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The aim of this review was to identify, review, and synthesize primary qualitative literature to answer the question “what are the roles and experiences of informal caregivers providing care to a person with non-malignant respiratory disease at end of life from the perspectives of the caregiver and recipient of care?”
Methods
This qualitative systematic review was undertaken using thematic synthesis. Electronic databases (British Nursing Database, Cumulative Index to Nursing and Allied Health Literature Plus, Medline, PsycInfo, ProQuest Sociology, Allied and Complementary Medicine Database [AMED]) covering nursing, medicine, and social sciences were systematically searched from inception to October 2024. Studies were included if they reported data on the experiences and roles of caregivers in non-malignant respiratory disease at end of life, from the perspective of the caregiver or the person with non-malignant respiratory disease. Twenty-two papers met the eligibility criteria and were included in the review. Quality assessment was undertaken using the JBI Critical Appraisal Checklist for Qualitative Research.
Results
Thematic synthesis of the data generated five analytical themes: Caregivers experience shifting identity and new roles; Adaptation is necessary to cope with loss and change; Caregivers need more information and coordinated care services; Emotional effects of caregiving; and Future uncertainty and facing death. The findings illustrated the complexity of the caregiving role and highlight unmet needs during the end of life stage.
Significance of results
This evidence synthesis highlights the significant contribution caregivers make in the lives and deaths of those with non-malignant respiratory disease. Challenges of caregiving in this context increase the stress of caregivers, including unpredictable disease progression and difficult symptoms such as breathlessness. There are persistent inequalities between malignant and non-malignant care pathways. Caregivers would welcome more recognition and information from healthcare professionals to support their role.
Installation of a percutaneous gastrostomy tube is often needed for patients with amyotrophic lateral sclerosis (ALS) who develop severe dysphagia. However, there is uncertainty regarding the optimal timing for this procedure, especially with regard to the decline in respiratory function. Several guidelines suggest that gastrostomy should be placed before the forced vital capacity (FVC) drops below 50%, since the procedural risks are heightened. However, multiple studies argue that this procedure could be safe in patients with an FVC of less than 50%.
Methods:
In this retrospective study, we reviewed the medical records of all patients with ALS who had a gastrostomy at our center between 2010 and 2023. Our primary objective was to identify the 30-day mortality rate and the incidence of complications after this procedure. Also, we investigated whether predictive factors of adverse outcomes could be identified, particularly to evaluate if there was an association with pulmonary function.
Results:
We included 54 patients. The 30-day mortality rate was 9.3%, and the incidence of major complications was 16.7%. There was no statistical difference in complications between percutaneous endoscopic and radiologically inserted gastrostomy procedures. Predictive factors for complications were pre-existing pulmonary disease, pre-procedural CO2 levels and, although not statistically significant, diabetes. There was no association between FVC and the occurrence of adverse outcomes, although only 70% of patients had a measure of pulmonary function.
Conclusion:
In our study, there was no correlation between FVC and the occurrence of adverse events from the gastrostomy procedure. This suggests that the traditional cutoff of 50% FVC level should be re-examined and explored further in future studies.
The trajectory of care for patients with neurologic respiratory impairment can roughly be subdivided into the three stages of acute, post-acute and long-term care. Patients with acute neurological illness and respiratory impairment are treated in stroke units, intermediate care units or intensive care units, depending on the severity of their condition. Patients with respiratory impairment due to chronic or chronic progressive neurological conditions are treated in variable settings, comprising outpatient clinics, sleep medicine departments and hospital wards as well as medical and neurosciences intermediate and intensive care units. The disciplines of neurology and pulmonology both strongly contribute to the post-acute setting of neurorespiratory care. Post-acute treatment facilities, where neurological patients with tracheostomy or mechanical ventilation are treated, can be part of acute care hospitals or function as stand-alone institutions. Health care structures and centers for neurological patients with respiratory impairment have been comprehensively organized for only a few countries. To explore differences (and detect needs) this chapter provides some insights in healthcare structures and their variability between regions and countries – the disparity is obvious.
Neuromuscular disorders cause respiratory failure when they significantly impair the respiratory muscle pump. This is a complex system involving the diaphragm, intercostal, neck, shoulder girdle, abdominal wall and possibly paraspinal muscles. The dilator muscles of the palate, pharynx and larynx maintain a patent airway and air conduit. The diaphragm is the main muscle of inspiration, but is aided by the parasternal intercostals, and additionally by the accessory respiratory muscles in forceful inspiration, diaphragmatic weakness or compromised diaphragmatic function as is the case in lung emphysema. Exhalation is passive, but forceful expiration and cough require the abdominal wall and a portion of the intercostals. This chapter focuses on the physiology of the muscles involved in respiration, and the recognition of developing neuromuscular respiratory failure, its clinical evaluation and assessment, and basic principles of management.
Respiratory dysfunction can occur at one or more of the following levels: central neurons including the upper motor neuron, brainstem regions of respiratory control. lower motor neurons, peripheral motor nerves, the neuromuscular junction and the respiratory muscles. Any acute or chronic lesion or condition that affects regions of respiratory control can affect the respiratory system by altering breathing pattern and respiratory drive, leading to central breathing irregularities. Dysfunction of lower motor neurons, the peripheral motor nerves, the neuromuscular junction and the muscle typically results in an impairment of the lower motor neurons, the peripheral motor nerves, the neuromuscular junction or the muscle typically results in an impairment of the respiratory pump which commonly leads to chronic hypercapnia, also called respiratory failure type 2. Moreover, weakness of bulbar muscles can cause an airway obstruction resulting in apneic periods with hypercapnia and hypoxemia. Of note, central and peripheral alterations simultaneously affect ventilation in some disorders, which highlights the need for a specific and sometimes individual diagnostic approach. Considering the impact of respiratory insufficiency on morbidity and mortality, the respiratory function must be assessed and monitored regularly.
Edited by
Dharti Patel, Mount Sinai West and Morningside Hospitals, New York,Sang J. Kim, Hospital for Special Surgery, New York,Himani V. Bhatt, Mount Sinai West and Morningside Hospitals, New York,Alopi M. Patel, Rutgers Robert Wood Johnson Medical School, New Jersey
This chapter covers respiratory physiology, including lung volumes and mechanics, ventilation and perfusion, compliance, diffusion, oxygen transport, carbon dioxide transport, effects of hypercarbia and hypoxemia, arterial blood gas interpretation, work of breathing, control of ventilation, non-respiratory functions of the lung, and the effects of perioperative smoking. The material is presented in a concise review format, with an emphasis on key words and concepts.
Edited by
James Ip, Great Ormond Street Hospital for Children, London,Grant Stuart, Great Ormond Street Hospital for Children, London,Isabeau Walker, Great Ormond Street Hospital for Children, London,Ian James, Great Ormond Street Hospital for Children, London
This chapter provides an outline of the areas of paediatric intensive care relevant to an anaesthetist. The chapter examines current epidemiology in critical care and the characteristics of children requiring transfer from local hospitals to specialist centres. It reviews differences between adult and paediatric respiratory physiology, outlines an approach to medications used in intubation and discusses respiratory support for critically unwell children. The chapter provides key basic guidance on the use of high-frequency oscillatory ventilation (HFOV) in children. Maintenance fluid and inotrope selection are also reviewed. The chapter also reviews presentations commonly encountered on paediatric intensive care units (PICU) across respiratory, cardiovascular, gastrointestinal, renal, neurological, metabolic and infectious conditions. Neuroprotection criteria are provided, with key relevance to anaesthetists who may need to undertake time-critical transfers from their usual place of work to neurosurgical centres. Organ donation and non-accidental injury are also discussed.
This chapter details the epidemiology, route of spread, symptoms and prevalence, relating to viral infections acquired while abroad (HBV, HAV, HEV, HIV, noroviruses, dengue fever, arboviruses, haemorrhagic fever viruses, rabies).
This chapter provides an overview of the antiviral drugs currently available, including maraviroc, aciclovir, penciclovir, ganciclovir, amantadine, zydovudine, adefovir, ribavirin, indinavir , oseltamivir, zanamivir, interferon alpha, rituximab , palivizumab, cidofovir, brincidofovir, foscarnet, remdesivir and paxlovid with an indication of their modes of action for treating virus infections, including HIV, herpes viruses, respiratory viruses, HBV, HCV, CMV, adenoviruses , BK, EBV (especially for PTLD), RSV, poxviruses and SARS-CoV-2.
This chapter deals with how infection control procedures can be used to minimise the spread of viral infections transmitted via the respiratory, gastrointestinal, blood-borne, sexual, vertical and vector-borne routes. It also details infection control strategies in hospitals and in the community via universal precautions, respiratory precautions, enteric precautions and those for highly dangerous pathogens. Post-exposure prophylaxis and management of outbreaks is also discussed along with a list of notifiable infections.
This chapter details the epidemiology, route of spread, prevalence and incubation periods of viruses causing respiratory symptoms (adenoviruses, SARS-CoV-2, enteroviruses, influenza, HMPV, parainfluenzaviruses, RSV, rhinoviruses). It gives information on symptoms, laboratory diagnosis, treatment, prophylaxis and infection control.
Overview of respiratory complications such as hemoptysis, hiccups, laryngectomy and tracheostomy troubleshooting, airway obstruction, pneumonitis, and pleural effusion management
Overview of respiratory complications such as hemoptysis, hiccups, laryngectomy and tracheostomy troubleshooting, airway obstruction, pneumonitis, and pleural effusion management
Overview of respiratory complications such as hemoptysis, hiccups, laryngectomy and tracheostomy troubleshooting, airway obstruction, pneumonitis, and pleural effusion management
Overview of respiratory complications such as hemoptysis, hiccups, laryngectomy and tracheostomy troubleshooting, airway obstruction, pneumonitis, and pleural effusion management
Overview of respiratory complications such as hemoptysis, hiccups, laryngectomy and tracheostomy troubleshooting, airway obstruction, pneumonitis, and pleural effusion management
Overview of respiratory complications such as hemoptysis, hiccups, laryngectomy and tracheostomy troubleshooting, airway obstruction, pneumonitis, and pleural effusion management
Overview of respiratory complications such as hemoptysis, hiccups, laryngectomy and tracheostomy troubleshooting, airway obstruction, pneumonitis, and pleural effusion management
Overview of respiratory complications such as hemoptysis, hiccups, laryngectomy and tracheostomy troubleshooting, airway obstruction, pneumonitis, and pleural effusion management
Echinoderms have evolved diverse and disparate morphologies throughout the Phanerozoic. Among them, blastozoans, an extinct group of echinoderms that were an important component of Paleozoic marine ecosystems, are primarily subdivided into groups based on the morphology of respiratory structures. However, systematic and phylogenetic research from the past few decades have shown that respiratory structures in blastozoans are not group-defining and they have re-evolved throughout echinoderm evolution. This Element provides a review of the research involving blastozoan respiratory structures, along with research concerning the morphology, paleoecology, and ontogeny of each of the major groupings of blastozoans as it relates to their corresponding respiratory structures. Areas of future research in these groups are also highlighted.