No full-text available
To read the full-text of this research,
you can request a copy directly from the authors.
Feasibility and Perceptions of PICU Diaries
Abstract
Objectives:
To determine the feasibility of implementing an ICU diary in the pediatric critical care setting and to understand the perceptions held by family members who receive the diaries after PICU discharge.
Design:
Observational pilot study.
Setting:
PICU in a tertiary academic hospital in the United States.
Participants:
Critically ill pediatric patients admitted to the PICU and their families.
Interventions:
The addition of a PICU diary to a patient's routine care.
Measurements and main results:
Twenty families of critically ill children admitted to the PICU were enrolled in the PICU diary pilot study between May 2017 and March 2018. Patients who had an anticipated length of stay of at least 3 days and whose families were English-speaking were included. The median age of patients was 6 years, ranging from newborns to 18 years old, and the median length of stay was 11.5 days (interquartile range, 8.5-41 d). A total of 453 diary entries were written in 19 diaries over 433 PICU days, the majority of which were composed by bedsides nurses (63%). Follow-up surveys sent to parents 2 weeks after PICU discharge revealed that of the parents who had contributed to the diary, most enjoyed doing so (7/8). Nine of 12 parents had reviewed the diary at least once since discharge, and all parent respondents found the diary to be a beneficial aspect of their experience after PICU discharge.
Conclusions:
The use of ICU diaries in the PICU setting is feasible and perceived as beneficial by families of critically ill children. Future studies are needed to better understand if PICU diaries may objectively improve psychologic outcomes of patients and family members after PICU admission.
... Moreover, it is also likely that patients with short hospital stays (MV<48 h) have limited opportunities to write in the PICU diary. 18,19,22 Children whose parents or primary caregiver were not able to speak and write in Italian were excluded. Upon enrollment, a research team member informed the parents about the aims of this study and the characteristics of the PICU diary. ...
... This timeline appeared to be sufficient for the aims of a feasibility study, similarly to other feasibility studies on PICU diaries. 18 The interview was based on four initial close-ended questions where parents were asked to rate on a 1e10 Likert scale their level of satisfaction with the diary, its usefulness for the parent, and usefulness for the child during admission and after PICU discharge. Eight open-ended questions followed to explore their personal opinions about the diary, suggestions for improvement, and their use of the diary after discharge (Supplementary file n 2). ...
... Nine of the children discharged from the PICU had a moderate disability according to the Pediatric Overall Performance Category Scale. 18 The main informal carers were the mothers. The parents' characteristics are summarised in Table 2. ...
Background
The implementation of paediatric intensive care unit (PICU) diaries has been reported as feasible in routine care. To date no feasibility study has compared PICU healthcare providers’ (HCPs) and parents’ opinions on this tool.
Objectives
The aim of this study is to describe the feasibility and perception of PICU diaries in an Italian PICU from the point of view of parents and HCPs.
Methods
This is a single-centre, prospective, observational study conducted in a tertiary care paediatric hospital from August 2020 to May 2021. Children admitted to the emergency department PICU, intubated, and sedated for ≥48 h were enrolled. To explore their perceptions and attitudes with the PICU diary, parents were interviewed at 30 days from their child's discharge from the PICU, whereas PICU HCPs were surveyed at the end of the study. Data were analysed as proportions for categorical variables and means and medians for continuous variables according to the distribution, whereas qualitative data were summarised in categories by two independent researchers.
Results
Twenty families were enrolled in this study. A total of 275 daily PICU diary entries were collected. Children's median age was 9 years (interquartile range = 2–13.25), and the length of stay ranged from 6 to 39 days. PICU diary applicability was rated high by parents and HCPs (>8 on a 1–10 Likert scale). Parents and HCPs perceived PICU diaries as beneficial for communication between staff and families, for parents by expressing their emotions and for staff by becoming aware of how parents experienced their child's admission. Reported barriers were the lack of a private environment, the risk of exposure to public reading, and PICU workload.
Conclusions
PICU diaries were feasible and perceived as beneficial both by parents and HCPs. Future research is warranted to understand the effect of PICU diaries on post-PICU outcomes.
... The studies were predominantly based in Scandinavian countries (five from Denmark, four from Sweden, one from Norway), with four based in the United States of America (USA), one in France and one in India. Two of the studies were based in paediatric ICU ( Herrup et al., 2019 ;Mikkelsen, 2018 ), with the remaining 14 studies based in an adult setting. Two of the studies did not report the number of participants ( Blair et al., 2017 ;Locke et al., 2016 ). ...
... This theme was present in studies where the patient did and did not survive their ICU stay. In those studies where the patient did not survive, the diary was often viewed as a useful tool as part of the grieving process ( Bäckman and Walther, 2001 ;Herrup et al., 2019 ;Melby et al., 2020 ;Mickelson et al., 2021 ): "I think in our situation it was more useful after he had passed away it was part of the healing process too" ( Mickelson et al., 2021 ). ...
... However, as the diary is typically intended to be given to the patient, Johansson et al. (2015) noticed that the feeling expressed in the diary tended to be positive and hopeful, rather than expressing the fears and worries for the patient that they also felt. This focus on positives was also commented on by relatives in both of the two studies based in paediatric intensive care ( Herrup et al., 2019 ;Mikkelsen, 2018 ). This positive bias was not noticed ( Johansson et al., 2018 ), suggesting that the use of a diary to cope with emotions may be restricted by the knowledge that the patient will read the diary. ...
Background
Intensive care patient diaries written by staff and/or relatives are widely used in intensive care units (ICUs) across the world. Although the original aim of the diaries was to support patients in their recovery from ICU, a more recent focus of the literature has been the potential benefit of the diaries to the relatives of patients. Meta-analyses of quantitative studies looking at the impact on the psychological wellbeing of relatives have not consistently found an effect of the diaries, even though qualitative studies suggest that relatives find the diaries to be a useful coping strategy.
Objectives
To evaluate and synthesise qualitative studies looking at the experience of relatives writing in ICU diaries.
Design
A systematic review and qualitative synthesis.
Data sources
A structured search using CINAHL, MEDLINE, PsycInfo, Cochrane Central Register of Controlled Trials (CENTRAL), PTSDHubs and Published International Literature Web of Science Conference Proceedings Citation Index - Science and Social Science and Humanities was conducted.
Review methods
All studies published at any time that included qualitative data (including mixed methods studies) about the perceptions of relatives using ICU patient diaries were included. Themes and narrative statements were extracted from included articles and synthesised. Articles were quality assessed using the Critical Appraisal Skills Programme (CASP) qualitative checklist and Mixed Methods Appraisal Tool (MMAT).
Results
Sixteen studies were included in the review, thirteen qualitative and three mixed methods articles. The themes identified were: 1. Coping (subthemes: 1.1. Emotion-Focused Coping and 1.2. Problem-Focused Coping) 2. Connection (subthemes: 2.1 Method of Communication and 2.2 Developing and maintaining relationships) 3. Developing a Narrative (subthemes 3.1 Understanding 3.2 Shaping the story 3.3 Remembering).
Conclusions
Relatives use the diaries in a variety of ways including as a means of coping, a way of staying connected, as a tool to understand and develop a narrative about the experience. These findings link the use of ICU diaries with literature on written emotional exposure, post-traumatic growth and meaning making. The relationship between a relative's use of the ICU diary, coping strategies and/or post-traumatic growth could be a focus for future quantitative trials.
PROSPERO protocol number CRD42020165869
... The most common diarist is the child or adolescent patient (18 studies, 50%); in 7 studies (19%) parents were the exclusive diarists, in 3 studies (8%) the exclusive diarist was a sibling; in 5 studies the diary was shared with different family members; in 2 studies (5%) it was shared with health professionals (Herrup et al., 2018;Mikkelsen, 2018). In one study the diarists were the children in their role as caregivers (Andersen, 2012). ...
... Children were adept in video diaries as form of communication. group of studies was to help researchers design future studies aimed at understanding the impact of diary use on clinical outcomes (Herrup et al., 2018;Kavas, 2018;Metsäranta et al., 2019;Mikkelsen, 2018;Mupambireyi & Bernays, 2019;Rich et al., 2000;Schwarz et al., 2004). ...
... Other researchers, on the other hand, involved parents because the child's health conditions prevented direct communication. In particular, when children needed intensive care the diary was used by the parents to express their feelings related to their child's risk of dying (Herrup et al., 2018;Mikkelsen, 2018;Schwarz et al., 2004). Furthermore, parents were the diarists in 2 studies (5%) that explored the experience of living at home with a child with complex needs (Nicholl, 2015;Nicholl & Begley, 2012). ...
Problem
Health diaries with both clinical and narrative elements have been widely used in pediatrics to study children's and families' experiences of illness and coping strategies. The objective of this study is to obtain a synthesis of the literature about narrative health diaries using the PRISMA extension for scoping reviews.
Eligibility criteria
Sources were limited to: English language; narrative diaries; children/adolescents and/or parents/caregivers.
Sample
The following databases were searched: PubMed, Embase and CINAHL with no time limits.
Results
Among 36 articles included the most common context where a diary was implemented was the home (61%), the hospital (17%) and the school (14%). The most common diarist is the child or adolescent (50%). Paper diary was the most common type (53%), followed by the video diary (19%), the e-diary (8%) or the audio diary (8%). None of the studies explored the impact of the use of diaries on patient outcomes.
Conclusions
The narrative health diary is used to report patient experiences of illness or common life from the point of view of the child, adolescent or other family members. The diversity of the diaries found shows how the narrative diary may be ‘adapted’ to different settings and pediatric populations.
Implications
The narrative diary is a relevant tool for the exploration of children's and adolescents' experiences of illness and common life. Studies are still needed to describe the impact of narrative diaries keeping on children's health outcomes.
... [15][16][17] Recently, the diary has also been introduced in PICUs with encouraging prospects, proving to be a feasible tool and perceived as beneficial by the families of critically ill children after PICU discharge. 18,19 Indeed, the diary written by parents and health care providers in the PICU appears as a promising support tool for the whole family; it helps children to create memories and is a catalyst for parents to talk about the PICU experience with the child. 19,20 Based on current knowledge, however, no study has analysed and synthesized the thematic contents of the PICU diaries kept by parents and health professionals for children admitted to the PICU. ...
... The most common types of PICU diary entries reported in other studies were related to hospital events. 18,19 The reporting of significant events during the child's PICU admission by caregivers and health care providers was important to fill the gap in the patient's memory of the PICU admission during the child's sedation or caregiver's separation from their child. 20 The value of the ICU diaries in the management of the post-discharge psychological outcomes of family members and patients has been reported in ICU adult settings. ...
Background
The paediatric intensive care unit (PICU) diary is a shared tool, kept at the patient bedside, written by relatives and health care providers. There is little evidence about its feasibility and how it supports the families of children admitted to the PICU. Currently, there is no evidence about how the PICU diary is used and what we can learn from it.
Aim
To explore the contents of narrative PICU diaries in an Italian PICU.
Study design
Qualitative study of PICU diaries conducted with a narrative research approach.
Methods
Children sedated and mechanically ventilated for >48 hours were enrolled in a six-bed Italian PICU of a tertiary care paediatric hospital. During the child's PICU admission, caregivers, relatives, friends, and health care providers were invited to report events, thoughts, and messages, and attach drawings/pictures for the child in the PICU diary. A thematic analysis of the PICU diary contents was performed.
Results
Thirteen PICU diaries were completed between August and December 2020, mainly by parents (n = 95; 45%) and health care providers (n = 52; 25%). Three main themes emerged: “Social and spiritual support,” “Caregiver's emotions, feelings and distress,” and “PICU life.” Diaries offer insight into caregivers' emotions, social support, clinical activities, and interactions with health care providers, and on progression towards recovery.
Conclusion
PICU diaries are valuable in facilitating family-centred care by providing a space for the written account of the child's admission by parents, other visitors, and health care providers.
Relevance to clinical practice
PICU diaries support the relationship and the communication between the family and the team; they provide an informal account of the emotions and needs of parents that has the potential to improve mutual understanding and family-centred care. Social support and spiritual support are key elements reported by parents for coping with their child's PICU admission.
... Other promising interventions that have shown benefits in adults and are planned for study in children include the use of "PICU Diaries" [121]. This intervention involves partnering with families to provide a lay narrative, comprising daily entries, drawings, and/or photographs about their child's condition and care while in the ICU [122]. ...
... In adults, ICU diaries have been shown to improve HRQoL and decrease PTSD, anxiety, and depression following critical illness recovery [123]. New data show the feasibility and acceptance of this intervention among families of critically ill children, and it is ripe for further study [121,122]. ...
Advances in medical and surgical care for children in the pediatric intensive care unit (PICU) have led to vast reductions in mortality, but survivors often leave with newly acquired or worsened morbidity. Emerging evidence reveals that survivors of pediatric critical illness may experience a constellation of physical, emotional, cognitive, and social impairments, collectively known as the “post-intensive care syndrome in pediatrics” (PICs-P). The spectrum of PICs-P manifestations within each domain are heterogeneous. This is attributed to the wide age and developmental diversity of children admitted to PICUs and the high prevalence of chronic complex conditions. PICs-P recovery follows variable trajectories based on numerous patient, family, and environmental factors. Those who improve tend to do so within less than a year of discharge. A small proportion, however, may actually worsen over time. There are many gaps in our current understanding of PICs-P. A unified approach to screening, preventing, and treating PICs-P-related morbidity has been hindered by disparate research methodology. Initiatives are underway to harmonize clinical and research priorities, validate new and existing epidemiologic and patient-specific tools for the prediction or monitoring of outcomes, and define research priorities for investigators interested in long-term outcomes.
... formados e envolvidos no cuidado do filho e quando usam um diário com anotações diárias sobre a condição da criança e os eventos do dia ocorridos durante a hospitalização.(13)(14)(15) Os problemas que envolvem alguns familiares que pos-suem crianças internadas em uma UTIP, como por exemplos: a sensação de ansiedade, medo e tristeza, se tornam proporcionalmente maiores nas famílias que provém de uma outra localidade e precisam de recursos financeiros para custear os gastos. ...
... [4][5][6][7][8][9] Limited data exist in pediatrics or when caregivers write. 4,10 The primary objective of this Stage 2a trial was to quantify feasibility and acceptability of writing interventions among caregivers of children in a PICU. 11 We hypothesize this intervention is feasible to deliver and is acceptable to caregivers. ...
Background: Pediatric intensive care unit (PICU) admissions are caregiver stressors with potential long-term impact. Writing interventions have shown health benefits, although not yet with parents writing during their child's PICU admission. Objective: The study objective was to quantify intervention acceptability and feasibility and to qualitatively examine written texts. Design: This is a proof-of-concept three-arm randomized trial. Setting and Subjects: Subjects were legal caregivers ≥18 years, able to read and write English, and of children ≤18 years in a U.S. PICU for ≥1 day. Measurements: Treatment Acceptability Questionnaire, enrollment rates, completed encounters, and qualitative thematic analysis. Results: Acceptability was high (49% enrollment; mean [standard deviation] Treatment Acceptability Questionnaire scores: M = 24.8 [2.4]). Feasibility was 100% scheduled-to-completed sessions. Thematic analysis revealed two themes (people and relationships); texts were more cognitive than emotional. Conclusions: Caregivers, provided resources and supported by a narrative medicine facilitator, are likely to engage in expressive writing. The intervention warrants subsequent development.
... Additionally, ICU-Diaries provided a helpful tool in not only enabling parents and patients to review and understand lived experiences, but also provided support in explaining difficult information to siblings and other relatives (86). ...
Background and Significance
Advances in pediatric intensive care have led to markedly improved survival rates in critically ill children. Approximately 70% of those children survive with varying forms of complex chronic diseases or impairment/disabilities. Length of stay, length of mechanical ventilation and number of interventions per patient are increasing with rising complexity of underlying diseases, leading to increasing pain, agitation, withdrawal symptoms, delirium, immobility, and sleep disruption. The ICU-Liberation Collaborative of the Society of Critical Care Medicine has developed a number of preventative measures for prevention, early detection, or treatment of physical and psychiatric/psychological sequelae of oftentimes traumatic intensive care medicine. These so called ABCDEF-Bundles consist of elements for (A) assessment, prevention and management of pain, (B) spontaneous awakening and breathing trials (SAT/SBT), (C) choice of analgesia and sedation, (D) assessment, prevention and management of delirium, (E) early mobility and exercise and (F) family engagement and empowerment. For adult patients in critical care medicine, research shows significant effects of bundle-implementation on survival, mechanical ventilation, coma, delirium and post-ICU discharge disposition. Research regarding PICS in children and possible preventative or therapeutic intervention is insufficient as yet. This narrative review provides available information for modification and further research on the ABCDEF-Bundles for use in critically ill children.
Material and Methods
A narrative review of existing literature was used.
Results
One obvious distinction to adult patients is the wide range of different developmental stages of children and the even closer relationship between patient and family. Evidence for pediatric ABCDEF-Bundles is insufficient and input can only be collected from literature regarding different subsections and topics.
Conclusion
In addition to efforts to improve analgesia, sedation and weaning protocols with the aim of prevention, early detection and effective treatment of withdrawal symptoms or delirium, efforts are focused on adjusting ABCDEF bundle for the entire pediatric age group and on strengthening families' decision-making power, understanding parents as a resource for their child and involving them early in the care of their children.
... To further support patients and families, parents and/or guardians are given PICU diaries. PICU diaries have been shown to be beneficial to families and may aid in decreasing anxiety in patients and posttraumatic stress disorder among relatives [64,65]. Conflicting results are present in the adult literature, where it has been reported that while ICU diaries may be beneficial to the patient, it may not directly benefit relatives [66]. ...
Often, pediatric intensive care environments are not conducive to healing the sick. Critically ill children experience disruptions in their circadian rhythms, which can contribute to delayed recovery and poor outcomes. We aim to test the hypothesis that children managed via RESTORE Resilience (R²), a nurse-implemented chronotherapeutic bundle, will experience restorative circadian rhythms compared to children receiving usual care. In this two-phased, prospective cohort study, two separate pediatric intensive care units in the United Sates will enroll a total of 20 baseline subjects followed by 40 intervention subjects, 6 months to less than 18 years of age, requiring invasive mechanical ventilation. During the intervention phase, we will implement the R² bundle, which includes: (1) a focused effort to replicate the child's pre-hospitalization daily routine, (2) cycled day-night lighting and sound modulation, (3) minimal yet effective sedation (RESTORE), (4) nighttime fasting with bolus enteral daytime feedings, (5) early progressive mobility (PICU Up!), (6) continuity in nursing care, and (7) parent diaries. Our primary outcome is circadian activity ratio post-extubation. We hypothesize that children receiving R² will experience restored circadian rhythms as evidenced by decreased nighttime activity while in the PICU. Our exploratory outcomes include salivary melatonin levels; electroencephalogram (EEG) slow-wave activity; R² feasibility, adherence, and system barriers; levels of patient comfort; exposure to sedative medications; time to physiological stability; and parent perception of being well-cared-for. This paper describes the design, rationale, and implementation of R².
Clinicaltrials.gov identifier
NCT04695392.
... 44 The speakers shared their experiences implementing diaries in the pediatric ICU at Johns Hopkins Hospital. 45 Future studies on the long-term impact of pediatric ICU diaries are necessary. ...
Topic:
Many patients in intensive care units have frightening experiences and memories and subsequent post-intensive care syndrome, with psychiatric morbidity including depression, anxiety, and posttraumatic stress disorder. Intensive care unit diaries, written by staff members and families, support patients' understanding of what occurred and may alleviate their psychological suffering.
Clinical relevance:
An increasing number of critical care nurses in the United States and elsewhere are implementing intensive care unit diaries, but implementation remains challenging.
Purpose:
To address emerging questions and support implementation in the United States, we held the Third International Intensive Care Unit Diary Conference as a 1-day preconference during the Seventh Annual Johns Hopkins Critical Care Rehabilitation Conference on November 1, 2018, in Baltimore, Maryland. This article summarizes the conference.
Content covered:
Conference presentations included intensive care unit-related experiences of patients and families, psychosocial aspects of post-intensive care syndrome, the evolution of diaries, implementation strategies for intensive care unit diaries, special topics (eg, legal issues, electronic vs handwritten diaries, pediatric diaries, and time of handover), and psychosocial recovery.
Critical illness resulting in a pediatric intensive care unit (PICU) admission is a profoundly stressful experience for a child and their family. Increasing evidence for emotional and behavioral sequelae post-PICU emphasizes a need to provide better support for families throughout this period of care and recovery. The aim of this qualitative investigation was to identify salient and modifiable aspects of a critical care experience that can be addressed to better support families of critically ill children. Individual semi-structured interviews were conducted with 26 caregivers of children who survived a PICU admission. Interviews were audio-recorded and transcribed verbatim; themes were identified via thematic analysis. Caregivers were enrolled using convenience sampling from seven tertiary care PICUs in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Themes from caregiver interviews were identified within two overarching categories containing three themes each. Advice for future PICU families: (1) Be intentional about caring for your own well-being, (2) speak up, ask questions, and challenge decisions you're not comfortable with, and (3) continue to engage with your child. Characteristics of a satisfactory PICU experience: (1) A caregiver-provider relationship of mutual trust established through clear communication and respectful collaboration, (2) hospital environments that provide physical and social supports to maintain humanity in healthcare, and (3) preparing families for care transitions. Targeted, interdisciplinary approaches to partner with families during critical care may improve their PICU experience and contribute to improved long-term outcomes for PICU survivors.
Objective:
Several studies have investigated the impact of diaries in adult ICUs, which have been used as a tool to support recall and reduce post-traumatic stress disorder in patients and their families. We conducted a scoping review to determine the definition of ICU diaries, and the extent, range, and nature of research conducted on NICU and PICU diaries, describe their use and impact, as well as identify gaps in knowledge and areas for future research.
Data sources:
The following databases were searched from inception to March 2022: Cumulated Index to Nursing and Allied Health Literature, Cochrane Library, Embase, PubMed, and American Psychological Association PsycINFO. Searches were also conducted in the following gray literature databases: Google Scholar, University of South Australia, and WorldCat.
Study selection:
All studies that discussed the use and impact of diaries or journals involving patients (<18 yr old) in PICUs and NICUs and/or their family members were included.
Data synthesis:
Sixteen studies were identified. Most studies defined diaries as daily entries written by nurses and/or family members regarding the patient's condition during their ICU admission. The majority reported that diaries were beneficial to children and their families as they helped to fill in memory gaps, provided a means to express their feelings, and served as effective health communication tools. Several gaps were identified: extent of the use of diaries as a means of communication, the significance of diaries as a coping mechanism for bereaved parents, and the impact of PICU diaries on the children, their families, and healthcare professionals.
Conclusions:
There is a paucity of data on the use of NICU and PICU diaries. Nonetheless, the limited data revealed that NICU and PICU diaries were beneficial to children and their families. Our review demonstrated a heterogeneity in the terminology, content, use of photos, and the author/s of the NICU and PICU diaries. Further research is needed to investigate the impact of the use of NICU and PICU diaries on patient-reported outcomes.
Objectives
To explore how the multi-professional pediatric intensive care unit staff experienced the implementation of the diary.
Research Methodology/Design
Qualitative study using the implementation research approach.
Setting: a six-bed pediatric intensive care unit at a large Italian tertiary care pediatric hospital, treating patients with acute conditions from the Emergency Department or hospital wards.
Main outcome measures
Healthcare providers’ experiences of the implementation of the diaries. Data was collected by focus groups and interviews and thematic analysis was performed.
Findings
Three focus groups and four interviews with staff were conducted after the implementation of thediaries from August 2020 to June 2021. Staff describe an initial disbelief towards the effectiveness of diaries followed by an increasing perception of their relevance for parents’ emotional expression through shared narration. Diaries are reported as a beneficial communication tool between the family, the child, and health care providers, increasing staff understanding of parents’ experiences of their child’s admission and parents’ sense of the care received by their child. For staff, barriers for diary writing were logistics, lack of time, limited sense of ownership, fear of legal retaliation and fear of emotional labor.
Conclusion
Health care providers perceived diaries as beneficial for parents and the healthcare team, potentially supporting their partnership as recommended by Family Centered Care models. The enablers and barriers that emerged for diary writing can support the development of implementation strategies to prevent the reported challenges to diary writing in the healthcare team, enhancing their uptake in the pediatric intensive care unit setting.
The Pediatric Intensive Care Unit (PICU) provides lifesaving interventions to critically ill patients from infancy through adolescence and young adulthood. However, PICU care and its environment often disrupts circadian rhythm (CR) and sleep, which are imperative for healing and healthy growth and development in this vulnerable pediatric population. To optimize sleep in critically ill children, it is vital to understand the heterogeneity of the PICU setting, the complex diagnoses that are managed and the chronological and developmental ages of the patients who are admitted. Children’s sleep requirements are determined by their developmental stage and regulated by routine and neuroplasticity. This chapter provides a thorough review of how neurodevelopment affects pediatric sleep, PICU-specific risk factors that affect sleep dysregulation, and strategies to optimize sleep quality, quantity, and circadian rhythms in critically ill children.KeywordsPediatric critical careNeurodevelopmentSleep in childrenCircadian rhythmDaytime activity ratio estimateActigraphyEEG
Objectives:
Children with severe chronic illness are a prevalent, impactful, vulnerable group in PICUs, whose needs are insufficiently met by transitory care models and a narrow focus on acute care needs. Thus, we sought to provide a concise synthetic review of published literature relevant to them and a compilation of strategies to address their distinctive needs.
Data sources:
English language articles were identified in MEDLINE using a variety of phrases related to children with chronic conditions, prolonged admissions, resource utilization, mortality, morbidity, continuity of care, palliative care, and other critical care topics. Bibliographies were also reviewed.
Study selection:
Original articles, review articles, and commentaries were considered.
Data extraction:
Data from relevant articles were reviewed, summarized, and integrated into a narrative synthetic review.
Data synthesis:
Children with serious chronic conditions are a heterogeneous group who are growing in numbers and complexity, partly due to successes of critical care. Because of their prevalence, prolonged stays, readmissions, and other resource use, they disproportionately impact PICUs. Often more than other patients, critical illness can substantially negatively affect these children and their families, physically and psychosocially. Critical care approaches narrowly focused on acute care and transitory/rotating care models exacerbate these problems and contribute to ineffective communication and information sharing, impaired relationships, subpar and untimely decision-making, patient/family dissatisfaction, and moral distress in providers. Strategies to mitigate these effects and address these patients' distinctive needs include improving continuity and communication, primary and secondary palliative care, and involvement of families. However, there are limited outcome data for most of these strategies and little consensus on which outcomes should be measured.
Conclusions:
The future of pediatric critical care medicine is intertwined with that of children with serious chronic illness. More concerted efforts are needed to address their distinctive needs and study the effectiveness of strategies to do so.
As the progress of critical care medicine has improved the survival rate of critically ill patients, comorbidities and long-term health care have attracted people's attention. The terms "post-intensive care syndrome" (PICS) and "PICS-family" (PICS-F) have been used in non-neurocritical care populations, which are characterized by the cognitive, psychiatric, and physical sequelae associated with intensive care hospitalization of survivors and their families. An intensive care unit (ICU) diary authored by the patient's family members may alleviate the psychological distress of the patient and his or her family. This quality improvement project focused on the development and implementation of the pediatric intensive care unit (PICU) diary in the pediatric critical care setting. The project aims to evaluate the feasibility and the potential efficacy of the PICU diary, measured through parental acceptance and satisfaction. Seventeen families of critically ill children admitted to the PICU received the PICU diary during the implementation period. Twenty-four parents completed the weekly follow-up, and 15 subsequently completed the diary entry evaluation. The use of the diary in the PICU setting is feasible and considered beneficial by families of critically ill children.
Objectives:
To evaluate current international practice in PICUs regarding components of the "Assessing Pain, Both Spontaneous Awakening and Breathing Trials, Choice of Sedation, Delirium Monitoring/Management, Early Exercise/Mobility, and Family Engagement/Empowerment" ("ABCDEF") bundle.
Design:
Online surveys conducted between 2017 and 2019.
Setting:
One-hundred sixty-one PICUs across the United States (n = 82), Canada (n = 14), Brazil (n = 27), and Europe (n = 38) participating in the Prevalence of Acute Rehabilitation for Kids in the PICU study.
Interventions:
None.
Measurements and main results:
Of the 161 participating PICUs, 83% were in academic teaching hospitals and 42% were in free-standing children's hospitals. Median size was 16 beds (interquartile range, 10-24 beds). Only 15 PICUs (9%) had incorporated all six ABCDEF bundle components into routine practice. Standardized pain assessment (A) was the most common (91%), followed by family engagement (F, 88%) and routine sedation assessment (C) with validated scales (84%). Protocols for testing extubation readiness or conducting spontaneous breathing trials (B) were reported in 57%, with 34% reporting a ventilator weaning protocol. Routine delirium monitoring with a validated screening tool (D) was reported by 44% of PICUs, and 26% had a guideline, protocol, or policy for early exercise/mobility (E). Practices for spontaneous breathing trials were variable in 29% of Canadian PICUs versus greater than 50% in the other regions. Delirium monitoring was lowest in Brazilian PICUs (18%) versus greater than 40% in other regions, and family engagement was reported in 55% of European PICUs versus greater than 90% in other regions.
Conclusions:
ABCDEF bundle components have been adopted with substantial variability across regions. Additional research must rigorously evaluate the efficacy of specific elements with a focus on B, D, E, and full ABCDEF bundle implementation. Implementation science is needed to facilitate an understanding of the barriers to ABCDEF implementation and sustainability with a focus on specific cultural and regional differences.
Background
Having a child admitted to the paediatric intensive care unit (PICU) is often an emotional and stressful experience for parents.
Aim
The aim of the study was to explore parents’ experiences during and after their child’s hospitalization in the PICU and to investigate whether parents have a need for post-PICU follow-up.
Material and methods
The research design was a qualitative study inspired by Ricoeur’s phenomenological-hermeneutic approach. The context of the study was a six-bed PICU in a university hospital in Denmark. In 2017, semi-structured interviews were conducted with four couples and three mothers six to 14 weeks after their child had been discharged from the PICU. The data were analysed and interpreted through Ricoeur’s three analytical levels and presented in themes and subthemes.
Findings
Three themes were identified in the analytical process: “The challenging PICU stay”, “The value of a network” and “The uncertain post-PICU trajectory”.
Conclusion
Information, dialogue and interaction with familiar health professionals, the diary written by PICU nurses, the parents’ personal network and social media supported the parents during and after the PICU stay. The parents expressed that post-PICU follow-up was not the most essential but that follow-up initiatives may be arranged individually.
Purpose
The aim of the qualitative study was to explore the meaning of diaries for parents at the Neonatal Intensive Care Unit (NICU).
Findings
Based on Reflexive Grounded Theory, eight parents could be interviewed. By using a NICU diary, parents develop trust that everything will be fine in the end. It appears to be relevant by providing a kind of communication with the child beyond the physical level, reducing hospital atmosphere, strengthening the relationship between parents and nurses, and filling gaps when parents cannot be at the unit. In dealing with the NICU diary, parents are able to adopt strategies for action which result in writing and reading of the diary. Gender-specific differences between mothers and fathers could be outlined.
Conclusion
The NICU diary is a tool to support parents dealing with the situation at the NICU, establishing communication and humanizing critical care.
Survivors of critical illness and treatment in the intensive care unit (ICU) often experience physical or psychological symptoms as part of the post-intensive care syndrome (PICS). Both patients and their families risk symptoms of posttraumatic stress disorder, anxiety, or depression. ICU diaries are used to support the process of psychological recovery. They complement the medical record by addressing the patient directly and describing in layman’s terms what happened in the ICU. The diaries are usually written by nurses but may also be coauthored by other staff, family, or friends, depending on local practice. ICU diaries describe admission to the unit and patient progress through stages of crisis and stabilization in the ICU. Qualitative evaluation of ICU diaries has suggested improvement of illness communication and psychological well-being in patients and families. Quantitative evaluation is inconclusive with some evidence of effect on psychological sequelae but lacking discussion of potential harms.
Diaries are written for patients in intensive care units by staff and relatives, especially when patients experience a disorder of their consciousness, such as delirium. Diary entries are written in common language, describing the situation of the patient. The diary can be read by the patient and the family and support the coping and understanding of what happened. It can function as a tool for supporting communication about different experiences and views of critical illness.
Admission of a child to the pediatric intensive care unit (PICU) has long been recognized as a significant source of stress for both the child and their caregivers. However, it is increasingly recognized that the results of these stresses may last long beyond the date that the patient is discharged from the PICU or hospital. Child life specialists receive special training in child development, family systems, and coping strategies, and this unique set of skills offers an avenue of treatment to the critically ill child not typically able to be provided by other bedside caregivers. Specific interventions that can be provided include developmentally appropriate preparation for procedures needing to be performed in the PICU, a non-clinician presence for the alone child due to parental/family absence, and distraction and/or play therapies designed to provide a degree of “normality” to an abnormal situation. They can also be especially helpful in sitting down with patients/families who are having difficulty coping with the need for a PICU admission and/or the course of illness progression is poor or even maladaptive. By aiding in the development of improved comfort and coping mechanisms, child life therapists can further facilitate an easier transition out of the PICU and return to the home environment. They may also offer an added source of comfort when the outcome requires end-of-life care. Consequently, child life therapists must be considered an integral part of the PICU care team, and their involvement as early as possible following PICU admission should be encouraged.
Objective
Information provided to parents in pediatric intensive care units (PICU) is often complex and uncertain. Our objective is to gain a better understanding of parents' informational needs regarding their child's critical illness, and their sources and mechanisms for gaining information.
Patients and methods
Parents whose children were discharged from a Midwestern university-affiliated children's hospital PICU in the prior 30 days, and health professionals who worked in the PICU for at least one year were eligible. Semi-structured audio-recorded interviews were conducted, transcribed, and analyzed using established qualitative methods.
Results
Of 40 participants, 28 were parents and 12 were health professionals. Types of information needed by parents included information related to their child's PICU stay and hospitalization (e.g., diagnosis, prognosis, treatment plans), and post-discharge care (e.g., home instructions, warning signs, emergency plans). Some parents reported wanting to know everything about their child's condition whereas others reported little to no need for information. Sources of information included health professionals, Internet, family, and other parents. Mechanisms of gaining information included interpersonal interactions between parents and health professionals (e.g., asking questions, rounds, family conferences, modeling, hands-on learning, knowledge testing) and materials that could be viewed independently (e.g., printed materials, parent diaries, videos, white boards, patient portals).
Conclusions
Types and amount of information needed by parents of critically ill children are wide ranging and include details of their child's immediate condition and long-term post-discharge care. Parents use many sources and mechanisms to gain health information and most parents use more than one source or mechanism.
Aim:
The aim of the study was to explore the incidence, use, and scope of patient diaries in paediatric intensive care units (PICUs) in the United Kingdom and Ireland.
Design:
This was an electronic survey sent to 30 PICUs in the United Kingdom and Ireland.
Results:
All PICUs (n = 30) responded, and 43% (n = 13) offered diaries. For those units that did not supply diaries, the reasons given were concerns around the legal and professional implication of using diaries. Parental/carer consent to use a diary was obtained informally (79%, n = 11), and once there was agreement to provide a diary to parents, diaries were usually started immediately (72%, n = 12). Parents were the main contributors to the diaries (94%, n = 17), and the diaries were populated with photographs (94%, n = 15), drawings (100%, n = 16), and stickers (94%, n = 15). The reasons for offering diaries were to fill gaps in memories, to engage with families, and to explain what has happened in lay language. The owner of the diary was reported to be the family (82%, n = 14) and the child (12%, n = 2).
Conclusions:
The use of patient diaries is an evolving intervention in paediatric intensive care settings in the United Kingdom and Ireland. This national survey has provided a clearer picture of how this intervention is used in the United Kingdom and Ireland. PICU patient diaries are used in a significant number of units, and how these are used is relatively standardized, although in some different ways from general ICUs.
Relevance to clinical practice:
This survey provides a baseline for future exploration, understanding, and promotion of patient diaries, as a well evaluated tool for the critically ill child and his or her family.
Purpose of review
Children surviving the pediatric intensive care unit (PICU) with neurologic illness or injury have long-term morbidities in physical, cognitive, emotional, and social functioning termed postintensive care syndrome (PICS). In this article, we review acute and longitudinal management strategies available to combat PICS in children with acquired brain injury.
Recent findings
Few intervention studies in this vulnerable population target PICS morbidities. Small studies show promise for both inpatient- and outpatient-initiated therapies, mainly focusing on a single domain of PICS and evaluating heterogeneous populations. While evaluating the effects of interventions on longitudinal PICS outcomes is in its infancy, longitudinal clinical programs targeting PICS are increasing. A multidisciplinary team with inpatient and outpatient presence is necessary to deliver the holistic integrated care required to address all domains of PICS in patients and families.
Summary
While PICS is increasingly recognized as a chronic problem in PICU survivors with acquired brain injury, few interventions have targeted PICS morbidities. Research is needed to improve physical, cognitive, emotional, and social outcomes in survivors and their families.
Aim:
To synthesize the available evidence focusing on morbidities in pediatric survivors of critical illness that fall within the defined construct of postintensive care syndrome (PICS) in adults, including physical, neurocognitive and psychological morbidities.
Methods:
A comprehensive search was conducted in MEDLINE, EMBASE, the Cochrane Library, PsycINFO, and CINAHL using controlled vocabulary and key word terms to identify studies reporting characteristics of PICS in pediatric intensive care unit (PICU) patients. Two reviewers independently screened all titles and abstracts and performed data extraction. From the 3176 articles identified in the search, 252 abstracts were identified for full text review and nineteen were identified for inclusion in the review. All studies reporting characteristics of PICS in PICU patients were included in the final synthesis.
Results:
Nineteen studies meeting inclusion criteria published between 1995 and 2016 were identified and categorized into studies reporting morbidities in each of three categories-physical, neurocognitive and psychological. The majority of included articles reported prospective cohort studies, and there was significant variability in the outcome measures utilized. A synthesis of the studies indicate that morbidities encompassing PICS are well-described in children who have survived critical illness, often resolving over time. Risk factors for development of these morbidities include younger age, lower socioeconomic status, increased number of invasive procedures or interventions, type of illness, and increased benzodiazepine and narcotic administration.
Conclusion:
PICS-related morbidities impact a significant proportion of children discharged from PICUs. In order to further define PICS in children, more research is needed using standardized tools to better understand the scope and natural history of morbidities after hospital discharge. Improving our understanding of physical, neurocognitive, and psychological morbidities after critical illness in the pediatric population is imperative for designing interventions to improve long-term outcomes in PICU patients.
Purpose
Keeping an ICU patient diary has been reported to benefit the patient's recovery. Here, we investigated the families' experience with reading and writing in patient ICU diaries kept by both the family and the staff.
Methods
We conducted a qualitative study involving 32 semi-structured in-depth interviews of relatives of 26 patients (34% of all family members who visited patients) who met our ICU-diary criterion, i.e., ventilation for longer than 48 hours. Grounded theory was used to conceptualise the interview data via a three-step coding process (open coding, axial coding, and selective coding).
Results
Communicative, emotional, and humanising experiences emerged from our data. First, family members used the diaries to access, understand, and assimilate the medical information written in the diaries by staff members, and then to share this information with other family members. Second, the diaries enabled family members to maintain a connection with the patient by documenting their presence and expressing their love and affection. Additionally, families confided in the diaries to maintain hope. Finally, family members felt the diaries humanized the medical staff and patient.
Conclusions
Our findings indicate positive effects of diaries on family members. The diaries served as a powerful tool to deliver holistic patient- and family-centered care despite the potentially dehumanising ICU environment. The diaries made the family members aware of their valuable role in caring for the patient and enhanced their access to and comprehension of medical information. Diaries may play a major role in improving the well-being of ICU-patient families.
Objectives:
This study explored the diagnosis of posttraumatic stress disorder (PTSD) in children and adolescents following pediatric intensive care unit (PICU) admission. Specifically, the study aimed to describe the presentation and prevalence of PTSD symptoms 6 months postdischarge, explore the validity of the DSM-IV PTSD algorithm and alternative PTSD algorithm (PTSD-AA) in school-aged children and adolescents, and examine the diagnostic utility of Criterion C3 (inability to recall aspects of a trauma) in this cohort.
Methods:
Participants were 59 children aged 6-16, admitted to PICU for at least 8 hours. PTSD was assessed via diagnostic interview (Children's PTSD Inventory) 6 months following PICU discharge.
Results:
The PTSD-AA was found to provide the most valid measure of PTSD at 6 months. Removing Criterion C3 improved the validity of Criterion C.
Conclusions:
This study supports the use of the PTSD-AA excluding Criterion C3 for identifying highly traumatized children and adolescents following PICU admission.
Relatives of patients recovering from critical illness are at risk of developing posttraumatic stress disorder.
To test whether providing a diary to intensive care patients and their relatives reduces the level of symptoms related to posttraumatic stress disorder in the relatives.
Observational study of close family members of patients who stayed more than 72 hours in an intensive care unit, recruited in 2 centers of a 12-center randomized controlled trial examining the effect of a diary outlining the details of the patients' stay in the intensive care unit on the development of new-onset posttraumatic stress disorder in patients. The close family members of the patients were recruited to examine the additional effect of the provision of the patient's diary on the family members' symptoms related to posttraumatic stress syndrome.
Thirty-six family members were recruited, and 30 completed the study. Family members of patients who received their diary at 1 month had lower levels of symptoms related to posttraumatic stress disorder (P = .03) at the 3-month follow-up than did the control family members.
Provision of a diary may help psychological recovery in patients' families after critical illness.
After a stay in the intensive care unit, patients risk experiencing delusional memories, memory loss, and symptoms of posttraumatic stress. Since the 1990s, diaries have been kept for intensive care unit patients to help fill in memory gaps, aid psychosocial recovery, and improve health-related quality of life. More insight is needed into the application of diaries. The aim of our study was to explore how patients and relatives use diaries in the context of the illness trajectory.
Qualitative multicentered design using in-depth semistructured interview technique.
A nine-bed general intensive care unit and a 13-bed thoracic surgical intensive care unit in Denmark.
A sample of 19 patients at 6-12 months postintensive care unit discharge and 13 relatives (n = 32).
Intensive care diaries and handover 1 or 3 months postintensive care unit discharge.
Grounded theory method was used to explore the use of diaries as a psychosocial process of recovery involving patients and relatives. Data were managed by NVivo software. The core category was "constructing the illness narrative," which was a process of narration embedded in our emerging theory of psychosocial recovery after critical illness. The main categories within the patient perspective were information acquisition and gaining insight, and the main categories within the relative perspective were supporting the patient, supporting oneself, and negotiating access.
Intensive care diaries are useful to patients as well as their relatives. Patients need to construct their illness narrative, and diaries are among the sources they use. The patients' project was to combine various sources of information in a process of information acquisition, narration, and evolving insight progressing toward recovery. The relatives supported the patients' project and also supported themselves by using the diary to uphold their own healing process. We recommend intensive care diaries as a low-technology, low-cost rehabilitative intervention for patients and relatives to help bridge the span from intensive care to recovery.
Patients recovering from critical illness have been shown to be at risk of developing Post Traumatic Stress disorder (PTSD). This study was to evaluate whether a prospectively collected diary of a patient's intensive care unit (ICU) stay when used during convalescence following critical illness will reduce the development of new onset PTSD.
Intensive care patients with an ICU stay of more than 72 hours were recruited to a randomised controlled trial examining the effect of a diary outlining the details of the patients ICU stay on the development of acute PTSD. The intervention patients received their ICU diary at 1 month following critical care discharge and the final assessment of the development of acute PTSD was made at 3 months.
352 patients were randomised to the study at 1 month. The incidence of new cases of PTSD was reduced in the intervention group compared to the control patients (5% versus 13%, P = 0.02).
The provision of an ICU diary is effective in aiding psychological recovery and reducing the incidence of new PTSD.
NCT00912613.
The aim of the study was to explore patients' experiences and perceptions of receiving intensive care diaries. A focus group and intensive care diaries for four former ICU patients were analysed to understand what works and what needs further development for patients who receive a diary. The study had a triangulated approach and group dynamics were described as the focus group was used to explore agreement and disagreement among the participants. Little is known about the content of intensive care diaries and their usefulness and meaning for the patients. The participants in our study agreed that the diary alone provided incomplete information and reading the diary did not necessarily bring back memories, but helped complete their story. The patients needed to know what they had gone through in ICU and wished to share their story with their family. We conclude that diaries might help post-ICU patients to gradually construct or reconstruct their own illness narrative, which is pieced together by their fragmented memory, the diary, the pictures, the hospital chart and the accounts from family and friends.
The objective was to describe the structure and content of patient diaries written for critically ill patients in Danish intensive care units (ICUs).
Critical illness is associated with physical and psychological aftermath including cognitive impairment and post-traumatic stress. Patient diaries written in the intensive care unit are used to help ICU-survivors come to terms with their illness.
The study had a qualitative, descriptive and explorative design, using a narrative approach of analysis. Data were analysed on several levels: extra-case level, case level, diary-entry level, and sub-entry level. The sample consisted of 25 patient diaries written by critical care nurses in 2007 for patients at a general ICU in Denmark.
The base narrative describes three stages: crisis, turning point, and normalisation. Each case includes parallel plots of nurse, patient and family, which converge during normalisation. Each diary is structured by: summary, daily entries and end note. Each diary entry is structured by: greeting, narrator status, patient status, family status/contextual cues and sign-off note.
Patient diaries acknowledge the patient experience and provide new insights into nursing performance. This study offers a framework for understanding ICU patient diaries, which may facilitate cross-unit comparisons and support future guideline development. The dual perspectives of patient diaries and the ambiguous ownership of the narratives may pave the way for insights to improve critical care nursing and ICU rehabilitation.
Objective
Family members of critically ill patients can suffer symptoms of post-intensive care syndrome-family (PICS-F), including anxiety, depression, and posttraumatic stress disorder (PTSD) with a diminished quality of life. Our aim was to examine the relationship between coping strategies used by family decision-makers (FDMs) of critically ill patients and the severity of PICS-F symptoms and to examine the relationship between FDM PICS-F symptoms and health-related quality of life (HRQOL).
Method
A single-center, prospective, longitudinal descriptive study was undertaken of FDMs of intensive care unit (ICU) patients admitted to a large tertiary care hospital. PICS-F symptoms and coping strategy use were measured upon ICU admission (T1), 30 days (T2) after ICU admission, and 60 days (T3) after ICU admission. HRQOL was measured by the Short Form-36 version 2 at T1 and T3.
Results
We found a significant prevalence of anxiety (45.8%), depression (25%), and PTSD (11.1%) symptoms among FDMs over the course of the study. The patient mortality rate in our sample was 50%. The HRQOL mental summary score in FDMs was low at T1 and decreased to M = 41.72 (standard deviation = 12.47) by T3. Avoidant coping demonstrated moderate relationships with PTSD symptoms and anxiety at T3. A previous history of anxiety, depression, or PTSD was a significant predictor of PICS-F symptom severity and prevalence. PICS symptom severity at T3 explained 75% of the variance in HRQOL mental summary score.
Significance of results
This study describes a significant prevalence of PICS-F symptoms in FDMs with a diminished mental HRQOL.
Context: Over the past several decades, advances in pediatric critical care have saved many lives. As such, contemporary care has broadened its focus to also include minimizing morbidity. Post-Intensive Care Syndrome, also known as PICS, is a group of cognitive, physical and mental health impairments that commonly occur in patients after intensive care unit discharge. PICS has been well-conceptualized in the adult population but not in children.
Objective: To develop a conceptual framework describing Post-Intensive Care
Syndrome in pediatrics (PICS-p) that includes aspects of the experience that are
unique to children and their families.
Data Synthesis: The PICS-p framework highlights the importance of baseline status, organ system maturation, psychosocial development, the interdependence of family, and trajectories of health recovery that can potentially impact a child's life for decades.
Conclusion: PICS-p will help illuminate the phenomena of surviving childhood critical illness and guide outcomes measurement in the field. Empirical studies are now required to validate and refine this framework, and to subsequently develop a set of core outcomes for this population. With explication of PICS-p, the discipline of pediatric critical care will then be in a stronger position to map out recovery after pediatric critical illness and to evaluate interventions designed to mitigate risk for poor outcomes with the goal of optimizing child and family health.
Objective:
To explore children's' and families' experiences of using intensive care diaries after discharge and the role of diaries in the process of recovering from a stay in the paediatric intensive care unit.
Design and setting:
Qualitative, exploratory design. Data collection consisted of semi-structured interviews with five children and their families, conducted four to six months after discharge from the intensive care unit. Inclusion criteria were children and their families, with a stay for more than three days who had a diary written for them. Data were analysed using thematic analysis FINDINGS: Three main themes emerged: (i) value to the entire family, (ii) creating memories, (iii) the importance of pictures.
Conclusion:
Diaries were used after discharge as a support for both children and families and played a role in making the paediatric intensive care experience meaningful by providing explanations and coherence. The findings suggest that a diary can serve as a catalyst for the coping process of the family unit. Findings also confirm how the children's memories are characterised by a sense of unreality. The diary could thus help fill in some of the missing picture to support the children in understanding their story.
Patients discharged from intensive care units are at risk of short- and long-term physical, cognitive, and emotional symptoms known as post-intensive care syndrome. Family members of intensive care unit patients are at risk of similar symptoms known as post-intensive care syndrome-family. Both syndromes are common, and strategies to reduce risk factors should be employed. An intensive care unit diary project to help reduce these syndromes was implemented in 2 intensive care units using an evidence-based framework. The effects of these diaries were studied using the Family Satisfaction with Care in the Intensive Care Unit survey. Rates of referrals to a postintensive care unit recovery clinic were also observed in relation to the diaries. Although preliminary data did not reveal a significant increase in family satisfaction, the surveys provided important staff feedback. The diaries fostered feelings of compassion and caring as well as built trust between staff and family members of intensive care unit patients. The diaries increased referrals to the postintensive care unit recovery clinic.
Hospitalization in the intensive care unit can be a stressful time for patients and their family members. Patients' family members often have difficulty processing all of the information that is given to them. Therefore, an intensive care unit diary can serve as a conduit for synthesizing information, maintaining connection with patients, and maintaining a connection with family members outside the intensive care unit. Paper intensive care unit diaries have been used outside the United States for many years. This article explores the development of an electronic intensive care unit diary using a rapid prototyping model to accelerate the process. Initial results of design testing demonstrate that it is feasible, useful, and desirable to consider the implementation of electronic intensive care unit diaries for patients at risk for post-intensive care syndrome.
Objective:
Intensive care unit diaries have been shown to improve post-critical illness recovery, however, prior reports of diary implementation are heterogeneous. We sought to construct a common framework for designing and implementing Intensive Care Unit diaries based on prior studies.
Review method used/data sources:
We conducted a focused review of the literature regarding intensive care diaries based on a systematic search of several databases. Two reviewers assessed 56 studies and data were abstracted from a total of 25 eligible studies conducted between 1990 and 2014. We identified key information regarding the development, design, and implementation of the journals. We then grouped elements that appeared consistently across these studies within three main categories: (1) diary target populations; (2) diary format and content; and (3) the manner of diary return and follow-up.
Results:
Most studies were conducted in European countries in adult intensive care units and targeted patients in both medical and surgical units. The timing of diary initiation was based on the elapsed length of stay or duration of mechanical ventilation. We categorised diary format and content as: entry content, authors, use of standardised headings, type of language, initiation, frequency of entries, and physical location of diaries. Diaries were hand written and many studies found that photographs were an essential element in ICU diaries. We categorised the manner of diary return and follow-up. The context in which intensive care unit diaries were returned were felt to be important factors in improving the use of diaries in recovery.
Conclusions:
In conclusion, we describe a common framework for the future development of intensive care unit diaries that revolves around the target population for the diaries, their format and content, and the timing of their use. Future studies should address how these elements impact the mechanisms by which intensive are diaries exert beneficial effects.
Background:
Diaries written by nurses for the critically ill patient helps relatives cope and support the patient. When relatives participate in writing a diary for the critically ill, patients appreciate it. Furthermore, the diary may reduce post-traumatic stress disorder, anxiety and depression in patients and relatives.
Aim:
To explore how relatives perceive reading and writing in the diary and how it affects their well-being.
Search strategies:
A systematic search was carried out in the databases PubMed, Embase, CiNAHL and PsycINFO and supplemented by a citation search in Scopus on four-selected articles. Finally, 10 articles were included in this review structured by the Matrix method.
Inclusion criteria:
(a) Original scientific work, (b) relatives participation and experience of the diary as subject and (c) diaries studied in an intensive care unit setting.
Findings:
Relatives were given instructions on how to write in the diary. They expressed strong feelings in the diary in a very different way than health care staff. The relatives used the diary themselves to gain understanding and to cope. The diary has been shown to prevent post-traumatic stress symptoms.
Conclusion:
The relatives express their love for the patient, when they author the diary and this may be beneficial to the relatives as it helps them cope and support the patient. The organized account of the time in the intensive care unit in the diary may explain the diary's ability to reduce the occurrence of post-traumatic stress disorder; however, further research is needed to confirm this. How relatives interact through writing and reading a diary, originally intended for the patient, is unclear.
Relevance to clinical practice:
Providing relatives with a diary may help them cope. However, caution should be taken as possible adverse effects related to the interaction between relatives in the diary may not yet be known.
To assess the effect of an intensive care unit (ICU) diary versus no ICU diary on patients, and their caregivers or families, during the patient's recovery from admission to an ICU.
Systematic review of randomized controlled trials (RCTs) and clinical controlled trials.
CENTRAL, MEDLINE, CINAHL, EMBASE, PsycINFO, PILOT; Web of Science Conference Proceedings, clinical trial registries and reference lists of identified trials.
Studies evaluated the effectiveness of patient diaries, when compared to no ICU diary, for patients or family members to promote recovery after admission to ICU were included. Outcome measures for describing recovery from ICU included the risk of post-traumatic stress disorder (PTSD), anxiety, depression and post-traumatic stress symptomatology, health-related quality of life and costs. We used standard methodological approaches as expected by The Cochrane Collaboration. Two review authors independently reviewed titles for inclusion, extracted data and undertook risk of bias according to pre-specified criteria.
We identified three eligible studies; two describing ICU patients (N=358), and one describing relatives of ICU patients (N=30). No study adequately reported on risk of PTSD as described using a clinical interview, family or caregiver anxiety or depression, health-related quality of life or costs. Within a single study there was no clear evidence of a difference in risk for developing anxiety (RR 0.29, 95% CI 0.07-1.19) or depression (RR 0.38, 95% CI 0.12-1.19) in participants who received ICU diaries, in comparison to those that did not receive a patient diary. Within a single study there was no evidence of difference in median post-traumatic stress symptomatology scores (diaries 24, SD 11.6; no diary 24, SD 11.6) and delusional ICU memory recall (RR 1.04, 95% CI 0.84-1.28) between the patients recovering from ICU admission who received patient diaries, and those who did not. One study reported reduced post-traumatic stress symptomatology in family members of patients recovering from admission to ICU who received patient diaries (median 19; range 14-28), in comparison to no diary (median 28; range 14-38).
Currently there is minimal evidence from RCTs of the benefits or harms of patient diaries for patients and their caregivers or family members. A small study has described their potential to reduce post-traumatic stress symptomatology in family members. However, there is currently inadequate evidence to support their effectiveness in improving psychological recovery after critical illness for patients and their family members.
Copyright © 2015 Elsevier Ltd. All rights reserved.
Aims and objectivesTo critically appraise the available literature and summarise the evidence related to the use, prevalence, purpose and potential therapeutic benefits of intensive care unit diaries following survivors' discharge from hospital and identify areas for future exploration. Background
Intensive care unit survivorship is increasing as are associated physical and psychological complications. These complications can impact on the quality of life of survivors and their families. Rehabilitation services for survivors have been sporadically implemented and lack an evidence base. Patient diaries in intensive care have been implemented in Scandinavia and Europe with the intention of filling memory gaps, enable survivors to set realistic recovery goals and cement their experiences in reality. DesignA review of original research articles. Methods
The review used key terms and Boolean operators across a 34-year time frame in: CIHAHL, Medline, Scopus, Proquest, Informit and Google Scholar for research reports pertaining to the area of enquiry. Twenty-two original research articles met the inclusion criteria for this review. ResultsThe review concluded that diaries are prevalent in Scandinavia and parts of Europe but not elsewhere. The implementation and ongoing use of diaries is disparate and international guidelines to clarify this have been proposed. Evidence which demonstrates the potential of diaries in the reduction of the psychological complications following intensive care has recently emerged. Results from this review will inform future research in this area. Conclusions
Further investigation is warranted to explore the potential benefits of diaries for survivors and improve the evidence base which is currently insufficient to inform practice. The exploration of prospective diarising in the recovery period for survivors is also justified. Relevance to clinical practiceIntensive care diaries are a cost effective intervention which may yield significant benefits to survivors.
Diaries in the Intensive Care Unit (ICU) support patients and relatives during and after a stay on the ICU. Barriers to implementation of the ICU diary are workload, unwanted closeness to patients and lack of time.
The purpose of the study was to evaluate the time nurses consume writing an ICU diary. Further questions were to examine whether the first diary entry, which includes a more detailed description about the admission, consumes more time than other entries and whether the time taken depends on experience or workload of the nurses.
Quantitative, prospective, international observational multicentre study in four ICUs within the international diary network in Germany (two ICUs), Sweden and Switzerland (one ICU each).
During a 6-month period in 2012/2013 nurses measured the time they consumed writing a diary in minutes and seconds, the number of diaries they contributed to and total number of diary entries, the nurse-patient ratio, their level of experience in writing diaries, interruptions while writing in a diary and additional information like photographs or follow-up visits.
In summary 29 diaries were collected which included 195 written entries. The first entry needed significantly more time than following entries (first entry: mean 13:33 min versus following entries: mean 5:31, p < 0·001). The mean time for following entries differed significantly between the countries: Switzerland: 6:14, Sweden 5:31 and Germany 3:36 (p < 0·001). Nurses with more experience used more time to write a diary (not significant). With increasing nurse-patient-ratio the time decreased for following entries (ratio 1:1: mean 5:42, ratio 1:2: mean 5:27, ratio 1:3: mean 3:12, p = 0·007).
Writing a diary for patients and relatives means an additional amount of time and workload, but according to the increased quality of nursing the time seems to be feasible for implementation. The measured time was self-reported, thus including possible bias for the results.
: Family members of intensive care patients may experience stressors that threaten both personal health and family integrity. This study found that family members endure multiple concurrent stressors and exhibit numerous behavioral responses, including changes in eating, sleeping, activity, and family roles and responsibilities. Nurses can promote family integrity with interventions that address these behavioral changes and promote normal behavior patterns. [Dimens Crit Care Nurs 2000:19(4):40-9]
To establish longitudinal rates of post-traumatic stress in a cohort of child-parent pairs; to determine associations with poorer outcome.
This was a prospective longitudinal cohort study set in a 21-bed unit. In total 66 consecutive admissions aged 7-17 years were screened with one parent at 3 and 12 months post-discharge. Measures used were the Children's Revised Impact of Event Scale (CRIES-8) and the SPAN (short form of Davidson Trauma Scale).
In total 29 (44 %) child-parent pairs contained at least one member who scored above cut-off 12 months after discharge, with scores increasing over time for 18 parents and 26 children. At 3 months, 28 (42 %) parents and 20 (32 %) children scored above cut-off; at 12 months the rates were 18 (27 %) parents and 17 (26 %) children. Parents scoring above cut-off at 12 months were more likely to have had a child admitted non-electively (100 % vs. 77 %, p = 0.028); had higher 3-month anxiety scores (11.5 vs. 4.5, p = 0.001) and their children had higher post-traumatic stress scores at 3 months (14 vs. 8, p = 0.017). Children who scored above cut-off at 12 months had higher 3-month post-traumatic stress scores (18 vs. 7, p = 0.001) and higher Paediatric Index of Mortality (PIM) scores on admission (10 vs. 4, p = 0.037).
The findings that (a) nearly half of families were still experiencing significant symptoms of post-traumatic stress 12 months after discharge; (b) their distress was predicted more by subjective than by objective factors and (c) many experienced delayed reactions, indicate the need for longer-term monitoring and more support for families in this situation.
Unlabelled:
Many ICU-patients have memory-gaps which may affect their recovery. A tool in the recovery can be an ICU-diary to explain and clarify thoughts and events from the ICU-period. There are different standards for the content in the ICU-diary. The aim of this study was to identify the preferred content and usefulness of an ICU-diary as described by ICU-patients.
Method:
A descriptive, exploratory cohort design with a mixed method approach. The patients answered a questionnaire (n=115) and participated in an interview (n=15) six months after the ICU-stay. Data analysis was carried out in three stages; the questionnaire was analysed by descriptive statistics and categorised by content (four open-ended questions) and the interviews were analysed by manifest content analysis.
Results:
The patients were explained that detailed information about daily activities and medical facts had to be included to understand and give a sense of coherence of what had happened. The content in the ICU-diary had to be chronological in order to follow the process in which photos were an important part. The patients re-read the ICU-diary during the recovery which helped them to fill in the memory gaps and used it as a tool for communication.
Conclusion:
To construct a coherent story, it was essential that the ICU-diary was complete and were amplified by photos, all appearing in a chronological order. The results of this study could form a basis for further developments of standards and guidelines for ICU-diaries.
To assess the impact of an intensive care unit diary on the psychological well-being of patients and relatives 3 and 12 months after intensive care unit discharge.
Prospective single-center study with an intervention period between two control periods.
Medical-surgical intensive care unit in a 460-bed tertiary hospital.
Consecutive patients from May 2008 to November 2009 and their relatives. Study inclusion occurred after the fourth day in the intensive care unit.
A diary written by both the patient's relatives and the intensive care unit staff.
Patients and relatives completed the Hospital Anxiety and Depression Scale and Peritraumatic Dissociative Experiences Questionnaire 3 months after intensive care unit discharge, and completed the Impact of Events Scale assessing posttraumatic stress-related symptoms 12 months after intensive care unit discharge. Of the 378 patients admitted during the study period, 143 were included (48 in the prediary period, 49 in the diary period, and 46 in the postdiary period). In relatives, severe posttraumatic stress-related symptoms after 12 months varied significantly across periods (prediary 80%, diary 31.7%, postdiary 67.6%; p<.0001). Similar results were obtained in the posttraumatic stress-related symptom score after 12 months in the surviving patients (prediary 34.6 ± 15.9, diary 21 ± 12.2, and postdiary 29.8 ± 15.9; p = .02).
The intensive care unit diary significantly affected posttraumatic stress-related symptoms in relatives and surviving patients 12 months after intensive care unit discharge.
The family response to critical illness includes development of adverse psychological outcomes such as anxiety, acute stress disorder, posttraumatic stress, depression, and complicated grief. This cluster of complications from exposure to critical care is now entitled postintensive care syndrome-family. Adverse psychological outcomes occur in parents of neonatal and pediatric patients and in family members of adult patients, and may be present for >4 yrs after intensive care unit discharge. Psychological repercussions of critical illness affect the family member's ability to fully engage in necessary care-giving functions after hospitalization.
It has been suggested that the manner in which healthcare workers communicate with family members and the way in which families are included in care and decision-making, may affect long-term outcomes. Preventive strategies for optimal communication and inclusion in care are reviewed.
Many tools are available to assess the risk for and to diagnose postintensive care syndrome-family conditions during hospitalization and at intervals after discharge.
Visits after discharge, support groups, and clinics have been proposed for assessing the need for professional referrals as well as for treating family members when psychological illness persists. Studies evaluating these measures are reviewed.
Millions of patients are discharged from intensive care units annually. These intensive care survivors and their families frequently report a wide range of impairments in their health status which may last for months and years after hospital discharge.
To report on a 2-day Society of Critical Care Medicine conference aimed at improving the long-term outcomes after critical illness for patients and their families.
Thirty-one invited stakeholders participated in the conference. Stakeholders represented key professional organizations and groups, predominantly from North America, which are involved in the care of intensive care survivors after hospital discharge.
Invited experts and Society of Critical Care Medicine members presented a summary of existing data regarding the potential long-term physical, cognitive and mental health problems after intensive care and the results from studies of postintensive care unit interventions to address these problems. Stakeholders provided reactions, perspectives, concerns and strategies aimed at improving care and mitigating these long-term health problems.
Three major themes emerged from the conference regarding: (1) raising awareness and education, (2) understanding and addressing barriers to practice, and (3) identifying research gaps and resources. Postintensive care syndrome was agreed upon as the recommended term to describe new or worsening problems in physical, cognitive, or mental health status arising after a critical illness and persisting beyond acute care hospitalization. The term could be applied to either a survivor or family member.
Improving care for intensive care survivors and their families requires collaboration between practitioners and researchers in both the inpatient and outpatient settings. Strategies were developed to address the major themes arising from the conference to improve outcomes for survivors and families.
EGEROD I, STORLI SL and ÅKERMAN E. Nursing Inquiry 2011; 18: 235–246 Intensive care patient diaries in Scandinavia: a comparative study of emergence and evolution
Critical illness and intensive care therapy are often followed by psychological problems such as nightmares, hallucinations, delusions, anxiety, depression, and symptoms of posttraumatic stress. Intensive care patient diaries have been kept by nurses and the patients’ family since the early 1990s in the Scandinavian countries to help critically ill patients come to terms with their illness after hospital discharge. The aim of the study was to describe and compare the emergence and evolution of intensive care patient diaries in Denmark, Norway, and Sweden. The study had a comparative international design using secondary analysis of qualitative data generated by key-informant telephone interviews with intensive care nurses (n = 114). The study showed that diaries were introduced concurrently in the three Scandinavian countries as a grass-roots initiative by mutual cross-national inspiration. The concept has evolved from a pragmatic practice to an evidence-based domain of inquiry propelled by academically prepared nurses. Several schools of thought were identified in our study: diaries as (i) a therapeutic instrument, (ii) an act of caring, (iii) an expression of empathy, and (iv) a hybrid of the above. Diaries have the potential to fulfill the existential needs of patients who struggle to make sense of their experiences and construct their own illness narrative.
The aim of this study was to obtain more knowledge about the background, extent and implementation of diaries in Norwegian intensive care units (ICUs) providing mechanical ventilation to adult patients.
The growing understanding of long-term consequences of intensive care therapy has compelled nurses to introduce patient diaries to prevent problems after discharge from ICU. Research on this practice is limited.
The study had a qualitative descriptive design, and was conducted by means of semi-structured telephone interviews with 30 participants, all experienced intensive care nurses. The strategy of analysis was a template organizing style.
The findings show that 31 out of 70 ICUs offer patient diaries, and many units have a long history of diary writing. Most of the units have some kind of guidelines, and the study has shown that diaries serve dual purposes; one of caring and another of therapy. Although these two dimensions seemingly present a paradox from a theoretical point of view, a combination appears to be at work in clinical practice. This may be explained by a tendency in nursing to regard caring as superior to therapy. The writing frequency varies, and the units that reported high activity provided follow-up programs in addition to diary writing. Diary writing as a nursing intervention is threatened by a lack of funding.
To describe and compare the extent and application of patients' diaries in Sweden.
Since 1991, patient diaries have been used in intensive care unit (ICU) follow-up in Sweden. There is paucity of relevant data evaluating the effect of this tool and also on what premises patients are enrolled. Likewise, data are sparse on the diaries' design, content structure and the use of photographs.
Descriptive explorative design by a semi-structured telephone interview.
The interview results were analysed with descriptive statistics and differences between the ICU levels were explored by chi(2) analysis. Qualitative manifest content analysis was performed to explore the purpose of diary writing.
Of all ICUs (n = 85), 99% responded and 75% used diaries. The source of inspiration was collegial rather than from scientific data. The main reason for keeping a diary was to help the patient to recapitulate the ICU stay. Discrepancies between the different levels of ICUs were detected in patient selection, dedicated staff for follow-up and the use of photographs. Comparison between the chi(2) analysis and the content analysis outcome displayed incongruence between the set unit-goals and the activities for achievement but did not explain the procedural differences detected.
The uses of diaries in post ICU follow up were found to be common in Sweden. A majority used defined goals and content structure. However, there were differences in practice and patient recruitment among the levels of ICUs. These discrepancies seemed not to be based on evidence-based data nor on ongoing research or evaluation but merely on professional judgement. As ICU follow-up is resource intense and time consuming, it is paramount that solid criteria for patient selection and guidelines for the structure and use of diaries in post-ICU follow-up are defined.
To evaluate the effect of a prospective diary intervention on levels of anxiety and depression in a group of intensive care unit survivors.
Pragmatic randomized controlled trial.
Adult intensive care unit, medical/surgical wards of a district general hospital and community bases.
A total of 36 patients who were admitted to the intensive care unit between March 2006 and March 2007 for a minimum of 48 hrs.
Prospective diary kept by nursing staff for the duration of the patient's stay on intensive care unit, containing daily information about their physical condition, procedures and treatments, events occurring on the unit, and significant events from outside the unit.
At initial assessment, almost half of patients fell into the "disorder likely" category on the Hospital Anxiety and Depression Scale (44% for anxiety and 47.2% for depression). Paired-samples Student's t tests to compare the Hospital Anxiety and Depression Scale scores at time 1 and time 2 in the two participant groups revealed that the experimental group displayed statistically significant decreases in both anxiety (t (1,17) = 2.65, p < 0.05) and depression (t (1,17) = 3.33, p < 0.005) scores, while the control group did not, a difference attributed to the diary intervention.
Survivors of critical illnesses are likely to experience clinically significant symptoms of anxiety and depression following their discharge from hospital. The prospective diary intervention designed to help patients understand what happened to them in intensive care and it has a significant positive impact on anxiety and depression scores almost 2 months after patients' discharge from intensive care unit. Attempts to replicate these results using larger samples are therefore encouraged, with the aim of informing best practice guidelines.
In this study, parents were asked which aspects of their experience of having a child in intensive care had caused them the most distress and how they continued to be affected by these experiences.
Semi-structured interviews held with 32 mothers and 18 fathers of children admitted to a paediatric intensive care unit 8 months earlier, were audiotaped, transcribed and subjected to a thematic analysis.
The setting was an eight-bed paediatric intensive care unit in an inner city teaching hospital.
Significant themes included the vividness of parents' memories of admission; the intensity of distress associated with times of transition and the lasting impact of their experience, in terms both of the ongoing need to protect their child and in relation to their priorities in life. Fathers reported different coping strategies, spent less time on the unit and were less likely than mothers to report fearing that their child would die.
Parents report significant and persisting distress. Further research is needed on how best to support them acutely and in the longer term.
The underlying aim of this study was to obtain knowledge about the questions which could be of interest for a qualitative interview study, and for the planning and construction of a comparative study. The immediate aim was, however, to investigate whether the diary was of importance to patients after their discharge from the ICU or for relatives, following patients' deaths in the ICU. A diary was kept for nine months concerning ten patients together with eight patients who later died in the ICU. All of the ten patients, and four of the eight deceased patients' relatives, answered a questionnaire consisting of five close-ended and two open-ended questions. The participants were encouraged to comment upon all the questions. All participants read the diary. Seven patients stated that it helped them to remember their ICU stay and two that it did not. It helped them to re-live and come to terms with their serious illness/injury and recall what had happened. For those who could not recollect their ICU stay, the diary helped them to remember 'the lost time'. All the relatives except one stated that it helped them to return and adjust to everyday life; made it easier to accept what had happened; and to understand the seriousness of the patient's injury or disease.
To explore the use of a diary as an aid in debriefing patients and relatives following critical illness.
Observation study.
Intensive care unit of a 500-bed hospital.
Fifty-one critically ill patients and their relatives.
A daily account of the patient's progress was written in everyday language by nursing staff, photographs were added as necessary. The booklet was given to the patient or a relative at a follow-up appointment 2 weeks after discharge from the unit. A standard questionnaire was mailed 6 months later, responses were analyzed by an independent observer.
All diaries had been read by survivors (n = 41) or relatives (n = 10), 51% of the diaries had been read more than 10 times. Comments in the questionnaires were graded as very positive (39%), positive (28%) and neutral (33%).
A detailed narrative of the patient's stay is a useful tool in the debriefing process following intensive care.
Family members of intensive care patients may experience stressors that threaten both personal health and family integrity. This study found that family members endure multiple concurrent stressors and exhibit numerous behavioral responses, including changes in eating, sleeping, activity, and family roles and responsibilities. Nurses can promote family integrity with interventions that address these behavioral changes and promote normal behavior patterns.
Children hospitalized in pediatric intensive care units (PICUs) are subjected to highly invasive interventions necessary in overcoming the critical period of their illness, yet little is known about their subsequent psychological adjustment. The purposes of this study were to compare the psychological responses of children hospitalized in a PICU with those of children hospitalized on a general ward and to identify clinically relevant factors that might be associated with psychological outcome. A prospective cohort design was used to follow 120 children for 6 months after PICU and ward discharge. Groups were compared on the children's sense of control over their health, their medical fears, posttraumatic stress, and changes in behavior. Relationships between children's responses and their age, the invasive procedures to which they were exposed, severity of illness, and length of hospital stay were also examined. No significant group differences were found. However, children who were younger, more severely ill, and who endured more invasive procedures had significantly more medical fears, a lower sense of control over their health, and ongoing posttraumatic stress responses for 6 months postdischarge. Findings indicate that regardless of the hospital setting, invasiveness coupled with length of stay and severity of illness in young children may have adverse long-term effects.
To determine whether paediatric intensive care unit (PICU) admission is associated with greater psychiatric morbidity in children and parents as compared with general paediatric ward admissions.
Retrospective cohort study.
Paediatric intensive care unit and two general paediatric wards of a London teaching hospital.
Children aged 5-18 years discharged from PICU (exposed cohort) and general paediatric wards (unexposed cohort) 6-12 months previously, together with their parents.
Children: the Clinician Administered Post Traumatic Stress Disorder (PTSD) Scale for Children (CAPS-C), the Impact of Event Scale (IES), Strengths and Difficulties Questionnaire, Birleson Depression Scale, Revised Children's Manifest Anxiety Scale, Child Somatization Inventory. Parents: IES, General Health Questionnaire, Beck Depression Inventory, Hospital Anxiety and Depression Scale. Thirty-five of 46 (76%) PICU-discharged families and 33 of 41 (80%) from general paediatric wards participated. Valid CAPS-C data were obtained for 19 PICU-admitted children and 27 children admitted only to the general paediatric ward; 4/19 (21%) of PICU-discharged children developed PTSD (compared with none of 27 ward admissions), p=0.02. PICU children had significantly more PTSD features of irritability and persistent avoidance of reminders of the admission. Parents of PICU children were more likely to screen positive for PTSD (9/33 (27%) compared with 2/29 (7%) parents of ward-admitted children), p=0.04. There were no significant differences between the groups for other measures of psychopathology.
Post traumatic stress disorder diagnosis and symptomatology is significantly more common in families where a child has been admitted to the PICU. Consideration should be given to providing psychological support for children and parents after PICU admission.
This longitudinal, descriptive study described the level of depressive symptoms in mothers of preterm infants from birth through 27 months corrected age and examined factors associated with depressive symptoms. The framework for the study was guided by an ecological developmental systems perspective and an adaptation of the Preterm Parental Distress Model.
In this model, we hypothesize that a mother's emotional distress to the birth and parenting of a prematurely born child is influenced by personal and family factors, severity of the infant's health status, and illness-related stress and worry. Participants were 102 mothers of preterm infants who were off the ventilator and not otherwise dependent on major technology at enrollment.
Mean depressive symptoms scores on the Center for Epidemiologic Studies Depression Scale (CES-D) during hospitalization were high and more than half the mothers (63%) had scores of > or =16 indicating risk of depression. Depressive scores declined over time until 6 months and then were fairly stable. Unmarried mothers, mothers of infants who were rehospitalized, and mothers who reported more maternal role alteration stress during hospitalization and worry about the child's health had more depressive symptoms through the first year. Mothers who reported more parental role alteration stress during hospitalization (odds ratio [OR] = 1.570, 95% confidence interval [CI]: 1.171-2.104) and more worry about the child's health (OR = 2.350, 95% CI: 1.842-2.998) were more likely to experience elevated CES-D scores that put them at risk of depression. Also, mothers of rehospitalized infants had decreasing odds of elevated CES-D scores over time (OR = 0.982 per week, 95% CI: 0.968-0.996).
Findings have implications for the support of mothers during hospitalization and in the early years of parenting a preterm infant.
To study the prevalence of posttraumatic stress in parents after an acute admission to a paediatric intensive care unit (PICU) and to determine risk factors for the development of posttraumatic stress.
Parents completed posttraumatic stress questionnaires three months after their child's discharge. This questionnaire measures both symptoms of posttraumatic stress disorder (PTSD) and enables determination of the full psychiatric diagnosis of PTSD. Medical and demographic data concerning their child were gathered from physical evaluations three months after discharge. Of 250 eligible families, 144 (57.6%) participated in this study. The questionnaires were completed by 140 mothers and 107 fathers.
More than three-quarters of the parents experienced persistent symptoms of PTSD. In 21 mothers (15.0%) and 10 fathers (9.3%), the full psychiatric diagnosis of PTSD was determined. In six families, both parents had PTSD. Furthermore, a significant positive correlation was found between symptoms of PTSD of the mothers and the fathers. No obvious medical risk factors could be distinguished.
The unexpected admission of a child to a PICU is a stressful event associated with parental posttraumatic stress. Treatment should not end after discharge. Follow-up care is warranted and research should be focused on prevention of these symptoms.