ARDS due to Covid-19 after 12 months, sleep quality was poor in 40% of survivors, assessed with the Pittsburgh Sleep Quality Index, and a disturbed fragmentation of the circadian rest-activity rhythm. Henríquez-Beltrán et al (2024) from Spain Link
QoL: in 590 persons (395 ICU survivors and 195 age- & gender-matched controls), consequences of post-ICU issues may play a more significant role in affecting QoL than the issues themselves. Malmgren et al (2024) from Sweden Link
Peer support: in a feasibility trial with 80 surviving ICU patients, an in-person attendance peer-support group was feasible, especially 4-6 weeks post hospital discharge, compared to 2-3 weeks. Haines et al (2024) from Australia Link
Frailty: in a large group of 531 ICU patients with a stay ≥7 days, 33.6% were frail (CFS ≥5), 37.6% pre-frail (CFS 3-4), and 28.8% non-frail (CFS 1-2). Frail patients had a higher 6-month mortality and reduced physical function, but not reduced mental health function. Wozniak et al (2024) from Switzerland Link
PICS: From bedside to recovery: exercise therapy for prevention of post-intensive care syndrome. Excellent review by Liu et al (2024) Link
PICS-F: Post Intensive care syndrome family: A comprehensive review by Shirasaki et al (2024) 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 & 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