Newsletter March 2026
31/03/26 17:25 Filed in: News-Ticker
Dear Friends of the ICU Diary,
We hope you are all doing well!
The working group on family- and child-friendly intensive care units of the German Society of Intensive Care Medicine (DIVI), Section on Critical Care Rehabilitation is sending you this newsletter on ICU diaries and psychosocial aspects of intensive care medicine and nursing.
As always, we have summarized several studies on ICU diaries and family-centered care for you and also report on some other interesting articles!
Enjoy reading!
Chu-Won, Kristin, Maria, and Peter
ICU DIARIES
Report on the international ICU Diary Conference 2025
ICU diaries are increasingly recognised as an important tool for promoting patient- and family-centred care in intensive care units. The aim of this work was to systematically summarise current developments, innovations, and international practices related to ICU diaries. The ICU diary experts Ewens, Gallie, Jones, Karnatowskaia, and Nydahl (2026) conducted a six-week international online conference in 2025, involving a total of 23 experts and 418 participants. The methodology included structured online sessions with presentations and discussions, as well as a standardised evaluation using questionnaires. The results indicate that ICU diaries are established worldwide as an effective intervention to reduce psychological burden, such as PTSD, and to support memory reconstruction in patients. For family members, particularly qualitative benefits are evident, including improved coping and communication, while quantitative effects remain inconsistent. A key trend is the increasing digitalisation of ICU diaries, which offers new opportunities for accessibility and standardisation, but also introduces challenges such as data protection and implementation barriers. First-hand accounts highlight the emotional significance of diaries for identity reconstruction and psychological processing. Overall, ICU diaries contribute to the humanisation of critical care, although their implementation requires context-specific adaptation and structural support. The conference presentations are available at www.icu-diary.org
Nydahl, P., Ewens, B., Debue, A.-S., Fiorilla, X., Gabriel, K., Galazzi, A., Gallie, L., Groth, N., Hickey, C., Hudson, M., Lynch, F., Maxwell, N., van Mol, M., Renner, C., Rose, L., Tantam, K., Karnatovskaia, L., & Jones, C. Key Insights From the International ICU Diary Conference 2025. Nursing in Critical Care, 31(3), e70430.
Digital Diaries
Digital intensive care unit (ICU) diaries are increasingly used to support communication and psychological recovery for patients and families. This study examined how ICU nurses write in coauthored digital diaries with real-time family access and what influences their writing decisions. Schol et al. (2026) conducted a qualitative study using thematic analysis of 110 nurse-authored diary entries and semistructured interviews with 22 ICU nurses across four Dutch hospitals. The findings showed that diary writing is a complex, reflective, and relational practice. Eight themes from diary entries included portraying the patient as a person, compassionate presence, and simplified medical communication, while interview data revealed motivations, contextual influences, and decision-making processes. Real-time family access strongly shaped writing behaviour, leading nurses to carefully adjust tone, minimise jargon, and omit or soften sensitive information. Nurses described diary writing as meaningful but emotionally demanding, requiring time, reflection, and support. Limitations include the qualitative design, lack of patient perspectives, limited generalisability due to the Dutch coauthored model, and potential sampling bias towards experienced or motivated nurses. The study concludes that digital diary writing extends beyond documentation to a nuanced communicative practice requiring ethical guidance and emotional support.
Schol CMA, Holman S, van Son-Kemmeren W, van Esch A, Berger E, Mol V, Gommers DAMPJ, van Mol MMC. Writing and reasoning among intensive care nurses in coauthored digital diaries with real-time family access: A qualitative study. Aust Crit Care. 2026 Feb;39(1):101470. doi: 10.1016/j.aucc.2025.101470
Implementation of digital diaries
Digital ICU diaries are increasingly implemented to support patient and family recovery and improve communication in critical care. This study examined the implementation, uptake, and sustainability of an electronic ICU diary in routine clinical practice. Rose et al. (2026) conducted a multi-method service evaluation study across four ICUs in two UK hospitals, including audits, staff questionnaires, and analysis of diary use over time. The findings showed that e-diary implementation increased uptake compared with paper diaries (from 20% to 65% during implementation), generating 1,242 entries, mainly by nurses (65%), followed by family members (23%) and therapists (12%). Staff perceived the e-diary as accessible and usable (74% easy to access; 63% easy to use), with high acceptability and feasibility scores. Key facilitators included accessibility, legibility, and family engagement, while barriers involved login requirements, need for training, and challenges for less digitally literate users. Sustained use remained moderate over time (≈45.6%). The study concludes that e-diaries are a feasible and acceptable alternative to paper diaries, though ongoing support is required for sustainable implementation.
Rose L, Welch A, Okelana K, Hassan F, Apps C, Brooks K, Law E, Slack A, Susser K, Meyer J. Implementation and sustainability of an innovative ICU e-diary. Intensive Crit Care Nurs. 2026 Apr;93:104266. doi: 10.1016/j.iccn.2025.104266.
Editorial about Rose: from scratch to AI, by Peschel et al (2026) Link
Pediatric diaries stimulate sense making
Patient diaries are increasingly used in intensive care to support psychological recovery and communication among patients, families, and healthcare professionals. This study examined how patient diaries are used in paediatric intensive care units (PICUs) by children, families, and healthcare professionals. Lynch et al. (2026) conducted a qualitative study using Constructivist Grounded Theory, including interviews with 11 families during PICU admission and follow-up, as well as focus groups with 95 nurses and healthcare assistants in a UK PICU. The findings identified interconnected categories culminating in the core concept of “Making Sense”. Diaries functioned as tools for creating connections between parents, children, staff, and wider family members, strengthening relationships and communication. They had a strong emotional impact, serving as outlets for expression, memory preservation, and coping, while also affecting staff emotionally. Diaries further empowered parental involvement by enhancing autonomy, supporting decision-making, and providing a sense of control in a highly medicalised environment. Importantly, diaries offered a structured narrative that helped families understand and reconstruct the child’s critical illness journey, bridging memory gaps and facilitating meaning-making. Limitations include the single-centre design, limited inclusion of children and other professional groups, and potential constraints of focus group dynamics. The study concludes that PICU diaries are a multidimensional intervention that enhances communication, emotional processing, and understanding. These findings are highly relevant for intensive care practice, highlighting diaries as a key strategy to support families and potentially mitigate psychological sequelae associated with post-intensive care syndrome.
Lynch F, Latour JM, Endacott R. A Constructivist Grounded Theory Study on the Use of Patient Diaries in pAediatric inTensive carE from parents' and nurses' perspectives: The UPDATE Study. Nurs Crit Care. 2026 Mar;31(2):e70419. doi: 10.1111/nicc.70419
Pediatric Diaries for sleep
Intensive care unit (ICU) diaries have been proposed as an intervention to improve psychological outcomes and recovery in critically ill patients and their families. This study examined whether a paediatric ICU (PICU) diary intervention improves sleep quality and reduces stress-related disorders in children, while also alleviating anxiety and depression in their parents. He et al. (2026) conducted a single-blind randomised controlled trial including 94 child–parent dyads, comparing standard care with an additional diary intervention. The intervention involved collaborative diary entries by staff, parents, and children during the PICU stay. The findings showed that children in the intervention group had significantly shorter awakening times and improved sleep quality during admission, as well as lower stress disorder scores at one and three months post-discharge. Parents reported significantly reduced anxiety, depression, and acute stress at discharge and short-term follow-up, although anxiety differences were not sustained at three months. Limitations include reliance on subjective measures, limited follow-up duration, single-centre design, and restricted generalisability due to specific visitation policies and inclusion of only conscious children. Overall, the study concludes that PICU diaries are a feasible intervention to improve psychological outcomes.
He Y, Zhang Y, Xin H, Lin J, Lin S, Li S, Cheng X, Liu G, Liao J. Effect of diary intervention on sleep quality and risk of stress disorders among critically ill children in pediatric intensive care units and on their parents' anxiety level: A randomized controlled trial. Intensive Crit Care Nurs. 2026 Apr;93:104315. doi: 10.1016/j.iccn.2025.104315.
Pediatric Experiences
Bonding and early relational experiences are fundamental to infant development, particularly in neonatal intensive care settings. This study explored how infants experience bonding and connection with their parents in the NICU environment. Duffy et al. (2026) conducted a qualitative, 360° phenomenological study using observations, bedside diaries, newborn behavioural assessments, and interviews with infants, parents, and healthcare professionals in an Australian NICU. The findings identified three themes: layered separation (physical, emotional, and relational barriers to closeness), missed opportunities for connection due to environmental and communicative challenges, and resilience-in-relationship, highlighting infants’ and parents’ adaptive capacities. Despite significant barriers, infants actively sought connection and parents demonstrated ongoing engagement.
Duffy N, Hickey L, Treyvaud K, Delany C. The infant's lived experience of bonding and connection with their parents in a neonatal intensive care. Infant Ment Health J. 2026 Jan;47(1):e70069. doi: 10.1002/imhj.70069.
Pilotstudy
This study from Italy examined the feasibility of intensive care diaries in the PICU and differences in the behavior of parents and children after discharge compared to a control group. Sixty of 119 children and their families received a diary; the other group did not. The feasibility of the diaries was evaluated as good based on established criteria (such as suitability, recruitment, and protocol adherence). One and three months after discharge from the PICU, post-traumatic stress disorder (PTSD), anxiety, and depression in parents and children, as well as the children’s behavior, were measured using validated scales. At the one-month follow-up, parents in the control group reported higher rates of PTSD (21% vs. 11%, p = 0.1) and depression (28% vs. 25%, p = 0.7) and lower levels of anxiety (54% vs. 60%, p = 0.5) compared to the intervention group. After 3 months, lower scores were observed across all endpoints. Satisfaction with the diary was rated as high. The small sample size and the lack of blinding were cited as limitations.
Genna, C, Thekkan, KR, Cancani, F, Di Nardo, M, Rossi, A, Franci, M, ... & PICU Diaries Study Group. (2026). The impact of the PICU diary on post-intensive care syndrome in children and their parents: A pilot randomized controlled trial. Intensive and Critical Care Nursing, 92, 104190.
Non-narrative diaries in the neonatal ICU
Admission to neonatal intensive care units (NICUs) disrupts early parent–infant bonding and may contribute to family distress and post-intensive care syndrome in families. This study examines how non-narrative diaries can be used as structured tools to document parental involvement and clinical variables in NICU settings. Sorrentino et al. (2026) conducted a scoping review following Joanna Briggs Institute methodology, including 18 studies identified through multiple databases and grey literature up to March 2025. Most included studies were observational, and diaries were primarily completed by parents, particularly mothers. The review mapped diary formats, recorded variables, and applications. Non-narrative diaries are structured data collection tools that capture predefined variables rather than free-text reflections. They typically use formats such as checklists, timelines, or tables to record activities and events in real time. Examples include the “parent–infant closeness diary”, where parents document presence in minutes per day, skin-to-skin contact, or holding, and breastfeeding logs recording pumping frequency and volume. Other formats include paper-based time charts divided into fixed intervals or electronic diaries with predefined questions on parental involvement and infant care activities. The results show that non-narrative diaries are versatile tools for collecting quantitative and semi-structured data, particularly on parental presence (72.2%), skin-to-skin contact (66.6%), and holding (33.3%). They were also used to assess behavioural outcomes, parental engagement, well-being, organisational factors, and breastfeeding. Some studies demonstrated associations between increased parental involvement and improved infant development or reduced parental distress. However, diary formats varied widely, and only a minority of tools were validated, limiting comparability. Overall, the review concludes that non-narrative diaries are feasible, low-cost instruments that support family-centred care and data collection. This study is significant for intensive care as it highlights a practical approach to enhancing parental involvement and potentially mitigating PICS-F.
Sorrentino G, Genna C, Thekkan KR, Aite L, Dall'Oglio I, Bevilacqua F, Ragni A, Tiozzo E, Gawronski O. Non-Narrative Diaries as Data Collection Tool in Neonatal Intensive Care Unit: A Scoping Review. Nurs Crit Care. 2026 Mar;31(2):e70396. doi: 10.1111/nicc.70396
Protocol
Background: Intensive care unit (ICU) admission is associated with significant psychological, cognitive, and physical sequelae for patients and their families, commonly described as post-intensive care syndrome (PICS) and PICS-F. ICU diaries are proposed as a low-cost, humanising intervention to improve communication, emotional processing, and recovery; however, existing evidence remains inconclusive due to small samples and limited study designs. Aim: Muñoz-Rey et al. (2026) aim to evaluate the efficacy of ICU diaries in improving quality of life and reducing post-traumatic stress, anxiety, and depression in patients and families, while also exploring experiences and professional satisfaction. Methods: th authors designed a multicentre mixed-method study comprising two phases. Phase 1 is a randomised, parallel, non-blinded clinical trial including 240 patients and relatives (120 per group), comparing standard care with and without ICU diaries. Outcomes (HRQoL, PTSD, anxiety/depression) are assessed at 2, 6, and 12 months using validated instruments (SF-36, IES-R, HADS). Phase 2 is a hermeneutic phenomenological study involving 36–72 participants, using in-depth interviews to explore lived experiences. Professional satisfaction is assessed via survey. Expected Results: The study is expected to provide robust evidence on the clinical efficacy and experiential impact of ICU diaries, informing implementation strategies. Findings may support improved psychological recovery and contribute to interventions aimed at reducing PICS and enhancing family-centred intensive care.
Muñoz-Rey P, Romero-García M, Anglès-Sabatè I, Ausió-Dot A, Alonso-Fernández S, Alcalá-Jimènez I, Huertas-Zurriaga A, Tur-Rubio C, Delgado-Hito P. Efficacy of the intensive care unit diary: a mixed-method study protocol. BMC Nurs. 2026 Jan 19;25(1):153. doi: 10.1186/s12912-026-04300-z.
RELATED STUDIES
Some titles were taken from the newsletters of @ICURehab Newsletter by Dale M. Needham and Critical Care Reviews by Rob Mac Sweeney, and of course our own searches.
Dignity: In 69 participants (33 family members and 36 ICU staff), use of the Patient Dignity Question (“What do I need to know about you/your family member as a person to take the best care of you/them as possible?”) in ICUs to elicit personhood was rated as highly meaningful (families mean 4.8/5), provided important information for care (4.8), enhanced staff empathy (3.7) and connectedness (3.9), but had limited perceived impact on physical care (2.8), indicating strong relational but modest clinical effects. Olafson et al (2026) from Canada Link
Regaining health: In 20 participants (10 ICU survivors and 10 family members), experiences of health and family roles three months after ICU discharge revealed four themes - personal autonomy, narrative reconstruction, relationship dynamics, and empathetic concern - highlighting differing recovery priorities, disrupted emotional processing, and complex relational changes affecting both groups. Qualitative study by Onrust et al. (2026) from the Netherlands Link
Virtual ward rounds: In 72 relatives of ICU patients, virtual participation in ICU ward rounds proved feasible (85.7% uptake, 85.7% rounds without technical issues) and was associated with a significant improvement in family engagement (FAME 64.5 ± 20.5 to 69.8 ± 15.2; p = 0.045) and high satisfaction (75.8 ± 17.2). Pilot study by Beydoun et al. (2025) Canada Link
Guestbooks: In a qualitative analysis of free-text entries by relatives in guestbooks from three Italian ICUs, guestbooks were primarily used to establish intersubjectivity with the care team, process biographical disruptions caused by ICU admission, and reflect on the family experience, thereby functioning as an effective family-centred communication and relational tool. Qualitative study by Caronia et al. (2025) Italy Link
Get-to-know-me-board: The ICU environment often prioritizes disease over personhood, and while the Get-To-Know-Me Board (GTKMB) can support humanized, person-centered care, its use remains inconsistent due to workflow and ownership challenges. A stakeholder-driven quality improvement initiative showed modest improvements—especially with reminders and checklists—highlighting that sustainable implementation requires multidisciplinary engagement and integration into routine care, while meaningful patient outcome effects still need further evaluation. Moon et al (2026) Link
Responsibilities: In a mixed-methods study involving general practitioners, intensivists, and patients in the UK, responsibility for post-discharge follow-up of critical illness survivors was found to be unclear, driven by inconsistent guidelines, limited awareness of ICU survivorship, unclear illness boundaries, and high workload and resource constraints, with potential negative effects on quality of care. Mixed-methods study by Stewart et al. (2025) UK Link
PICS: Outpatient care for patients with post-intensive care syndrome (PICS) in German-speaking countries shows substantial gaps, as missing ICD-10 coding, limited reimbursement options, few specialised academic outpatient clinics, and insufficient post-rehabilitation follow-up structures hinder diagnosis, treatment, and care organisation. Position paper by DIVI Section PICS (2025) Link
PICSII: the umbrella review on interventions to avoid PICS with 9 systematic reviews, 112 RCTs and 19,996 survivors showed benefits for early mobilization, follow-up examinations, intensive care diaries, rehabilitation exercises and care-led interventions (with low to very low certainty). Cai et al (2026) Link
PICS III: In 202 studies on non-pharmacological interventions after critical illness, most evidence focused on ICU outreach/follow-up care, physical rehabilitation, and nutrition, highlighting these approaches as central strategies to improve post-ICU patient outcomes. Review by Gustafson et al. (2025) Link
What matters most: In 40 ARDS survivors and their family members assessed at discharge, and at 3 and 6 months, survival, cognitive recovery, and physical function were prioritised as the most important outcomes of intensive care. Cohort study by Bose et al. (2025) USA Link
Going outside: In 41 adult ICU patients with prolonged stays (≥10 days), therapeutic walks outside the ICU were found to be safe (no serious adverse events; 7% ventilated, median duration 25 minutes, 78% with family present) and associated with significant short-term improvements in mood and perceived health status, as well as reductions in anxiety and depression scores, with greater benefit in patients with poorer baseline mood (OR 1.94). Clinical feasibility study by Gilgado et al. (2025) Argentina Link
Memories: To avoid stressful memories of the intensive care period, the following are recommended: more sensitive diagnostics under sedation, where possible light and specifically titrated sedation with early communication and mobilization, routine use of intensive care diaries, and structured psychological aftercare for patients and relatives. Comment by Paton et al. (2026) Link
Live-Music: In a mixed-methods pilot study with 27 adult intensive care patients, patient-specific live music led to significant reductions in heart rate (−4.33 bpm; p < 0.02), respiratory rate (−2.93; p < 0.001) and mean arterial pressure (−3.30; p < 0.05), increased heart rate variability (p < 0.01) and 24% less pain in 7 patients and was qualitatively described as a relaxing time-out, emotionally meaningful encounter and memorable moment. Thorn et al (2025) from Denmark Link
Toolbox: For family conversations in intensive care, structured negotiation techniques are recommended, including careful preparation, tactical empathy, explicit naming and mirroring of emotions, focusing on shared interests rather than positions, use of open “what/how” questions, offering genuine choices, and clear summaries with next steps to reduce conflict and support patient-centred decision-making. Commentary by Tuinmann et al. (2026) Link
PEDIATRIC STUDIES
Brochures for parents: In a randomised controlled trial involving 126 parents/caregivers of 131 PICU patients, an age-adapted intervention consisting of an informational brochure and telephone follow-up showed no overall significant difference in PTSD symptoms at 6 months (IES-R 37 vs 17; p = 0.132), but a significant reduction among parents of children aged ≥4 years (IES-R 13 vs 42; p = 0.008). Randomised controlled trial by Bridges et al. (2026) United Kingdom Link
Family-centred care in paediatrics: In a scoping review of 38 studies on family-centred interventions in paediatric ICUs, the most common approaches were family presence during ward rounds (26%), ICU diaries (18%), and nursing goal involvement (10%), with 102 different outcome measures and widely varying methodological quality (19–100%), while only four studies involved parents in intervention development. Scoping review by Charles et al. (2026) Link
Vulnerable parents: In an observational study of 77 parents of 52 PICU patients, nearly two-thirds met criteria for acute stress disorder, 42% showed a risk of PTSD, and 68% a risk of depression; the need for psychological follow-up (34%) was strongly associated with PTSD risk (OR 8.42; 95% CI 2.79–25.38), and a moderate dyadic correlation of ASD symptoms between mothers and fathers was observed. Observational study by Rössler et al. (2025) Germany Link
Siblings: In 24 qualitative and mixed-methods studies on the critical illness of a child, siblings demonstrated complex positive and negative experiences across eight thematic domains, including ICU visits, separation, role changes, and support needs, which were strongly influenced by parents, healthcare professionals, and hospital structures and environment. Systematic qualitative review by Appleyeard et al. (2025) Link
Siblings II: In six qualitative interviews with parents of five children following PICU admission, parental experiences of sibling involvement emerged across three phases (preparation, PICU visit, follow-up), shaped by considerations of information provision, weighing risks and benefits, the importance of supportive staff and activities, and an ongoing need for information and resources; quote: “We wanted to take him on this journey!”. Qualitative study by Butler et al. (2025) Australia Link
Siblings III: Editorial on sibling visits featuring a clear overview framework SIBS (Support, Information, Balance, Sensitivity). Editorial by Butler et al. (2025) Link
Family board: In an implementation study in a paediatric ICU, a co-designed bedside family board demonstrated high acceptability, appropriateness, and feasibility, and significantly supported the integration of family perspectives, shared goal setting, and family-centred care six months after implementation, although specific elements were used differently depending on developmental age. Implementation study by Van Klaveren et al. (2026) Netherlands Link
Humanising pediatric critical care: This article highlights strategies and current innovations that contribute to the humanisation of pediatric intensive care units. These include (1) family-centered care (innovation: digital platforms for remote updates, video conferencing during rounds, and mobile apps for care coordination), (2) communication tailored to the child’s voice (innovation: use of virtual reality and interactive digital platforms), (3) holistic pain and comfort management (innovation: “comfort bundles” combine pharmacological and non-pharmacological elements such as sedation, sleep hygiene, the presence of family members, and pain relief), (4) PICU environment as a therapeutic agent (Innovation: redesign of the floor plan, private rooms, family areas, and healing gardens), (5) staff well-being directly affects care humanisation (Innovation: use of AI-supported scheduling, predictive workload analysis to proactively manage staffing shortages), and (6) Inclusion and equity are integral to humanised care (Innovation: “justice-oriented critical care”—e.g., through data-driven equity monitoring in the form of outcome dashboards to identify and address care gaps between different demographic groups).
Berdida, DJE, & Latour, JM. (2026). Humanising paediatric care in the PICU: current strategies and emerging insights. Intensive and Critical Care Nursing, 93, 104287. Link
Early Mobilization: Early mobilization shows promising results in reducing PICS among adults; however, the evidence is limited in pediatrics. This pilot study examines the effects of an early mobilization program on parents’ stress and mental health following admission to a pediatric intensive care unit (PICU). Data were compared from parents admitted before (n=45) and after (n=45) the introduction of an early mobilization program. Parents’ mental health was assessed using validated questionnaires on post-traumatic stress disorder (PTSD), distress scales, anxiety, and depression, which were completed within 3–6 months of admission. There was no significant difference between the pre- and post-intervention groups; however, there was a trend toward lower scores on the parental distress scale (2.2 (IQR 0–8) vs. 4.0 (IQR 0–9), p = 0.08) and lower depression scores among fathers (8.5 (IQR 8–15) vs. 9.5 (8–32), p = 0.07) in the post-intervention group.
Van Den Munckhof, S, Meijer, E, Litjens, S, Ista, E, Maas-van Schaaijk, NM, & Van Zwol, A. (2026). Early mobilization in pediatric critical care and parental psychological outcomes 3–6 months after discharge—a pilot study. European Journal of Pediatrics, 185(1), 62. Link
Did We Miss a Study?
We cannot review and summarize every study. If we have overlooked an important one, please send us a short summary and a reference via email, and we will gladly include it in the newsletter!
Stay healthy!
Chu-Won, Kristin, Manuel, Maria & Peter
Dr. Chu-Won Sim, M.Sc. – Psychologist, Department of Pediatric Cardiology, German Heart Center of Charité (DHZC), Berlin, Germany
Kristin Gabriel – Media Scientist, Art Historian, and Yoga Instructor, Berlin
Maria Brauchle, GKP – Nursing School Vorarlberg, Feldkirch, Austria
PD Dr. Peter Nydahl, RN BScN MScN – Nursing Research, University Hospital Schleswig-Holstein, Kiel, Germany
We hope you are all doing well!
The working group on family- and child-friendly intensive care units of the German Society of Intensive Care Medicine (DIVI), Section on Critical Care Rehabilitation is sending you this newsletter on ICU diaries and psychosocial aspects of intensive care medicine and nursing.
As always, we have summarized several studies on ICU diaries and family-centered care for you and also report on some other interesting articles!
Enjoy reading!
Chu-Won, Kristin, Maria, and Peter
ICU DIARIES
Report on the international ICU Diary Conference 2025
ICU diaries are increasingly recognised as an important tool for promoting patient- and family-centred care in intensive care units. The aim of this work was to systematically summarise current developments, innovations, and international practices related to ICU diaries. The ICU diary experts Ewens, Gallie, Jones, Karnatowskaia, and Nydahl (2026) conducted a six-week international online conference in 2025, involving a total of 23 experts and 418 participants. The methodology included structured online sessions with presentations and discussions, as well as a standardised evaluation using questionnaires. The results indicate that ICU diaries are established worldwide as an effective intervention to reduce psychological burden, such as PTSD, and to support memory reconstruction in patients. For family members, particularly qualitative benefits are evident, including improved coping and communication, while quantitative effects remain inconsistent. A key trend is the increasing digitalisation of ICU diaries, which offers new opportunities for accessibility and standardisation, but also introduces challenges such as data protection and implementation barriers. First-hand accounts highlight the emotional significance of diaries for identity reconstruction and psychological processing. Overall, ICU diaries contribute to the humanisation of critical care, although their implementation requires context-specific adaptation and structural support. The conference presentations are available at www.icu-diary.org
Nydahl, P., Ewens, B., Debue, A.-S., Fiorilla, X., Gabriel, K., Galazzi, A., Gallie, L., Groth, N., Hickey, C., Hudson, M., Lynch, F., Maxwell, N., van Mol, M., Renner, C., Rose, L., Tantam, K., Karnatovskaia, L., & Jones, C. Key Insights From the International ICU Diary Conference 2025. Nursing in Critical Care, 31(3), e70430.
Digital Diaries
Digital intensive care unit (ICU) diaries are increasingly used to support communication and psychological recovery for patients and families. This study examined how ICU nurses write in coauthored digital diaries with real-time family access and what influences their writing decisions. Schol et al. (2026) conducted a qualitative study using thematic analysis of 110 nurse-authored diary entries and semistructured interviews with 22 ICU nurses across four Dutch hospitals. The findings showed that diary writing is a complex, reflective, and relational practice. Eight themes from diary entries included portraying the patient as a person, compassionate presence, and simplified medical communication, while interview data revealed motivations, contextual influences, and decision-making processes. Real-time family access strongly shaped writing behaviour, leading nurses to carefully adjust tone, minimise jargon, and omit or soften sensitive information. Nurses described diary writing as meaningful but emotionally demanding, requiring time, reflection, and support. Limitations include the qualitative design, lack of patient perspectives, limited generalisability due to the Dutch coauthored model, and potential sampling bias towards experienced or motivated nurses. The study concludes that digital diary writing extends beyond documentation to a nuanced communicative practice requiring ethical guidance and emotional support.
Schol CMA, Holman S, van Son-Kemmeren W, van Esch A, Berger E, Mol V, Gommers DAMPJ, van Mol MMC. Writing and reasoning among intensive care nurses in coauthored digital diaries with real-time family access: A qualitative study. Aust Crit Care. 2026 Feb;39(1):101470. doi: 10.1016/j.aucc.2025.101470
Implementation of digital diaries
Digital ICU diaries are increasingly implemented to support patient and family recovery and improve communication in critical care. This study examined the implementation, uptake, and sustainability of an electronic ICU diary in routine clinical practice. Rose et al. (2026) conducted a multi-method service evaluation study across four ICUs in two UK hospitals, including audits, staff questionnaires, and analysis of diary use over time. The findings showed that e-diary implementation increased uptake compared with paper diaries (from 20% to 65% during implementation), generating 1,242 entries, mainly by nurses (65%), followed by family members (23%) and therapists (12%). Staff perceived the e-diary as accessible and usable (74% easy to access; 63% easy to use), with high acceptability and feasibility scores. Key facilitators included accessibility, legibility, and family engagement, while barriers involved login requirements, need for training, and challenges for less digitally literate users. Sustained use remained moderate over time (≈45.6%). The study concludes that e-diaries are a feasible and acceptable alternative to paper diaries, though ongoing support is required for sustainable implementation.
Rose L, Welch A, Okelana K, Hassan F, Apps C, Brooks K, Law E, Slack A, Susser K, Meyer J. Implementation and sustainability of an innovative ICU e-diary. Intensive Crit Care Nurs. 2026 Apr;93:104266. doi: 10.1016/j.iccn.2025.104266.
Editorial about Rose: from scratch to AI, by Peschel et al (2026) Link
Pediatric diaries stimulate sense making
Patient diaries are increasingly used in intensive care to support psychological recovery and communication among patients, families, and healthcare professionals. This study examined how patient diaries are used in paediatric intensive care units (PICUs) by children, families, and healthcare professionals. Lynch et al. (2026) conducted a qualitative study using Constructivist Grounded Theory, including interviews with 11 families during PICU admission and follow-up, as well as focus groups with 95 nurses and healthcare assistants in a UK PICU. The findings identified interconnected categories culminating in the core concept of “Making Sense”. Diaries functioned as tools for creating connections between parents, children, staff, and wider family members, strengthening relationships and communication. They had a strong emotional impact, serving as outlets for expression, memory preservation, and coping, while also affecting staff emotionally. Diaries further empowered parental involvement by enhancing autonomy, supporting decision-making, and providing a sense of control in a highly medicalised environment. Importantly, diaries offered a structured narrative that helped families understand and reconstruct the child’s critical illness journey, bridging memory gaps and facilitating meaning-making. Limitations include the single-centre design, limited inclusion of children and other professional groups, and potential constraints of focus group dynamics. The study concludes that PICU diaries are a multidimensional intervention that enhances communication, emotional processing, and understanding. These findings are highly relevant for intensive care practice, highlighting diaries as a key strategy to support families and potentially mitigate psychological sequelae associated with post-intensive care syndrome.
Lynch F, Latour JM, Endacott R. A Constructivist Grounded Theory Study on the Use of Patient Diaries in pAediatric inTensive carE from parents' and nurses' perspectives: The UPDATE Study. Nurs Crit Care. 2026 Mar;31(2):e70419. doi: 10.1111/nicc.70419
Pediatric Diaries for sleep
Intensive care unit (ICU) diaries have been proposed as an intervention to improve psychological outcomes and recovery in critically ill patients and their families. This study examined whether a paediatric ICU (PICU) diary intervention improves sleep quality and reduces stress-related disorders in children, while also alleviating anxiety and depression in their parents. He et al. (2026) conducted a single-blind randomised controlled trial including 94 child–parent dyads, comparing standard care with an additional diary intervention. The intervention involved collaborative diary entries by staff, parents, and children during the PICU stay. The findings showed that children in the intervention group had significantly shorter awakening times and improved sleep quality during admission, as well as lower stress disorder scores at one and three months post-discharge. Parents reported significantly reduced anxiety, depression, and acute stress at discharge and short-term follow-up, although anxiety differences were not sustained at three months. Limitations include reliance on subjective measures, limited follow-up duration, single-centre design, and restricted generalisability due to specific visitation policies and inclusion of only conscious children. Overall, the study concludes that PICU diaries are a feasible intervention to improve psychological outcomes.
He Y, Zhang Y, Xin H, Lin J, Lin S, Li S, Cheng X, Liu G, Liao J. Effect of diary intervention on sleep quality and risk of stress disorders among critically ill children in pediatric intensive care units and on their parents' anxiety level: A randomized controlled trial. Intensive Crit Care Nurs. 2026 Apr;93:104315. doi: 10.1016/j.iccn.2025.104315.
Pediatric Experiences
Bonding and early relational experiences are fundamental to infant development, particularly in neonatal intensive care settings. This study explored how infants experience bonding and connection with their parents in the NICU environment. Duffy et al. (2026) conducted a qualitative, 360° phenomenological study using observations, bedside diaries, newborn behavioural assessments, and interviews with infants, parents, and healthcare professionals in an Australian NICU. The findings identified three themes: layered separation (physical, emotional, and relational barriers to closeness), missed opportunities for connection due to environmental and communicative challenges, and resilience-in-relationship, highlighting infants’ and parents’ adaptive capacities. Despite significant barriers, infants actively sought connection and parents demonstrated ongoing engagement.
Duffy N, Hickey L, Treyvaud K, Delany C. The infant's lived experience of bonding and connection with their parents in a neonatal intensive care. Infant Ment Health J. 2026 Jan;47(1):e70069. doi: 10.1002/imhj.70069.
Pilotstudy
This study from Italy examined the feasibility of intensive care diaries in the PICU and differences in the behavior of parents and children after discharge compared to a control group. Sixty of 119 children and their families received a diary; the other group did not. The feasibility of the diaries was evaluated as good based on established criteria (such as suitability, recruitment, and protocol adherence). One and three months after discharge from the PICU, post-traumatic stress disorder (PTSD), anxiety, and depression in parents and children, as well as the children’s behavior, were measured using validated scales. At the one-month follow-up, parents in the control group reported higher rates of PTSD (21% vs. 11%, p = 0.1) and depression (28% vs. 25%, p = 0.7) and lower levels of anxiety (54% vs. 60%, p = 0.5) compared to the intervention group. After 3 months, lower scores were observed across all endpoints. Satisfaction with the diary was rated as high. The small sample size and the lack of blinding were cited as limitations.
Genna, C, Thekkan, KR, Cancani, F, Di Nardo, M, Rossi, A, Franci, M, ... & PICU Diaries Study Group. (2026). The impact of the PICU diary on post-intensive care syndrome in children and their parents: A pilot randomized controlled trial. Intensive and Critical Care Nursing, 92, 104190.
Non-narrative diaries in the neonatal ICU
Admission to neonatal intensive care units (NICUs) disrupts early parent–infant bonding and may contribute to family distress and post-intensive care syndrome in families. This study examines how non-narrative diaries can be used as structured tools to document parental involvement and clinical variables in NICU settings. Sorrentino et al. (2026) conducted a scoping review following Joanna Briggs Institute methodology, including 18 studies identified through multiple databases and grey literature up to March 2025. Most included studies were observational, and diaries were primarily completed by parents, particularly mothers. The review mapped diary formats, recorded variables, and applications. Non-narrative diaries are structured data collection tools that capture predefined variables rather than free-text reflections. They typically use formats such as checklists, timelines, or tables to record activities and events in real time. Examples include the “parent–infant closeness diary”, where parents document presence in minutes per day, skin-to-skin contact, or holding, and breastfeeding logs recording pumping frequency and volume. Other formats include paper-based time charts divided into fixed intervals or electronic diaries with predefined questions on parental involvement and infant care activities. The results show that non-narrative diaries are versatile tools for collecting quantitative and semi-structured data, particularly on parental presence (72.2%), skin-to-skin contact (66.6%), and holding (33.3%). They were also used to assess behavioural outcomes, parental engagement, well-being, organisational factors, and breastfeeding. Some studies demonstrated associations between increased parental involvement and improved infant development or reduced parental distress. However, diary formats varied widely, and only a minority of tools were validated, limiting comparability. Overall, the review concludes that non-narrative diaries are feasible, low-cost instruments that support family-centred care and data collection. This study is significant for intensive care as it highlights a practical approach to enhancing parental involvement and potentially mitigating PICS-F.
Sorrentino G, Genna C, Thekkan KR, Aite L, Dall'Oglio I, Bevilacqua F, Ragni A, Tiozzo E, Gawronski O. Non-Narrative Diaries as Data Collection Tool in Neonatal Intensive Care Unit: A Scoping Review. Nurs Crit Care. 2026 Mar;31(2):e70396. doi: 10.1111/nicc.70396
Protocol
Background: Intensive care unit (ICU) admission is associated with significant psychological, cognitive, and physical sequelae for patients and their families, commonly described as post-intensive care syndrome (PICS) and PICS-F. ICU diaries are proposed as a low-cost, humanising intervention to improve communication, emotional processing, and recovery; however, existing evidence remains inconclusive due to small samples and limited study designs. Aim: Muñoz-Rey et al. (2026) aim to evaluate the efficacy of ICU diaries in improving quality of life and reducing post-traumatic stress, anxiety, and depression in patients and families, while also exploring experiences and professional satisfaction. Methods: th authors designed a multicentre mixed-method study comprising two phases. Phase 1 is a randomised, parallel, non-blinded clinical trial including 240 patients and relatives (120 per group), comparing standard care with and without ICU diaries. Outcomes (HRQoL, PTSD, anxiety/depression) are assessed at 2, 6, and 12 months using validated instruments (SF-36, IES-R, HADS). Phase 2 is a hermeneutic phenomenological study involving 36–72 participants, using in-depth interviews to explore lived experiences. Professional satisfaction is assessed via survey. Expected Results: The study is expected to provide robust evidence on the clinical efficacy and experiential impact of ICU diaries, informing implementation strategies. Findings may support improved psychological recovery and contribute to interventions aimed at reducing PICS and enhancing family-centred intensive care.
Muñoz-Rey P, Romero-García M, Anglès-Sabatè I, Ausió-Dot A, Alonso-Fernández S, Alcalá-Jimènez I, Huertas-Zurriaga A, Tur-Rubio C, Delgado-Hito P. Efficacy of the intensive care unit diary: a mixed-method study protocol. BMC Nurs. 2026 Jan 19;25(1):153. doi: 10.1186/s12912-026-04300-z.
RELATED STUDIES
Some titles were taken from the newsletters of @ICURehab Newsletter by Dale M. Needham and Critical Care Reviews by Rob Mac Sweeney, and of course our own searches.
Dignity: In 69 participants (33 family members and 36 ICU staff), use of the Patient Dignity Question (“What do I need to know about you/your family member as a person to take the best care of you/them as possible?”) in ICUs to elicit personhood was rated as highly meaningful (families mean 4.8/5), provided important information for care (4.8), enhanced staff empathy (3.7) and connectedness (3.9), but had limited perceived impact on physical care (2.8), indicating strong relational but modest clinical effects. Olafson et al (2026) from Canada Link
Regaining health: In 20 participants (10 ICU survivors and 10 family members), experiences of health and family roles three months after ICU discharge revealed four themes - personal autonomy, narrative reconstruction, relationship dynamics, and empathetic concern - highlighting differing recovery priorities, disrupted emotional processing, and complex relational changes affecting both groups. Qualitative study by Onrust et al. (2026) from the Netherlands Link
Virtual ward rounds: In 72 relatives of ICU patients, virtual participation in ICU ward rounds proved feasible (85.7% uptake, 85.7% rounds without technical issues) and was associated with a significant improvement in family engagement (FAME 64.5 ± 20.5 to 69.8 ± 15.2; p = 0.045) and high satisfaction (75.8 ± 17.2). Pilot study by Beydoun et al. (2025) Canada Link
Guestbooks: In a qualitative analysis of free-text entries by relatives in guestbooks from three Italian ICUs, guestbooks were primarily used to establish intersubjectivity with the care team, process biographical disruptions caused by ICU admission, and reflect on the family experience, thereby functioning as an effective family-centred communication and relational tool. Qualitative study by Caronia et al. (2025) Italy Link
Get-to-know-me-board: The ICU environment often prioritizes disease over personhood, and while the Get-To-Know-Me Board (GTKMB) can support humanized, person-centered care, its use remains inconsistent due to workflow and ownership challenges. A stakeholder-driven quality improvement initiative showed modest improvements—especially with reminders and checklists—highlighting that sustainable implementation requires multidisciplinary engagement and integration into routine care, while meaningful patient outcome effects still need further evaluation. Moon et al (2026) Link
Responsibilities: In a mixed-methods study involving general practitioners, intensivists, and patients in the UK, responsibility for post-discharge follow-up of critical illness survivors was found to be unclear, driven by inconsistent guidelines, limited awareness of ICU survivorship, unclear illness boundaries, and high workload and resource constraints, with potential negative effects on quality of care. Mixed-methods study by Stewart et al. (2025) UK Link
PICS: Outpatient care for patients with post-intensive care syndrome (PICS) in German-speaking countries shows substantial gaps, as missing ICD-10 coding, limited reimbursement options, few specialised academic outpatient clinics, and insufficient post-rehabilitation follow-up structures hinder diagnosis, treatment, and care organisation. Position paper by DIVI Section PICS (2025) Link
PICSII: the umbrella review on interventions to avoid PICS with 9 systematic reviews, 112 RCTs and 19,996 survivors showed benefits for early mobilization, follow-up examinations, intensive care diaries, rehabilitation exercises and care-led interventions (with low to very low certainty). Cai et al (2026) Link
PICS III: In 202 studies on non-pharmacological interventions after critical illness, most evidence focused on ICU outreach/follow-up care, physical rehabilitation, and nutrition, highlighting these approaches as central strategies to improve post-ICU patient outcomes. Review by Gustafson et al. (2025) Link
What matters most: In 40 ARDS survivors and their family members assessed at discharge, and at 3 and 6 months, survival, cognitive recovery, and physical function were prioritised as the most important outcomes of intensive care. Cohort study by Bose et al. (2025) USA Link
Going outside: In 41 adult ICU patients with prolonged stays (≥10 days), therapeutic walks outside the ICU were found to be safe (no serious adverse events; 7% ventilated, median duration 25 minutes, 78% with family present) and associated with significant short-term improvements in mood and perceived health status, as well as reductions in anxiety and depression scores, with greater benefit in patients with poorer baseline mood (OR 1.94). Clinical feasibility study by Gilgado et al. (2025) Argentina Link
Memories: To avoid stressful memories of the intensive care period, the following are recommended: more sensitive diagnostics under sedation, where possible light and specifically titrated sedation with early communication and mobilization, routine use of intensive care diaries, and structured psychological aftercare for patients and relatives. Comment by Paton et al. (2026) Link
Live-Music: In a mixed-methods pilot study with 27 adult intensive care patients, patient-specific live music led to significant reductions in heart rate (−4.33 bpm; p < 0.02), respiratory rate (−2.93; p < 0.001) and mean arterial pressure (−3.30; p < 0.05), increased heart rate variability (p < 0.01) and 24% less pain in 7 patients and was qualitatively described as a relaxing time-out, emotionally meaningful encounter and memorable moment. Thorn et al (2025) from Denmark Link
Toolbox: For family conversations in intensive care, structured negotiation techniques are recommended, including careful preparation, tactical empathy, explicit naming and mirroring of emotions, focusing on shared interests rather than positions, use of open “what/how” questions, offering genuine choices, and clear summaries with next steps to reduce conflict and support patient-centred decision-making. Commentary by Tuinmann et al. (2026) Link
PEDIATRIC STUDIES
Brochures for parents: In a randomised controlled trial involving 126 parents/caregivers of 131 PICU patients, an age-adapted intervention consisting of an informational brochure and telephone follow-up showed no overall significant difference in PTSD symptoms at 6 months (IES-R 37 vs 17; p = 0.132), but a significant reduction among parents of children aged ≥4 years (IES-R 13 vs 42; p = 0.008). Randomised controlled trial by Bridges et al. (2026) United Kingdom Link
Family-centred care in paediatrics: In a scoping review of 38 studies on family-centred interventions in paediatric ICUs, the most common approaches were family presence during ward rounds (26%), ICU diaries (18%), and nursing goal involvement (10%), with 102 different outcome measures and widely varying methodological quality (19–100%), while only four studies involved parents in intervention development. Scoping review by Charles et al. (2026) Link
Vulnerable parents: In an observational study of 77 parents of 52 PICU patients, nearly two-thirds met criteria for acute stress disorder, 42% showed a risk of PTSD, and 68% a risk of depression; the need for psychological follow-up (34%) was strongly associated with PTSD risk (OR 8.42; 95% CI 2.79–25.38), and a moderate dyadic correlation of ASD symptoms between mothers and fathers was observed. Observational study by Rössler et al. (2025) Germany Link
Siblings: In 24 qualitative and mixed-methods studies on the critical illness of a child, siblings demonstrated complex positive and negative experiences across eight thematic domains, including ICU visits, separation, role changes, and support needs, which were strongly influenced by parents, healthcare professionals, and hospital structures and environment. Systematic qualitative review by Appleyeard et al. (2025) Link
Siblings II: In six qualitative interviews with parents of five children following PICU admission, parental experiences of sibling involvement emerged across three phases (preparation, PICU visit, follow-up), shaped by considerations of information provision, weighing risks and benefits, the importance of supportive staff and activities, and an ongoing need for information and resources; quote: “We wanted to take him on this journey!”. Qualitative study by Butler et al. (2025) Australia Link
Siblings III: Editorial on sibling visits featuring a clear overview framework SIBS (Support, Information, Balance, Sensitivity). Editorial by Butler et al. (2025) Link
Family board: In an implementation study in a paediatric ICU, a co-designed bedside family board demonstrated high acceptability, appropriateness, and feasibility, and significantly supported the integration of family perspectives, shared goal setting, and family-centred care six months after implementation, although specific elements were used differently depending on developmental age. Implementation study by Van Klaveren et al. (2026) Netherlands Link
Humanising pediatric critical care: This article highlights strategies and current innovations that contribute to the humanisation of pediatric intensive care units. These include (1) family-centered care (innovation: digital platforms for remote updates, video conferencing during rounds, and mobile apps for care coordination), (2) communication tailored to the child’s voice (innovation: use of virtual reality and interactive digital platforms), (3) holistic pain and comfort management (innovation: “comfort bundles” combine pharmacological and non-pharmacological elements such as sedation, sleep hygiene, the presence of family members, and pain relief), (4) PICU environment as a therapeutic agent (Innovation: redesign of the floor plan, private rooms, family areas, and healing gardens), (5) staff well-being directly affects care humanisation (Innovation: use of AI-supported scheduling, predictive workload analysis to proactively manage staffing shortages), and (6) Inclusion and equity are integral to humanised care (Innovation: “justice-oriented critical care”—e.g., through data-driven equity monitoring in the form of outcome dashboards to identify and address care gaps between different demographic groups).
Berdida, DJE, & Latour, JM. (2026). Humanising paediatric care in the PICU: current strategies and emerging insights. Intensive and Critical Care Nursing, 93, 104287. Link
Early Mobilization: Early mobilization shows promising results in reducing PICS among adults; however, the evidence is limited in pediatrics. This pilot study examines the effects of an early mobilization program on parents’ stress and mental health following admission to a pediatric intensive care unit (PICU). Data were compared from parents admitted before (n=45) and after (n=45) the introduction of an early mobilization program. Parents’ mental health was assessed using validated questionnaires on post-traumatic stress disorder (PTSD), distress scales, anxiety, and depression, which were completed within 3–6 months of admission. There was no significant difference between the pre- and post-intervention groups; however, there was a trend toward lower scores on the parental distress scale (2.2 (IQR 0–8) vs. 4.0 (IQR 0–9), p = 0.08) and lower depression scores among fathers (8.5 (IQR 8–15) vs. 9.5 (8–32), p = 0.07) in the post-intervention group.
Van Den Munckhof, S, Meijer, E, Litjens, S, Ista, E, Maas-van Schaaijk, NM, & Van Zwol, A. (2026). Early mobilization in pediatric critical care and parental psychological outcomes 3–6 months after discharge—a pilot study. European Journal of Pediatrics, 185(1), 62. Link
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Stay healthy!
Chu-Won, Kristin, Manuel, Maria & Peter
Dr. Chu-Won Sim, M.Sc. – Psychologist, Department of Pediatric Cardiology, German Heart Center of Charité (DHZC), Berlin, Germany
Kristin Gabriel – Media Scientist, Art Historian, and Yoga Instructor, Berlin
Maria Brauchle, GKP – Nursing School Vorarlberg, Feldkirch, Austria
PD Dr. Peter Nydahl, RN BScN MScN – Nursing Research, University Hospital Schleswig-Holstein, Kiel, Germany