End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives.

BACKGROUND: Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families. METHODS: A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life. RESULTS: Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to "live for the day" due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in 'selective decision-making' related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make 'timely decisions' as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often 'defaulted' to others, especially once capacity was lost. 'Proactive decisions', including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options. CONCLUSIONS: The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

Psychometric Evaluation of the Family Willingness for Caregiving Scale.

BACKGROUND: Family members and close friends of patients undergoing mechanical ventilation in the intensive care unit (ICU) often experience stress and a sense of helplessness. Participating in the care of their loved one may improve their adaptation to the ICU environment and better prepare them for caregiving after discharge. OBJECTIVES: The primary aim of this study was to develop the Family Willingness for Caregiving Scale (FWCS) and test its psychometric properties. The secondary aim was to examine relationships between family members' demographic characteristics and caregiving willingness. METHODS: The process of scale development followed DeVellis's 8-step method, and the scale was tested in 3 phases. The first 2 phases examined content validity and face validity, respectively. In phase 3, the FWCS was administered to a sample of family members currently visiting an ICU patient. RESULTS: Content validity and face validity were confirmed. The internal consistency reliability of the scale was acceptable, and exploratory factor analysis revealed a 1-factor structure comprising both physical and emotional/supportive care tasks. Caregiving willingness differed significantly by sex, with women reporting greater willingness than men reported. CONCLUSIONS: Further testing of the FWCS is needed. After refinement, the FWCS could be used to evaluate factors contributing to caregiving willingness of family members of ICU patients and advance the science related to family engagement in the ICU. Additionally, it could be used as a practical tool to suggest family caregiving activities in the ICU.

Using Qualitative Synthesis to Explore Heterogeneity of Randomized Trials on ICU Diaries.

OBJECTIVE: We aimed to identify which set of components differentiates the ICU diaries that were effective in reducing psychologic symptoms after critical illness. DATA SOURCES: We searched the online databases MEDLINE, OVID, Embase, and EBSCOhost from inception to December 2021. STUDY SELECTION: Randomized controlled trials (RCTs) of the ICU diary were included, irrespective of the language, with samples of adult patients (≥ 18 yr old) and/or their relatives hospitalized in an ICU for more than 24 hours. Two qualitative syntheses on patients' and healthcare providers' perceptions on the ICU diary were included. DATA EXTRACTION: Four findings were extracted from the qualitative synthesis of patients' perspectives on the ICU diary. From the RCTs, we extracted the components of the ICU diary and whether the patients were ventilated for at least 3 days. We reported the outcome as effective or not, regardless of the psychiatric symptoms and diagnostic tools used for evaluation. We built a matrix in which each column represented a recommendation for an intervention component derived from the qualitative review, and each row represented whether the components of an individual trial's intervention matched any of the recommendations. DATA SYNTHESIS: Eight RCTs were included in the final analysis. The sample of five studies consisted of patients under mechanical ventilation (MV) for at least 3 days. Two were positive trials. Three RCTs included family members, and two of those were positive trials. CONCLUSIONS: For patients under MV for at least 3 days, the ICU diaries that were effective in preventing psychiatric symptoms after critical illness were written by the ICU staff, delivered after hospital discharge, and read with a healthcare professional in order to better understand the diary and the ICU stay. For family members, the presence of photographs was the only characteristic identified a successful ICU diary.

Being tied down-The experience of being physically restrained while mechanically ventilated in ICU.

AIMS: To explore the experience of physical restraints during mechanical ventilation in intensive care from the perspectives of patients and family members. DESIGN: This research was a qualitative study with a naturalistic inquiry framework adhering to the Consolidated Criteria for Reporting Qualitative Research guidelines. METHOD: In-depth, semi-structured conversations were conducted with five patients and six family members who had either personally experienced or witnessed their loved ones being physically restrained during mechanical ventilation in intensive care. Data collection occurred between March 2018 and June 2019. These conversations were audio-recorded and transcribed. Reflexive thematic analysis was used to analyse the data. RESULTS: Three major themes emerged from the data. These themes were: Being tied down; Feeling helpless; and Finding light in the darkness. CONCLUSION: The experience of physical restraints during mechanical ventilation in intensive care leads to traumatic experiences which can impact patients and families long after their ICU stay. Holistic care, which considers the physical, emotional and psychological needs of patients and families, should be more thoroughly explored when managing treatment interference to minimize harm. IMPACT: This study gained insight into the physical, emotional and psychological consequences of applying physical restraints to patients who are mechanically ventilated as an intervention for preventing treatment interference. The findings of this study have the potential to improve ICU patient and family outcomes by influencing current physical restraint practices. Recommendations from this research can contribute to practice change by informing policy, shifting workplace culture and norms about restraints, and encouraging education and training.

Analysis of Preferred Music of Mechanically Ventilated Intensive Care Unit Patients Enrolled in a Randomized Controlled Trial.

Objective: Music listening interventions are utilized in a wide variety of clinical settings to help patients manage stress, anxiety, pain, discomfort, as well as attendant influences on sedative exposure, delirium, and cognitive functioning. While the body of research regarding the use of music-based listening interventions continues to grow, there is a paucity of information in the literature about specific music used for listening interventions. The purpose of this secondary analysis is to examine the music that study participants identified as their preferred music and listened to during the study. Design: This secondary analysis is based on data from a parent study, which was a three-arm randomized controlled trial attesting a patient-directed music (PDM) listening protocol to manage the psychophysiological symptom of anxiety. Setting: Twelve intensive care units in a major metropolitan area in the United States. Subjects: Participants included the 126 mechanically ventilated patients enrolled and randomized to the PDM listening arm of the study. Results: Data presented in this study include playlists from the 12 genres patients self-identified as preferred with specific groups and artists requested for music listening during the study. Discographies of the playlists are also included. Conclusions: The efficacy of interventions is impacted by the design of the intervention and the selection of music utilized. Implications of this analysis further explore the role of a board-certified music therapist (MT-BC) in designing and implementing a music listening intervention. The specialized knowledge on the therapeutic use and benefits of music that an MT-BC possesses supports the development of quality study intervention and appropriate implementation. The review of the music utilized in the parent study provides detailed information about the music utilized to inform future research focused on music listening interventions to effectively build on previous studies. Clinical Trial Registration: ClinicalTrials.gov NCT00440700.

Feasibility of a home-based interdisciplinary rehabilitation program for patients with Post-Intensive Care Syndrome: the REACH study.

BACKGROUND: Survivors of critical illness experience long-term functional challenges, which are complex, heterogeneous, and multifactorial in nature. Although the importance of rehabilitation interventions after intensive care unit (ICU) discharge is universally recognized, evidence on feasibility and effectiveness of home-based rehabilitation programs is scarce and ambiguous. This study investigates the feasibility of an interdisciplinary rehabilitation program designed for patients with Post-Intensive Care Syndrome (PICS) who are discharged home. METHODS: A mixed method, non-randomized, prospective pilot feasibility study was performed with a 6-month follow-up, comparing the intervention (REACH) with usual care. REACH was provided by trained professionals and included a patient-centered, interdisciplinary approach starting directly after hospital discharge. Primary outcomes were patient safety, satisfaction, adherence, referral need and health care usage. Secondary outcomes, measured at 3 timepoints, were functional exercise capacity, self-perceived health status, health-related quality of life (HRQoL), return to work and psychotrauma. Risk of undernutrition was assessed at baseline. RESULTS: 43 patients with a median mechanical ventilation duration of 8 (IQR:10) days, were included in the study and 79.1% completed 6-month follow-up. 19 patients received the intervention, 23 received usual care. Groups were similar for gender distribution and ICU length of stay. No adverse events occurred. REACH participants showed higher satisfaction with treatment and reported more allied health professional visits, while the usual care group reported more visits to medical specialists. Qualitative analysis identified positive experiences among REACH-professionals related to providing state-of-the-art interventions and sharing knowledge and expertise within an interprofessional network. Similar recovery was seen between groups on all secondary outcomes, but neither group reached reference values for HRQoL at 6 months. Larger return to work rates were seen in the REACH group. Prevalence of undernutrition at hospital discharge was high in both groups (> 80%), warranting the need for careful tuning of physical therapy and nutritional interventions. CONCLUSIONS: This study shows that providing early, home-based rehabilitation interventions for patients with PICS-related symptoms is feasible and perceived positively by patients and professionals. When provided in an interdisciplinary collaborative network state of the art, person-centered interventions can be tailored to individual needs potentially increasing patient satisfaction, adherence, and efficacy. Registered in the Dutch Trial register: NL7792: https://www.trialregister.nl/trial/7792 , registered 7-06-2019.

Post-Discharge Health Status and Symptoms in Patients with Severe COVID-19.

BACKGROUND: Little is known about long-term recovery from severe COVID-19 disease. Here, we characterize overall health, physical health, and mental health of patients 1 month after discharge for severe COVID-19. METHODS: This was a prospective single health system observational cohort study of patients ≥ 18 years hospitalized with laboratory-confirmed COVID-19 disease who required at least 6 l of oxygen during admission, had intact baseline cognitive and functional status, and were discharged alive. Participants were enrolled between 30 and 40 days after discharge. Outcomes were elicited through validated survey instruments: the PROMIS® Dyspnea Characteristics and PROMIS® Global Health-10. RESULTS: A total of 161 patients (40.6% of eligible) were enrolled; 152 (38.3%) completed the survey. Median age was 62 years (interquartile range [IQR], 50-67); 57 (37%) were female. Overall, 113/152 (74%) participants reported shortness of breath within the prior week (median score 3 out of 10 [IQR 0-5]), vs 47/152 (31%) pre-COVID-19 infection (0, IQR 0-1), p < 0.001. Participants also rated their physical health and mental health as worse in their post-COVID state (43.8, standard deviation 9.3; mental health 47.3, SD 9.3) compared to their pre-COVID state, (54.3, SD 9.3; 54.3, SD 7.8, respectively), both p < 0.001. Physical and mental health means in the general US population are 50 (SD 10). A total of 52/148 (35.1%) patients without pre-COVID oxygen requirements needed home oxygen after hospital discharge; 20/148 (13.5%) reported still using oxygen at time of survey. CONCLUSIONS: Patients with severe COVID-19 disease typically experience sequelae affecting their respiratory status, physical health, and mental health for at least several weeks after hospital discharge.

Prevalence and risk factors for delirium in critically ill patients with COVID-19 (COVID-D): a multicentre cohort study.

BACKGROUND: To date, 750 000 patients with COVID-19 worldwide have required mechanical ventilation and thus are at high risk of acute brain dysfunction (coma and delirium). We aimed to investigate the prevalence of delirium and coma, and risk factors for delirium in critically ill patients with COVID-19, to aid the development of strategies to mitigate delirium and associated sequelae. METHODS: This multicentre cohort study included 69 adult intensive care units (ICUs), across 14 countries. We included all patients (aged ≥18 years) admitted to participating ICUs with severe acute respiratory syndrome coronavirus 2 infection before April 28, 2020. Patients who were moribund or had life-support measures withdrawn within 24 h of ICU admission, prisoners, patients with pre-existing mental illness, neurodegenerative disorders, congenital or acquired brain damage, hepatic coma, drug overdose, suicide attempt, or those who were blind or deaf were excluded. We collected de-identified data from electronic health records on patient demographics, delirium and coma assessments, and management strategies for a 21-day period. Additional data on ventilator support, ICU length of stay, and vital status was collected for a 28-day period. The primary outcome was to determine the prevalence of delirium and coma and to investigate any associated risk factors associated with development of delirium the next day. We also investigated predictors of number of days alive without delirium or coma. These outcomes were investigated using multivariable regression. FINDINGS: Between Jan 20 and April 28, 2020, 4530 patients with COVID-19 were admitted to 69 ICUs, of whom 2088 patients were included in the study cohort. The median age of patients was 64 years (IQR 54 to 71) with a median Simplified Acute Physiology Score (SAPS) II of 40·0 (30·0 to 53·0). 1397 (66·9%) of 2088 patients were invasively mechanically ventilated on the day of ICU admission and 1827 (87·5%) were invasively mechanical ventilated at some point during hospitalisation. Infusion with sedatives while on mechanical ventilation was common: 1337 (64·0%) of 2088 patients were given benzodiazepines for a median of 7·0 days (4·0 to 12·0) and 1481 (70·9%) were given propofol for a median of 7·0 days (4·0 to 11·0). Median Richmond Agitation-Sedation Scale score while on invasive mechanical ventilation was -4 (-5 to -3). 1704 (81·6%) of 2088 patients were comatose for a median of 10·0 days (6·0 to 15·0) and 1147 (54·9%) were delirious for a median of 3·0 days (2·0 to 6·0). Mechanical ventilation, use of restraints, and benzodiazepine, opioid, and vasopressor infusions, and antipsychotics were each associated with a higher risk of delirium the next day (all p≤0·04), whereas family visitation (in person or virtual) was associated with a lower risk of delirium (p<0·0001). During the 21-day study period, patients were alive without delirium or coma for a median of 5·0 days (0·0 to 14·0). At baseline, older age, higher SAPS II scores, male sex, smoking or alcohol abuse, use of vasopressors on day 1, and invasive mechanical ventilation on day 1 were independently associated with fewer days alive and free of delirium and coma (all p<0·01). 601 (28·8%) of 2088 patients died within 28 days of admission, with most of those deaths occurring in the ICU. INTERPRETATION: Acute brain dysfunction was highly prevalent and prolonged in critically ill patients with COVID-19. Benzodiazepine use and lack of family visitation were identified as modifiable risk factors for delirium, and thus these data present an opportunity to reduce acute brain dysfunction in patients with COVID-19. FUNDING: None. TRANSLATIONS: For the French and Spanish translations of the abstract see Supplementary Materials section.

The ED-AWARENESS Study: A Prospective, Observational Cohort Study of Awareness With Paralysis in Mechanically Ventilated Patients Admitted From the Emergency Department.

STUDY OBJECTIVE: Awareness with paralysis is a devastating complication for patients receiving mechanical ventilation and risks long-term psychological morbidity. Data from the emergency department (ED) demonstrate a high rate of longer-acting neuromuscular blocking agent use, delayed analgosedation, and a lack of sedation depth monitoring. These practices are discordant with recommendations for preventing awareness with paralysis. Despite this, awareness with paralysis has not been rigorously studied in the ED population. Our objective is to assess the prevalence of awareness with paralysis in ED patients receiving mechanical ventilation. METHODS: This was a single-center, prospective, observational cohort study on 383 mechanically ventilated ED patients. After extubation, we assessed patients for awareness with paralysis by using the modified Brice questionnaire. Three expert reviewers independently adjudicated awareness with paralysis. We report the prevalence of awareness with paralysis (primary outcome); the secondary outcome was perceived threat, a mediator for development of posttraumatic stress disorder. RESULTS: The prevalence of awareness with paralysis was 2.6% (10/383). Exposure to rocuronium at any point in the ED was significantly different between patients who experienced awareness with paralysis (70%) versus the rest of the cohort (31.4%) (unadjusted odds ratio 5.1; 95% confidence interval 1.30 to 20.1). Patients experiencing awareness with paralysis had higher mean values on the threat perception scale, denoting a higher degree of perceived threat, compared with patients who did not experience awareness with paralysis (13.4 [SD 7.7] versus 8.5 [SD 6.2]; mean difference 4.9; 95% confidence interval 0.94 to 8.8). CONCLUSION: Awareness with paralysis occurs in a significant minority of ED patients who receive mechanical ventilation. Potential associations of awareness with paralysis with ED care and increased perceived threat warrant further evaluation.

Dyspnea, Acute Respiratory Failure, Psychological Trauma, and Post-ICU Mental Health: A Caution and a Call for Research.

Dyspnea is an uncomfortable sensation with the potential to cause psychological trauma. Patients presenting with acute respiratory failure, particularly when tidal volume is restricted during mechanical ventilation, may experience the most distressing form of dyspnea known as air hunger. Air hunger activates brain pathways known to be involved in posttraumatic stress disorder (PTSD), anxiety, and depression. These conditions are considered part of the post-intensive care syndrome. These sequelae may be even more prevalent among patients with ARDS. Low tidal volume, a mainstay of modern therapy for ARDS, is difficult to avoid and is likely to cause air hunger despite sedation. Adjunctive neuromuscular blockade does not prevent or relieve air hunger, but it does prevent the patient from communicating discomfort to caregivers. Consequently, paralysis may also contribute to the development of PTSD. Although research has identified post-ARDS PTSD as a cause for concern, and investigators have taken steps to quantify the burden of disease, there is little information to guide mechanical ventilation strategies designed to reduce its occurrence. We suggest such efforts will be more successful if they are directed at the known mechanisms of air hunger. Investigation of the antidyspnea effects of sedative and analgesic drugs commonly used in the ICU and their impact on post-ARDS PTSD symptoms is a logical next step. Although in practice we often accept negative consequences of life-saving therapies as unavoidable, we must understand the negative sequelae of our therapies and work to minimize them under our primary directive to "first, do no harm" to patients.

Mental health impact of admission to the intensive care unit for COVID-19.

The pandemic caused by Covid-19 has long term ramifications for many, especially those patients who have experienced an intensive care unit (ICU) admission including ventilation and sedation. This paper will explore aspects of care delivery in the ICU regarding the current pandemic and the impact of such on the mental health of some of these patients. Post discharge, patients will be returning to a very different community incorporating social distancing, and in some cases, social isolation and/or shielding. Many may experience a multitude of physical and mental health complications which can ultimately impact upon each other, therefore a bio-psycho-pharmaco-social approach to discharge, case management, risk assessment and positive behavioural support planning is recommended.

Home mechanical ventilation: quality of life patterns after six months of treatment.

BACKGROUND: It has been shown that home mechanical ventilation improves quality of life, but it has not been widely studied which particular patient groups benefit the most from starting this type of therapy. The purpose of this prospective observational study was to evaluate quality of life change patterns 6 months after initiation of home mechanical ventilation in patients suffering from chronic respiratory failure using patient reported outcomes. METHODS: We enrolled 74 chronic respiratory failure patients starting invasive or noninvasive home mechanical ventilation through the Semmelweis University Home Mechanical Ventilation Program. Quality of life was evaluated at baseline and at 6 months after initiation of home mechanical ventilation using the Severe Respiratory Insufficiency Questionnaire. RESULTS: Overall quality of life showed 10.5% improvement 6 months after initiation of home mechanical ventilation (p < 0.001). The greatest improvement was observed in Respiratory complaint (20.4%, p = 0.015), Sleep and attendant symptoms (19.3%, p < 0.001), and Anxiety related subscales (14.4%, p < 0.001). Interface (invasive versus noninvasive ventilation) was not associated with improvement in quality of life (p = 0.660). Severely impaired patients showed the greatest improvement (CC = -0.328, p < 0.001). Initial diagnosis contributed to the observed change (p = 0.025), with chronic obstructive pulmonary disease and obesity hypoventilation syndrome patients showing the greatest improvement, while amyotrophic lateral sclerosis patients showed no improvement in quality of life. We found that patients who were started on long term ventilation in an acute setting, required oxygen supplementation and had low baseline quality of life, showed the most improvement during the six-month study period. CONCLUSIONS: Our study highlights the profound effect of home mechanical ventilation on quality of life in chronic respiratory failure patients that is indifferent of ventilation interface but is dependent on initial diagnosis and some baseline characteristics, like acute initiation, oxygen supplementation need and baseline quality of life. TRIAL REGISTRATION: This study was approved by and registered at the ethics committee of Semmelweis University (SE TUKEB 251/2017; 20th of December, 2017).

The impact of long-term ventilator-use on health-related quality of life and the mental health of children with neuromuscular diseases and their families: need for a revised perspective?

BACKGROUND: Life extension by medical interventions and health-related quality of life (HRQOL) are sometimes conflicting aspects of medical care. Long-term ventilation in children with neuromuscular disease is a well-established life-extending procedure and often at the center of this conflict. HRQOL and the mental health of affected children and their families become even more important in respect to emerging therapies in neuromuscular diseases with longer life-expectancy of treated patients and considerable costs of medical treatment. METHODS: We performed a questionnaire survey in a total of forty-three families of children with neuromuscular disease treated in the University Medical Center Hamburg-Eppendorf and the Children's Hospital Altona. We evaluated self- and proxy-reported HRQOL and mental health outcomes of affected children and their parents using validated and age-appropriate instruments. RESULTS: Compared to normative data, children with neuromuscular diseases and their families experienced a lower HRQOL and mental health. However, there was no additional negative influence on the overall HRQOL by ventilator use. CONCLUSIONS: As ventilator use was not responsible for the reduction of HRQOL and mental health our data contributes an important aspect to the discussion about life-prolonging procedures, in particular mechanical ventilation, in severly disabled patients.

Feasibility of a Behavioral Intervention to Reduce Psychological Distress in Mechanically Ventilated Patients.

Many survivors of acute respiratory failure suffer from mood disorders following discharge from the hospital. We investigated the feasibility of intensivists delivering psychological support based on positive suggestion (PSBPS) to 20 intubated patients to reduce their psychological distress. Thirteen patients completed follow-up surveys. Of those, 9 remembered the intensive care unit physician talking to them, and 7 described it as comforting. Five patients (38%) met criteria for anxiety, depression, and acute stress. In comparison to historical controls, intervention may be associated with lower estimated odds of anxiety. PSBPS can be performed with patients in parallel with medical treatment to potentially reduce psychological morbidity and to humanize critical care. A larger randomized study is warranted to assess the efficacy of PSBPS.

Palliative medicine family conferences and caregiver psychological distress during prolonged mechanical ventilation.

OBJECTIVES: Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers. METHODS: A longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys. RESULTS: In total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016-2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients' death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: -44.04% and 95% CIs -75.65 to -12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: -0.35% and 95% CI -0.58 to -0.11 on IES and coefficient: -0.22% and 95% CI -0.40 to -0.05 on CES-D) among caregivers following the patients' death. Caregivers' who accepted the concept of palliative care had fewer psychological symptoms after patients' death (coefficient: -3.29% and 95% CI -6.32 to -0.25 on IES and coefficient: -3.22% and 95% CI -5.24 to -1.20 on CES-D). CONCLUSIONS: Palliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.

Understanding patients' experiences of being mechanically ventilated in the Intensive Care Unit: Findings from a meta-synthesis and meta-summary.

AIMS AND OBJECTIVES: To synthesise the evidence reported in qualitative studies concerning the lived experiences of adult patients receiving mechanical ventilation in Intensive Care Unit (ICU). BACKGROUND: Critically ill patients receiving mechanical ventilation in the ICU have been reported to suffer from severe physical and emotional responses such as hopelessness, anxiety, high levels of frustration and stress. Recent improvements in the field of mechanical ventilation and sedative medications as experienced by patients that can inform nursing care have not been summarised to date. DESIGN: A systematic review of qualitative studies followed by a meta-synthesis and a meta-summary was performed. METHODS: Four electronic databases were searched by two authors in June 2019. A total of nine studies were included and evaluated based on their methodological quality using the Critical Appraisal Skills Programme checklist. RESULTS: A total of 24 codes emerged from the abstraction process, which were categorised into 11 categories and four themes: (a) "The effect of the intense stress on the body's systems," (b) "The induced negative emotional situations," (c) "The feeling of being cared for in a hospital setting" and (d) "The perceived support from the family and loved ones." Furthermore, the most frequent codes across studies were "Being afraid," "Feeling supervised," "Feeling comforted," "Failing to communicate," and "Experiencing difficulties in breathing," with an intensity of 66.6%. CONCLUSION: Patients receiving mechanical ventilation have expressed a general sense of vulnerability, of which critical care nurses need to be aware. RELEVANCE TO CLINICAL PRACTICE: Findings suggest the need for improvements at the nursing, unit, educational and policy levels; furthermore, more research is also required at the international levels given the current trends towards no sedation protocols for the management of ICU patients: listening to their experiences becomes imperative, in order to ensure an awake, comfortable and ventilator-tolerant patient.

Validation of the Finnish severe respiratory insufficiency questionnaire.

INTRODUCTION: Chronic respiratory insufficiency impacts patients' lives and reduces quality of life. The Severe Respiratory Insufficiency (SRI) questionnaire examines health-related quality of life and is designed specifically for patients receiving home mechanical ventilation (HMV) for chronic respiratory failure (CRF). OBJECTIVES: The aim of this study was to validate the Finnish version of the SRI and study its reproducibility in patients with CRF. METHODS: Our 74 patients receiving HMV or long-term oxygen treatment for CRF or both completed the SRI and St George's Respiratory questionnaires (SGRQ) three times (at baseline, and then one week and one month later). Reliability and validity of the questionnaires was analysed with Cronbach's alpha and intraclass correlation coefficient. Patients were prospectively followed up for 5 years, with data collected on their use of hospital services and mortality. RESULTS: Cronbach's alpha in the SRI ranged from 0.67 to 0.88 and was >0.7 on all subscales except the "attendant symptoms and sleep". On four subscales, Cronbach's alpha was >0.8, and on the summary scale, 0.95. The SRI showed high correlation with SGRQ. Both tests showed good reproducibility. During the 5-year follow-up, 27 (36%) patients died. CONCLUSIONS: The Finnish SRI proved valid, reliable and reproducible. Its psychometric properties were good and similar to those of the original questionnaire and of other validation studies.

Everyday life experiences of close relatives of people with amyotrophic lateral sclerosis receiving home mechanical ventilation-A qualitative study.

AIMS AND OBJECTIVES: To explore everyday life experience of relatives of people with amytrophic lateral sclerosis (ALS) living at home with mechanical ventilation and formal caregivers. BACKGROUND: ALS is a rapidly progressive disease affecting not only the patient but also close relatives. A burden is placed on relatives affecting their mental and physical health in settings where they provide care. Few studies have examined the everyday life challenges of close relatives with formal caregivers at home and home mechanical ventilation, which often prolongs survival. DESIGN: We undertook a qualitative study with a phenomenological-hermeneutic approach inspired by Ricoeur. Eleven close relatives were interviewed, and the three-level analysis method developed by Dreyer and Pedersen was conducted. The Consolidated Criteria for Reporting Qualitative Research checklist was used. RESULTS: Four themes were derived from the data during analysis: Vulnerable relatives fighting to keep track of everything, Formal caregivers-a distressing relief, A prison without personal space and We are in this together until the end. CONCLUSIONS: Close relatives of persons with ALS are burdened with everyday life challenges despite having formal caregivers at home, and they feel imprisoned. Despite these challenges and concerns about the end of life of their relative, they stay until the end. RELEVANCE TO CLINICAL PRACTICE: There is clearly a need to investigate interventions in clinical practice supporting close relatives to prepare them for what to expect during a prolonged disease course.