Symptoms of post-traumatic stress disorder (PTSD) in next of kin during suspension of ICU visits during the COVID-19 pandemic: a prospective observational study.

BACKGROUND: During the COVID-19 pandemic, suspension of visits by next of kin to patients in intensive care units (ICU), to prevent spread of the SARS-CoV-2 virus, has been a common practice. This could impede established family-centered care and may affect the mental health of the next of kin. The aim of this study was to explore symptoms of post-traumatic stress syndrome (PTSD) in the next of kin of ICU patients. METHODS: In this prospective observational single-center study, next of kin of ICU patients were interviewed by telephone, using the Impact of Event Scale-Revised (IES-R), to assess symptoms of acute stress disorder during the ICU stay and PTSD symptoms at 3 months after the ICU stay. The primary outcome was the prevalence of severe PTSD symptoms (IES-R score ≥ 33) at 3 months. The secondary outcomes comprised the IES-R scores during the ICU stay, at 3 months, and the prevalence of severe symptoms of acute stress disorder during ICU stay. An inductive content analysis was performed of the next of kin's comments regarding satisfaction with patient care and the information they were given. RESULTS: Of the 411 ICU patients admitted during the study period, 62 patients were included together with their next of kin. An IES-R score > 33 was observed in 90.3% (56/62) of next of kin during the ICU stay and in 69.4% (43/62) 3 months later. The median IES-R score was 49 (IQR 40-61) during the ICU stay and 41 (IQR 30-55) at 3 months. The inductive content analysis showed that communication/information (55%), support (40%), distressing emotions (32%), and suspension of ICU visits (24%) were mentioned as relevant aspects by the next of kin. CONCLUSIONS: During the suspension of ICU visits in the COVID-19 pandemic, high prevalence and severity of both symptoms of acute stress disorder during the ICU stay and PTSD symptoms 3 months later were observed in the next of kin of ICU patients.

Aging and Postintensive Care Syndrome- Family: A Critical Need for Geriatric Psychiatry.

Postintensive care syndrome-family (PICS-F) describes the psychological symptoms that affect the family members of patients hospitalized in the intensive care unit (ICU) or recently discharged from the ICU. Geriatric psychiatrists should be concerned about PICS-F for several reasons. First, ICU hospitalization in older adults is associated with higher rates of cognitive and physical impairment compared with older adults hospitalized in non-ICU settings or dwelling in the community. This confers a special burden on the caregivers of these older ICU survivors compared with other geriatric populations. Second, as caregivers themselves age, caring for this unique burden can be more challenging compared with other geriatric populations. Third, evidence for models of care centered on patients with multimorbidity and their caregivers is limited. A deeper understanding of how to care for PICS and PICS-F may inform clinical practice for other geriatric populations with multimorbidity and their caregivers. Geriatric psychiatrists may play a key role in delivering coordinated care for PICS-F by facilitating timely diagnosis and interdisciplinary collaboration, advocating for the healthcare needs of family members suffering from PICS-F, and leading efforts within healthcare systems to increase awareness and treatment of PICS-F. This clinical review will appraise the current literature about the impact of critical illness on the family members of ICU survivors and identify crucial gaps in our knowledge about PICS-F among aging patients and caregivers.

Impact of post-traumatic stress symptoms on the health-related quality of life in a cohort study with chronically critically ill patients and their partners: age matters.

BACKGROUND: Survivors of an acute critical illness with continuing organ dysfunction and uncontrolled inflammatory responses are prone to become chronically critically ill. As mental sequelae, a post-traumatic stress disorder and an associated decrease in the health-related quality of life (QoL) may occur, not only in the patients but also in their partners. Currently, research on long-term mental distress in chronically critically ill patient-partner dyads, using appropriate dyadic analysis strategies (patients and partners being measured and linked on the same variables) and controlling for contextual factors, is lacking. METHODS: The present study investigates the interdependence of post-traumatic stress symptoms (PTSS) and the health-related QoL in n = 70 dyads of chronically critically ill patients and their partners, using the Actor-Partner-Interdependence Model (APIM) under consideration of contextual factors (age, gender, length of partnership). The Post-traumatic Stress Scale (PTSS-10) and Euro-Quality of Life (EQ-5D-3L) were applied in both the patients and their partners, within up to 6 months after the transfer from acute care ICU to post-acute ICU. RESULTS: Clinically relevant post-traumatic stress symptoms were reported by 17.1% of the patients and 18.6% of the partners. Both the chronically critically ill patients and their partners with more severe post-traumatic stress symptoms also showed a decreased health-related QoL. The latter was more pronounced in male partners compared to female partners or female patients. In younger partners (≤ 57 years), higher values of post-traumatic stress symptoms were associated with a decreased QoL in the patients. CONCLUSIONS: Mental health screening and psychotherapeutic treatment options should be offered to both the chronically critically ill patients and their partners. Future research is required to address the special needs of younger patient-partner dyads, following protracted ICU treatment. TRIAL REGISTRATION: German Clinical Trials Register No. DRKS00003386 . Registered 13 November 2011.

Post-intensive care syndrome symptoms and health-related quality of life in family decision-makers of critically ill patients.

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 resultsThis study describes a significant prevalence of PICS-F symptoms in FDMs with a diminished mental HRQOL.

Post intensive care syndrome: A review of clinical symptoms, evaluation, intervention.

Post intensive care syndrome (PICS) is a typical complication of critically ill patients during or after their stay in intensive care unit (ICU), characterized by a high incidence and impairment rate. It significantly impacts the quality of life of patients and their families, as well as consumes a substantial amount of medical resources. Therefore, early intervention and assessment of PICS is crucial. This paper aims to provide clinical professionals with a reference base by focusing on the clinical symptoms, diagnostic assessment, and preventative measures of PICS.

Translation and Adaptation of the Japanese Version of the Revised Parental Stressor Scale: Pediatric Intensive Care Unit.

Introduction The physical, cognitive, and psychiatric disorders that occur in patients after leaving the intensive care unit (ICU) are collectively called post-intensive care syndrome (PICS). Moreover, PICS-family (PICS-F) refers to the long-term psychological and social disorders that occur in the family. The symptoms of PICS-F can be psychological, and stress is a known cause of these symptoms. The Parental Stressor Scale: Pediatric Intensive Care Unit (PSS: PICU) was developed to assess stress levels and related factors among the families of patients admitted to the PICU. It has been translated into several languages and was revised in 2021. However, a Japanese version of the revised PSS: PICU (J-R-PSS: PICU) has not yet been developed. This study aimed to develop a J-R-PSS: PICU and to test its acceptability for clinical use. Materials and methods A back-translation method, involving initial translation, review by bilingual experts, and subsequent re-translation to ensure accuracy, was used to develop the J-R-PSS: PICU. Families with patients in the PICU for >48 hours between November and December 2021 and those who were transferred out of the ICU were recruited. Moreover, the study documents with a QR code for a web questionnaire were provided and explained to family members. Stress scores and stressors of family members were collected from web questionnaires using the PSS: PICU as the primary endpoint. Other information about the patients and their families was collected from clinical records and questionnaires. Participants and an expert panel evaluated the clarity of each item, and the expert panel evaluated the relevance of each item. Results Twenty family members who met the inclusion criteria and provided informed consent were included. The J-R-PSS: PICU was developed using a back-translation method. For clarity, all items were clarified after a single modification by an interdisciplinary team. For relevance, all the items had a content validity index at an item level of ≥0.8 and a scale level of 0.94. Alpha coefficients were 0.93 for the overall scale and 0.69-0.97 for its subscales. Conclusion We developed the J-R-PSS: PICU with high content validity and internal consistency using a back-translation method.

Symptoms of Anxiety, Depression, and Stress among Families of Critically Ill Patients with COVID-19: A Longitudinal Clinical Trial.

Rationale: Families of critically ill patients with coronavirus disease (COVID-19) may be at particularly high risk for anxiety, depression, and post-traumatic stress disorder after hospital discharge. Objectives: To assess symptoms of anxiety, depression, and stress among families of patients with COVID-19 during and after intensive care unit (ICU) admissions and to use qualitative methods to determine the sources of emotional distress. Methods: Families of patients with COVID-19 who participated in an ICU study were approached for participation in this post-hospital discharge study. Participants completed the Hospital Anxiety and Depression Scale (HADS) and the Impact of Events Scale-Revised (IES-R) at up to three points during the ICU stay and once after the ICU stay. Mixed-effects models were used to compare trajectories of HADS and IES-R scores over the ICU and post-ICU periods. Telephone interviews with participants were evaluated using thematic content analysis. Results: Among the 90 families that participated from September 2020 to April 2021, 47 respective patients were alive and 43 were deceased. Average HADS anxiety, HADS depression, and IES-R scores after hospital discharge were significantly higher (greater symptom burden) among families of deceased versus surviving patients: 9.2 (95% confidence interval [CI], 7.8-10.6) versus 6.3 (95% CI, 4.9-7.6) (P < 0.01), 7.1 (95% CI, 5.7-8.6) versus 3.2 (95% CI, 2.3-4.1) (P < 0.001), and 36.1 (95% CI, 31.0-41.2) versus 20.4 (95% CI, 16.1-24.8) (P < 0.001), respectively. HADS anxiety and HADS depression scores began to diverge during the ICU stay, whereas IES-R scores diverged after the stay for families of surviving versus deceased patients. Qualitative analysis confirmed a higher burden of psychological symptoms among families of deceased patients. Memories from the ICU stay became a focal point for participants who lost their loved ones, whereas families of surviving patients were able to look positively toward the future. In addition, families of deceased patients often viewed friends and family as sources of stress, whereas families of surviving patients typically viewed their community as a source of support. Conclusions: Patient death was associated with symptoms of anxiety, depression, and post-traumatic stress disorder among families of ICU patients with COVID-19. Psychological support interventions may be most beneficial for families of patients who died of COVID-19. Clinical trial registered with www.clinicaltrials.gov (NCT04501445).

Effect size estimates of risk factors for post-intensive care syndrome-family: A systematic review and meta-analysis.

BACKGROUND: Families of patients admitted to ICUs often experience post-intensive care syndrome-family, and previous studies have reported several possible risk factors. However, to date, no meta-analyses have been conducted on the numerous risk factors associated with the development of post-intensive care syndrome-family and how strongly these factors are in association with post-intensive care syndrome-family. OBJECTIVES: To identify risk factors for post-intensive care syndrome-family and determine the effect size of individual risk factors. METHODS: This systematic review used MEDLINE, CINAHL, PsycINFO, and EMBASE databases to search all studies through December 1, 2021, that reported risk factors for anxiety, depression, PTSD, and prolonged grief disorder in the families of adult patients in ICUs. A meta-analysis was conducted to calculate an overall estimate for key risk factors, and odds ratio and 95% confidence intervals were used as summary statistics using the random-effects model. RESULTS: Of 2964 identified studies, 17 were included. Nine factors for anxiety, eight for depression, and three for PTSD were assessed using results from 13 studies. The risk factor with the largest effect size was "history of mental illness," which, along with "female sex," was a significant risk factor common to anxiety, depression, and PTSD. "Poor communication with ICU staff," "severely ill patient," and "patients' spouse" were common risk factors for anxiety and depression. CONCLUSIONS: We identified several risk factors related to patient and family demographic characteristics. Further research is required to identify and validate modifiable risk factors for the psychosocial experiences of families of ICU patients.

Physical, social, mental and spiritual functioning of COVID-19 intensive care unit-survivors and their family members one year after intensive care unit-discharge: A prospective cohort study.

OBJECTIVE: To describe the long-term functioning of patients who survived a COVID-19-related admission to the intensive care unit and their family members, in the physical, social, mental and spiritual domain. DESIGN: A single-centre, prospective cohort study with a mixed-methods design. SETTING: The intensive care unit of the University Medical Center Groningen in the Netherlands. MAIN OUTCOME MEASURES: To study functioning 12 months after intensive care discharge several measurements were used, including a standardised list of physical problems, the Clinical Frailty Scale, the Medical Outcomes Study Short-Form General Health Survey, the McMaster Family Assessment Device, the Hospital Anxiety and Depression Scale, and the Spiritual Needs Questionnaire, as well as open questions and interviews with survivors and their family members. RESULTS: A total of 56 survivors (77%) returned the 12-month questionnaire, whose median age was 62 (inter-quartile range [IQR]: 55.0-68.0). Moreover, 67 family members (66%) returned the 12-month questionnaire, whose median age was 58 (IQR: 43-66). At least one physical problem was reported by 93% of the survivors, with 22% reporting changes in their work-status. Both survivors (84%) and their family members (85%) reported at least one spiritual need. The need to feel connected with family was the strongest. The main theme was 'returning to normal' in the interviews with survivors and 'if the patient is well, I am well' in the interviews with family members. CONCLUSIONS: One year after discharge, both COVID-19 intensive care survivors and their family members positively evaluate their health-status. Survivors experience physical impairments, and their family members' well-being is strongly impacted by the health of the survivor.

The Caregiver Pathway, a Model for the Systematic and Individualized Follow-up of Family Caregivers at Intensive Care Units: Development Study.

BACKGROUND: Family caregivers of patients who are critically ill have a high prevalence of short- and long-term symptoms, such as fatigue, anxiety, depression, symptoms of posttraumatic stress, and complicated grief. These adverse consequences following a loved one's admission to an intensive care unit (ICU) are also known as post-intensive care syndrome-family. Approaches such as family-centered care provide recommendations for improving the care of patients and families, but models for family caregiver follow-up are often lacking. OBJECTIVE: This study aims to develop a model for structuring and individualizing the follow-up of family caregivers of patients who are critically ill, starting from the patients' ICU admission to after their discharge or death. METHODS: The model was developed through a participatory co-design approach using a 2-phased iterative process. First, the preparation phase included a meeting with stakeholders (n=4) for organizational anchoring and planning, a literature search, and interviews with former family caregivers (n=8). In the subsequent development phase, the model was iteratively created through workshops with stakeholders (n=10) and user testing with former family caregivers (n=4) and experienced ICU nurses (n=11). RESULTS: The interviews revealed how being present with the patient and receiving adequate information and emotional care were highly important for family caregivers at an ICU. The literature search underlined the overwhelming and uncertain situation for the family caregivers and identified recommendations for follow-up. On the basis of these recommendations and findings from the interviews, workshops, and user testing, The Caregiver Pathway model was developed, encompassing 4 steps: within the first few days of the patient's ICU stay, the family caregivers will be offered to complete a digital assessment tool mapping their needs and challenges, followed by a conversation with an ICU nurse; when the patient leaves the ICU, a card containing information and support will be handed out to the family caregivers; shortly after the ICU stay, family caregivers will be offered a discharge conversation by phone, focusing on how they are doing and whether they have any questions or concerns; and within 3 months after the ICU stay, an individual follow-up conversation will be offered. Family caregivers will be invited to talk about memories from the ICU and reflect upon the ICU stay, and they will also be able to talk about their current situation and receive information about relevant support. CONCLUSIONS: This study illustrates how existing evidence and stakeholder input can be combined to create a model for family caregiver follow-up at an ICU. The Caregiver Pathway can help ICU nurses improve family caregiver follow-up and aid in promoting family-centered care, potentially also being transferrable to other types of family caregiver follow-up.

Coping strategies, anxiety and depressive symptoms in family members of patients treated with extracorporeal membrane oxygenation: A prospective cohort study.

BACKGROUND: Family members of patients treated with Extracorporeal Membrane Oxygenation (ECMO) during an Intensive Care Unit (ICU) stay are at risk of developing symptoms of anxiety, depression and Post-Traumatic Stress Disorder (PTSD). Coping strategies used by family members may play an important role in the severity of some of these symptoms. OBJECTIVES: The primary aim of this study was to describe coping strategies used by family members of ECMO-treated patients during ICU admission and recovery period. The secondary aim was to explore the course of the symptoms anxiety, depression, PTSD, and Health Related Quality Of Life (HRQOL) over time. METHODS: In this single-center prospective longitudinal study, validated questionnaires were used to measure coping strategies, symptoms of anxiety, depression and PTSD, and HRQOL in family members of ECMO-treated patients directly after the start of ECMO and at one and six months after the start of ECMO. RESULTS: Family members (n = 26) mainly used problem-focused coping strategies. Symptoms of anxiety appeared to be most present during treatment but decreased over time, as did symptoms of depression and PTSD. HRQOL was severely affected, especially in the mental domain, and did not improve over time. CONCLUSION: In family members of ECMO-treated patients, problem-focused coping mechanisms were most prominent. Psychological functioning was impaired on admission but improved over time, although a mild reaction to stress remained.

Improving Post-Injury Care: Key Family Caregiver Perspectives of Critical Illness After Injury.

There is little research about how caregiver experiences evolve from ICU admission to patient recovery, especially among caregivers for patients who have traumatic injuries. In this study, we characterize diverse caregiver experiences during and after ICU admission for injury. METHODS: This prospective observational study is based in a level 1 trauma center in Philadelphia, Pennsylvania. Longitudinal interviews among caregivers of patients who required ICU admission for traumatic injury were conducted from the time of ICU admission to 12 months after hospital discharge. Transcripts were analyzed using a qualitative descriptive approach. RESULTS: Sixty-five interviews were conducted with 19 caregivers. The interview results converged on four areas: experiences in the ICU, the aftermath of violent traumatic injury, caregiver responsibilities, and care in the context of the wider family. In the ICU, caregivers contended with worry and uncertainty, and they often hid these feelings. Many felt that they always needed to be at the bedside, leading to stress and exhaustion. Caregivers had difficulty communicating with their loved ones, and communication itself sometimes became a source of conflict. Over time, caregivers were burdened by many managerial responsibilities. In addition, violent traumatic injury caused an overlay of concern for patients' safety. The need to plan for recovery caused caregivers to make substantial sacrifices. As a result of these difficult experiences, some caregivers and patients drew closer together, while others were divided by conflict. CONCLUSIONS: Illness after traumatic injury may be devastating for caregivers, disrupting emotional wellbeing and other aspects of life. Caregivers are variably prepared for the challenges of ICU care and caregiving through convalescence and require robust support during and after ICU admission to enable effective communication, resource access, and an ongoing relationship with the healthcare team.

Association between intensive care unit admission of a patient and mental disorders in the spouse: a retrospective matched-pair cohort study.

BACKGROUND: Previous prospective studies have suggested that spouses of patients who are admitted to the intensive care unit (ICU) have a high prevalence of mental disorders, termed post-intensive care syndrome-family (PICS-F). However, it remains unclear whether the patient's ICU admission is associated with the occurrence of mental disorders in the spouse outside of the prospective study setting. We therefore investigated the proportion of ICU patients' spouses who visited medical facilities for mental disorders and the association between ICU admission of a patient and mental disorders in the spouse using real-world data. METHODS: This was a retrospective matched-pair cohort study using commercially available, routinely collected administrative claims data. As the study population, we identified all married couples (both wife and husband) who were registered in the database from 1 April 2012 to 31 August 2018 using family identification codes. We identified spouses of patients who were admitted to the ICU for more than 2 days as the exposure group and defined the date of admission to the ICU as the index date. We randomly matched four individuals in the non-exposure group with one individual in the exposure group. The primary outcome was any PICS-F-related mental disorder in the spouses within 6 months from the index date. As a sensitivity analysis, we also investigated the proportion and association of individuals (excluding spouses) with a history of mental disorders. RESULTS: Among 1,082,208 married couples, we identified 8490 spouses of ICU patients, and they were matched with 33,946 individuals. The proportion of any PICS-F-related mental disorder within 6 months from the index date was 12.8% in ICU patients' spouses and 11.3% in the matched individuals (adjusted odds ratio, 1.29; 95% confidence interval, 1.03-1.42). The sensitivity analysis showed significant associations between ICU admission and spouses' mental disorders. CONCLUSIONS: Spouses of patients who were admitted to the ICU had a slightly higher risk of mental disorders within 6 months than spouses of patients who were not admitted to the ICU.

Dyadic post-traumatic stress after intensive care: Case report of a sepsis patient and his wife.

INTRODUCTION: Following intensive care treatment, patients and thier spouse often report traumatic memories that are frequently associated with post-traumatic stress symptoms. In this case report, we describe the case of a sepsis survivor and his wife who both suffered concurrently from intensive care associated post-traumatic stress symptoms as long-term sequelae. Both were treated with internet-based cognitive-behaviuoral writing therapy (iCBT) for post-traumatic stress disorder (PTSD) after intensive care. METHODS: Traumatic memories recalled during exposure in sensu as part of iCBT are described. Outcome data measured before, during and after psychotherapeutic treatment were analyzed. FINDINGS: Both, the patient and his wife showed characteristic symptoms of PTSD three years after discharge from the intensive care unit (ICU) comprising of intrusions, negative emotions, and hyperarousal. They reported unpleasant ICU memories from a patient's and relative's perspective, respectively. In both, the patient and his wife, a decline of symptoms with respect to all outcome measures during the course of iCBT from pre-treatment to three-month follow-up was observed. CONCLUSION: Experiences of critical illness and intensive care can lead to post-traumatic stress in patients and their partners. Hence, it may be useful to offer mental health screening and psychotherapeutic treatment options to both ICU patients and their partners.

Impact of Patient and Family Involvement in Long-Term Outcomes.

Surviving a critical illness can have long-term effects on both patients and families. These effects can be physical, emotional, cognitive, and social, and they affect both the patient and the family. Family members play a key role in helping their loved one recover, and this recovery process can take considerable time. Transferring out of an intensive care unit, and discharging home from a hospital, are important milestones, but they represent only the beginning of recovery and healing after a critical illness. Recognizing that these challenges exist both for patients and families is important to improve critical illness outcomes.

Measuring Outcomes of an Intensive Care Unit Family Diary Program.

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.

O impacto do uso de diários hospitalares na incidência de Transtorno de Estresse Pós-Traumático e de sofrimento psíquico em familiares de crianças gravemente doentes: um estudo de intervenção em Unidades de Terapia Intensiva Pediátricas no Rio de Janeiro / The impact of hospital diaries in Postraumatic Stress Disorder and psychological distress incidence in relatives of critically ill children: an intervention study in Pediatric Intensive Care Units in Rio de Janeiro

Mais de um terço dos familiares de pacientes internados em Unidades de Terapia Intensiva Pediátricas (UTIP) evoluem com ansiedade, depressão e Transtorno de Estresse Pós- Traumático (TEPT), com consequente diminuição da qualidade de vida e grande impacto social. A estas complicações, alcunhou-se o termo Síndrome Pós-Terapia Intensiva Familiar (PICS- F), com o objetivo de aumentar a conscientização sobre o assunto visto que os dados disponíveis na literatura são ainda escassos e de baixa qualidade. Estratégias que minimizem estes desfechos negativos após a alta vêm sendo adotadas em UTIP de diferentes países. O objetivo desta tese foi avaliar o impacto de um programa de diários hospitalares na incidência de TEPT e de sofrimento psíquico em familiares de pacientes pediátricos criticamente doentes. Entre dezembro de 2019 e dezembro de 2021, realizamos um estudo de intervenção randomizado por clusters e alocado em crossover, com dois braços e dois períodos em quatro UTIP do estado do Rio de Janeiro. Foram elegíveis os familiares de crianças de 29 dias a 12 anos que estiveram internadas na UTIP por mais de 36 horas por motivos clínicos ou cirúrgicos. O uso de diários de UTIP foi comparado com a prática padrão. Os diários foram preenchidos pela equipe de saúde e familiares, tiveram fotografias inseridas e foram entregues aos familiares na alta da UTIP. Os desfechos primários foram: (a) a incidência de TEPT aferida com o instrumento PCL- 5 (Posttraumatic Stress Disorder Checklist for DSM-5 - Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition); e (b) a incidência de sofrimento psíquico aferida com o instrumento Hospital Anxiety and Depression Score (HADS). Ambos os desfechos foram aferidos em familiares de crianças graves, 45 a 60 dias após sua alta da UTIP. Também foi realizada uma análise de sensibilidade para avaliar o impacto de níveis diferentes de adesão ao diário nos desfechos. Um total de 339 participantes foi analisado, 170 no grupo que fez uso do diário e 169 no grupo controle. As características dos participantes foram semelhantes nos dois grupos de estudo. O uso de diários diminuiu em média 2,57 pontos no escore total do PCL 5 dos familiares (IC 95% -2,58 a -2,57; p<0,001) e foi encontrada razão de taxa de incidência (IRR) de 0,60 (IC 95% 0,57 a 0,64; p<0,001), significando uma redução de 40% na incidência de TEPT no grupo intervenção quando comparado ao controle. Com relação ao sofrimento psíquico, o uso de diários resultou em um IRR de 0,78 (IC 95% 0,77 a 0,78). A análise de conteúdo dos diários mostrou que a adesão total foi ainda mais impactante do que a adesão parcial aos diários. Os resultados apresentados nesta tese corroboram a hipótese de que diários têm efeito protetor sobre a incidência de TEPT e de sofrimento psíquico em familiares de crianças criticamente doentes, sendo, portanto, benéficos na prevenção de PICS-F.

More than a third of family members of critically ill children in Pediatric Intensive Care Units (PICU) develop anxiety, depression, and Post Traumatic Stress Disorder (PTSD), with a consequent decrease in quality of life and great social impact. Hence, the term Post- Intensive Family Therapy Syndrome (PICS-F) was created to raise awareness of these complications and define a global research agenda. Data on this theme available in the literature are still scarce and of low quality. After discharge, strategies that minimize these negative outcomes have been adopted in PICUs in different countries. This thesis aimed to evaluate the impact of a hospital diary program on PTSD and psychological distress incidence in family members of critically ill pediatric patients. Between December 2019 and December 2021, we conducted a cluster-randomized, crossover, two-arm, two-period intervention study in four PICUs. Relatives of children aged 29 days to 12 years who were hospitalized in the PICU for more than 36 hours for clinical or surgical reasons were eligible. The use of PICU diaries was compared with standard practice. The diaries were filled in by the health professionals and family members, had photographs inserted, and were handed to family members upon PICU discharge. The primary outcomes were: (a) the incidence of PTSD measured with the PCL-5 instrument (Posttraumatic Stress Disorder Checklist for DSM-5 - Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition); and (b) the incidence of psychological distress measured with the Hospital Anxiety and Depression Score (HADS) instrument. Both outcomes were measured in family members of critically ill children 45 to 60 days after discharge from the PICU. A sensitivity analysis was also performed on adherence to the diary by evaluating its content. A total of 339 participants were analyzed, 170 in the diary group and 169 in the control group. Participant characteristics were similar in the two study groups. The use of diaries decreased an average of 2.57 points in the total PCL-5 score of family members (95% CI -2.58 to -2.57; p<0.001) and an incidence rate ratio (IRR) of 0.60 (95% CI 0.57 to 0.64; p< 0.001), resulting in a 40% reduction in PTSD incidence. Regarding psychological distress, the use of diaries resulted in an IRR of 0.78 (95% CI 0.77 to 0.78). The content analysis of the diaries showed that full adherence was even more impactful than partial adherence to the diaries (IRR 0.68 [CI 95% 0.57 to 0.81] and IRR 0.77 [CI 95% 0. 70 to 0.86], respectively). Therefore, the more complete the diaries, the greater their effect on reducing psychological distress incidence. The results presented in this thesis support the hypothesis that diaries have a protective effect on PTSD and psychological distress in family members of critically ill children and are beneficial in preventing PICS-F.