scholarly journals Caregiver Burden and Emotional Wellbeing in Informal Caregivers to ICU Survivors: A Prospective Cohort Study

Author(s):  
Anna Milton ◽  
Anna Schandl ◽  
Ing-Marie Larsson ◽  
Ewa Wallin ◽  
Johanna Savilampi ◽  
...  

Abstract BackgroundInformal caregivers to intensive care unit (ICU) survivors may develop post-intensive care syndrome family (PICS-F), including psychological problems such as depression, anxiety and post-traumatic stress (PTS). Our primary aim was to investigate associations between caregiver burden in informal caregivers cohabiting with ICU survivors and patients’ physical and psychological outcomes.MethodsWe conducted a prospective, multicentre cohort study in four ICUs in Sweden. Adults cohabiting with ICU patients included in a previous study were eligible for inclusion. Three months post-ICU, informal caregivers received questionnaires assessing perceived caregiver burden, health-related quality of life (HRQL) and symptoms of depression, anxiety and PTS. In parallel, patients reported their physical and psychological status via validated questionnaires. The primary outcome was to compare caregiver burden in informal caregivers to patients with and without adverse physical and psychological outcomes three months post-ICU. Secondary outcomes were correlations between caregiver burden and informal caregivers’ psychological status and mental HRQL.ResultsAmong 62 included informal caregivers, 55 (89%) responded to the follow-up questionnaires. Caregiver burden was higher in informal caregivers to patients with an adverse psychological or physical outcome, compared to informal caregivers to patients without an adverse outcome, caregiver burden scale score mean (±standard deviation) 52 (11) and 41 (13) respectively (p=0.003). There was strong negative correlation between caregiver burden and informal caregivers’ mental HRQL (rs -0.74, p<0.001). ConclusionInformal caregivers to ICU survivors with an adverse physical or psychological outcome experience a higher caregiver burden. A higher caregiver burden correlates with worse caregiver mental HRQL. ICU follow-up programs should consider screening and follow-up of informal caregivers for mental health problems.Trial registrationThe study was registered at clinicaltrials.gov, NCT02712541 on March 18 2016.

BMJ Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. e023310
Author(s):  
Sumeet Rai ◽  
Rhonda Brown ◽  
Frank van Haren ◽  
Teresa Neeman ◽  
Arvind Rajamani ◽  
...  

IntroductionThere are little published data on the long-term psychological outcomes in intensive care unit (ICU) survivors and their family members in Australian ICUs. In addition, there is scant literature evaluating the effects of psychological morbidity in intensive care survivors on their family members. The aims of this study are to describe and compare the long-term psychological outcomes of intubated and non-intubated ICU survivors and their family members in an Australian ICU setting.Methods and analysisThis will be a prospective observational cohort study across four ICUs in Australia. The study aims to recruit 150 (75 intubated and 75 non-intubated) adult ICU survivors and 150 family members of the survivors from 2015 to 2018. Long-term psychological outcomes and effects on health-related quality of life (HRQoL) will be evaluated at 3 and 12 months follow-up using validated and published screening tools. The primary objective is to compare the prevalence of affective symptoms in intubated and non-intubated survivors of intensive care and their families and its effects on HRQoL. The secondary objective is to explore dyadic relations of psychological outcomes in patients and their family members.Ethics and disseminationThe study has been approved by the relevant human research ethics committees (HREC) of Australian Capital Territory (ACT) Health (ETH.11.14.315), New South Wales (HREC/16/HNE/64), South Australia (HREC/15/RAH/346). The results of this study will be published in a peer-reviewed medical journal and presented to the local intensive care community and other stakeholders.Trial registration numberACTRN12615000880549; Pre-results.


2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Anne-Françoise Rousseau ◽  
Pauline Minguet ◽  
Camille Colson ◽  
Isabelle Kellens ◽  
Sourour Chaabane ◽  
...  

Abstract Purpose Many patients with coronavirus disease 2019 (COVID-19) required critical care. Mid-term outcomes of the survivors need to be assessed. The objective of this single-center cohort study was to describe their physical, cognitive, psychological, and biological outcomes at 3 months following intensive care unit (ICU)-discharge (M3). Patients and methods All COVID-19 adults who survived an ICU stay ≥ 7 days and attended the M3 consultation at our multidisciplinary follow-up clinic were involved. They benefited from a standardized assessment, addressing health-related quality of life (EQ-5D-3L), sleep disorders (PSQI), and the three principal components of post-intensive care syndrome (PICS): physical status (Barthel index, handgrip and quadriceps strength), mental health disorders (HADS and IES-R), and cognitive impairment (MoCA). Biological parameters referred to C-reactive protein and creatinine. Results Among the 92 patients admitted to our ICU for COVID-19, 42 survived a prolonged ICU stay and 32 (80%) attended the M3 follow-up visit. Their median age was 62 [49–68] years, 72% were male, and nearly half received inpatient rehabilitation following ICU discharge. At M3, 87.5% (28/32) had not regained their baseline level of daily activities. Only 6.2% (2/32) fully recovered, and had normal scores for the three MoCA, IES-R and Barthel scores. The main observed disorders were PSQI > 5 (75%, 24/32), MoCA < 26 (44%, 14/32), Barthel < 100 (31%, 10/32) and IES-R ≥ 33 (28%, 9/32). Combined disorders were observed in 13/32 (40.6%) of the patients. The EQ-5D-3L visual scale was rated at 71 [61–80]. A quarter of patients (8/32) demonstrated a persistent inflammation based on CRP blood level (9.3 [6.8–17.7] mg/L). Conclusion The burden of severe COVID-19 and prolonged ICU stay was considerable in the present cohort after 3 months, affecting both functional status and biological parameters. These data are an argument on the need for closed follow-up for critically ill COVID-19 survivors.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Stephana J. Moss ◽  
Krista Wollny ◽  
Therese G. Poulin ◽  
Deborah J. Cook ◽  
Henry T. Stelfox ◽  
...  

Abstract Background Informal caregivers of critically ill patients in intensive care unit (ICUs) experience negative psychological sequelae that worsen after death. We synthesized outcomes reported from ICU bereavement interventions intended to improve informal caregivers’ ability to cope with grief. Data sources MEDLINE, EMBASE, CINAHL and PsycINFO from inception to October 2020. Study selection Randomized controlled trials (RCTs) of bereavement interventions to support informal caregivers of adult patients who died in ICU. Data extraction Two reviewers independently extracted data in duplicate. Narrative synthesis was conducted. Data synthesis Bereavement interventions were categorized according to the UK National Institute for Health and Clinical Excellence three-tiered model of bereavement support according to the level of need: (1) Universal information provided to all those bereaved; (2) Selected or targeted non-specialist support provided to those who are at-risk of developing complex needs; and/or (3) Professional specialist interventions provided to those with a high level of complex needs. Outcome measures were synthesized according to core outcomes established for evaluating bereavement support for adults who have lost other adults to illness. Results Three studies of ICU bereavement interventions from 31 ICUs across 26 hospitals were included. One trial examining the effect of family presence at brain death assessment integrated all three categories of support but did not report significant improvement in emotional or psychological distress. Two other trials assessed a condolence letter intervention, which did not decrease grief symptoms and may have increased symptoms of depression and post-traumatic stress disorder, and a storytelling intervention that found no significant improvements in anxiety, depression, post-traumatic stress, or complicated grief. Four of nine core bereavement outcomes were not assessed anytime in follow-up. Conclusions Currently available trial evidence is sparse and does not support the use of bereavement interventions for informal caregivers of critically ill patients who die in the ICU.


2017 ◽  
Vol 29 (6) ◽  
pp. 991-1004 ◽  
Author(s):  
Franziska Laporte Uribe ◽  
Johannes Gräske ◽  
Susann Grill ◽  
Steffen Heinrich ◽  
Susanne Schäfer-Walkmann ◽  
...  

ABSTRACTBackground:Recently, regional dementia care networks (DCNs) have been established in Germany to provide timely support for persons with dementia (PwDs) and their families. There is a lack of research in this setting. This study was conducted to describe the burden experienced by informal caregivers over the course of one year when utilizing a DCN and the factors affecting potential changes in caregiver burden during that time.Methods:The study was part of the DemNet-D project, a multi-center observational study of DCNs in Germany. Standardized questionnaires were administered during face-to-face interviews at baseline and at a one-year follow-up with PwDs and their informal caregivers who used a DCN. Based on qualitative data, four DCN governance types were identified and used in a multivariate analysis of burden categories.Results:A total of 389 PwD-informal caregiver dyads completed the follow-up assessment. At follow-up, the dyads reported significantly lower scores for burden in relation to practical care tasks, conflicts of need, and role conflicts. This change was associated with the PwD–caregiver relationship, the caregiver's gender and health status, and the PwD's socio-economic status. The governance structure of the DCNs was associated with change in one of the four burden categories.Conclusions:Our data provide the first indications that different governance structures of DCNs seem to be similarly well suited to support network users and might contribute to reducing caregiver burden. However, further studies set in DCNs examining factors that mediate changes in burden are needed to draw strong conclusions regarding the effectiveness of DCNs. Gender differences and the PwD–caregiver relationship should be considered by DCN stakeholders when developing support structures.


2020 ◽  
Vol 8 (3) ◽  
Author(s):  
George Zisopoulos ◽  
Pagona Roussi ◽  
Eleni Mouloudi

Several studies have linked treatment in the Intensive Care Unit (ICU) with negative psychological outcomes. This study explores the prevalence of negative psychological outcomes in Greek patients (N=29), a year after treatment in ICU. Percentages of participants with anxiety [41%, 95% CI (22%, 60%)] and Post- Traumatic Stress Disorder (PTSD) [34%, 95% CI (16%, 53%)] symptoms were similar to the related literature. Percentages of participants with depressive [17%, 95% CI (3%, 32%)] symptoms were rather low. Only 10% of participants reported absence of quality of live issues. Anxiety symptoms were related to desire to talk about the ICU experience (p=0.010), duration of propofol administration (p=0.018) and loss of employment (p=0.019) and negatively related to duration of stay in the ICU (p=0.025). PTSD symptoms were related to experiencing other stressors during the year after the ICU stay (p=0.001), social constraint (p=0.003), duration of propofol administration (p=0.004), loss of employment (p=0.020), low income (p=0.022) and negative ICU memories (p=0.029). Depressive symptoms were related to loss of employment (p=0.003), low income (p=0.029) and social constraint (p=0.033). Patients experience elevated levels of psychological symptoms long after they are discharged from the hospital. Several psychosocial factors emerged as important factors to consider for predicting levels of distress.


2021 ◽  
Author(s):  
Nadine Van Veenendaal ◽  
Ingeborg Van der Meulen ◽  
Marisa Onrust ◽  
Wolter Paans ◽  
Willem Dieperink ◽  
...  

Abstract BACKGROUNDThe COVID-19 pandemic causes high rates of intensive care unit (ICU) admissions. After ICU-discharge patients and family members can suffer from persisting impairments known as ‘Post Intensive Care Syndrome’ (PICS) and PICS-family. Since COVID-19 is relatively new, there is barely any knowledge on the long-term outcomes of COVID-19 ICU-survivors and their family members.OBJECTIVESThis study aims to gain insight in the long-term physical, social and psychological functioning of COVID-19 ICU-survivors and their family members at three- and six-months following ICU discharge.METHODSA single-center, prospective cohort study was conducted in COVID-19 ICU-survivors and their family members. Enrolled participants received questionnaires at three and six months after ICU discharge. The MOS Short-Form General Health Survey, Clinical Frailty Scale, spirometry tests, McMaster Family Assessment Device (FAD-GF6+), the Hospital Anxiety and Depression Scale and return to work were used to evaluate physical, social and psychological functioning.RESULTSSixty COVID-19 ICU-survivors and 78 family members participated. Physical functioning was impaired in ICU-survivors as reflected by a score of 33.3 (IQR 16.7-66.7) and 50 (IQR 16.7-83.3) on the physical functioning subscale at 3- and 6-months follow-up respectively. Diffusion lung capacity was reduced in 69% of patients. Ninety percent of the ICU-survivors reported persistent symptoms after 6 months. Social functioning was impaired as 90% of the COVID-19 ICU-survivors did not reach their pre-ICU employment level, 6 months after ICU-discharge. Psychological functioning in ICU-survivors was normal. Family members experienced worse employment status in 35% and 34% including a decrease in employment rate of 18.3% and 7.4% at 3- and 6-months post ICU-discharge, respectively. Psychologically, 63% of the family members reported ongoing impaired well-being due to the COVID-19 related mandatory physical distance to their relatives.CONCLUSIONWe have shown that COVID-19 ICU-survivors suffer from a prolonged burden of disease, prominent in physical- and social functioning, worse employment status and persisting symptoms in 90%. In addition, family members also report long term effects expressed by a reduction in return to work and impaired well-being. Further research needs to extend the follow up and to study the effects of standardized rehabilitation in COVID-19 patients and their family members.


BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e046454
Author(s):  
Elisabeth Marie Strømme ◽  
Jannicke Igland ◽  
Jasmin Haj-Younes ◽  
Bernadette Nirmal Kumar ◽  
Lars T Fadnes ◽  
...  

ObjectivesThis study aims to examine associations, predictors and pharmacological treatment of chronic pain and mental health problems among Syrian refugees in a longitudinal perspective.DesignProspective cohort study.SettingWe collected survey data among Syrian refugees in Lebanon granted resettlement to Norway (self-administered questionnaires) and at follow-up 1 year after arrival in Norway (structured telephone interviews).ParticipantsAdult Syrian refugees attending mandatory pretravel courses in Lebanon in 2017–2018 were invited to participate. In total, 353 individuals participated at both time points.Primary and secondary outcomesWe examined the cross-sectional associations between pain, mental health and migration-related exposures at baseline and follow-up and assessed whether associations changed significantly with time. Furthermore, we investigated the longitudinal association between mental health at baseline and pain at follow-up. We also evaluated temporal changes in use of analgesics and psychotropic drugs.ResultsWhile most refugees reported improved health from the transit phase in Lebanon to the early resettlement phase in Norway, a few had persisting and intertwined health problems. Most migration-related stressors were more closely associated with chronic pain and mental health problems after resettlement as compared with the transit phase. In parallel, poor mental health was associated with chronic pain in the follow-up (adjusted risk ratio (ARR) 1.5 (1.0, 2.2)), but not at baseline (ARR 1.1 (0.8, 1.5)). Poor mental health at baseline was a statistically significant predictor of chronic pain at follow-up among those not reporting chronic pain at baseline. At both timepoints, one in four of those with chronic pain used analgesics regularly. None with mental health problems used antidepressants daily.ConclusionsProviders of healthcare services to refugees should be attentive to the adverse effect of postmigration stressors and acknowledge the interrelations between pain and mental health. Possible gaps in pharmacological treatment of pain and mental health problems need further clarification.


2020 ◽  
Author(s):  
Nahom Worku Teshager ◽  
Ashenafi Tazebew Amare ◽  
koku Tamirat

Abstract Background Pediatric intensive care unit (PICU) tremendously improves the success of saving patients having potentially life-threatening illness. An accurate estimate of lives saved through pediatric critical care intervention is important to evaluate the quality of the health care system. Data on pediatric critical care in developing countries remain scarce yet is much needed to improve clinical practices and outcomes. This study aimed to determine the incidence and predictors of mortality in the pediatric intensive care unit in the study setting.Method An institution based prospective cohort study was conducted from February 2018 to July 2019. We collected data by interview, chart and registration book review. Life table was used to estimate the cumulative survival of patients and Log rank test was used to compare survival curves between different categories of the explanatory variables. Survival trend over the follow up time was described using the Kaplan Meier graph. Bivariate and multivariate Cox proportional hazard model were used to identify predictors.Result Based on the 10 th version of international classifications of disease (ICD) of WHO, neurologic disorders (22.7%) infectious disease (18.8%) and environmental hazards (11.8%) account for the top three diagnoses. The median observation time was 3 days with IQR of 1 to 6 days. Of the total of 313 participants, 102 (32.6%) died during the follow-up time. This gives the incidence of mortality of 6.9 deaths per 100 person day observation. Caregivers’ occupation of government-employed (AHR=0.35, 95%CI: 0.14, 0.89), weekend admission (AHR=1.63, 95%CI: 1.02, 2.62), critical illness (AHR=1.79, 95%CI: 1.13, 2.85) Mechanical ventilation AHR=2.36,95%CI: 1.39, 4.01)and PIM2 score (AHR=1.53, 95%CI: 1.36, 1.72) were predictors of mortality in the pediatric ICU.Conclusion Neurologic disorder was the leading causes of admission followed by infectious diseases, and environmental hazards. Rate of mortality was high and admission over weekends, caregivers' occupation, mechanical ventilation, critical illness diagnosis, and higher PIM2 scores were found to be significant and independent predictors of mortality at the PICU. This suggests that ICU medical equipment, diagnostics, and interventions should be available up to the standard. Intensivist and full staffing around the clock has to be available in the PICU.


2013 ◽  
Vol 43 (12) ◽  
pp. 2657-2671 ◽  
Author(s):  
O. J. Bienvenu ◽  
J. Gellar ◽  
B. M. Althouse ◽  
E. Colantuoni ◽  
T. Sricharoenchai ◽  
...  

BackgroundSurvivors of critical illnesses often have clinically significant post-traumatic stress disorder (PTSD) symptoms. This study describes the 2-year prevalence and duration of PTSD symptoms after acute lung injury (ALI), and examines patient baseline and critical illness/intensive care-related risk factors.MethodThis prospective, longitudinal cohort study recruited patients from 13 intensive care units (ICUs) in four hospitals, with follow-up 3, 6, 12 and 24 months after ALI onset. The outcome of interest was an Impact of Events Scale – Revised (IES-R) mean score ⩾1.6 (‘PTSD symptoms’).ResultsDuring the 2-year follow-up, 66/186 patients (35%) had PTSD symptoms, with the greatest prevalence by the 3-month follow-up. Fifty-six patients with post-ALI PTSD symptoms survived to the 24-month follow-up, and 35 (62%) of these had PTSD symptoms at the 24-month follow-up; 50% had taken psychiatric medications and 40% had seen a psychiatrist since hospital discharge. Risk/protective factors for PTSD symptoms were pre-ALI depression [hazard odds ratio (OR) 1.96, 95% confidence interval (CI) 1.06–3.64], ICU length of stay (for a doubling of days, OR 1.39, 95% CI 1.06–1.83), proportion of ICU days with sepsis (per decile, OR 1.08, 95% CI 1.00–1.16), high ICU opiate doses (mean morphine equivalent ⩾100 mg/day, OR 2.13, 95% CI 1.02–4.42) and proportion of ICU days on opiates (per decile, OR 0.83, 95% CI 0.74–0.94) or corticosteroids (per decile, OR 0.91, 95% CI 0.84–0.99).ConclusionsPTSD symptoms are common, long-lasting and associated with psychiatric treatment during the first 2 years after ALI. Risk factors include pre-ALI depression, durations of stay and sepsis in the ICU, and administration of high-dose opiates in the ICU. Protective factors include durations of opiate and corticosteroid administration in the ICU.


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