Background and significance: It is estimated that 4800 children living in the USA are currently supported by mechanical ventilation at home. Despite advances in technology, the mortality rate of 21% remains high. Previous studies identified knowledge gap in the responses to emergencies in the home. Therefore, a training module focusing on the response to these emergencies is needed.

Purpose /aims of the study: Children’s Hospital of Los Angeles (CHLA) approached regional home clinicians and formed an advisory panel to develop a training content for home mechanical ventilation (HMV) emergency management.

Methods: We surveyed 28 HMV clinicians in So. California asking them to recall HMV emergencies in the home settings. We gathered this advisory panel for a focus group via the modified Delfi method to develop the training content of responses to HMV emergencies.

Results: Ninety-two HMV emergency scenarios were recalled with 412 years of clinical experience on home HMV management. Data were categorized into 15 emergency situations. The expert panel deliberated on 1) the emergent situation 2) the immediate response 3) the possible causes and 4) pearls- the collective sharing of experiences on these encounters.

Conclusion: A training didactic tool for in-home caregivers and nurses of HMV children was developed. We hope that providing focused education, based on real world experience and wisdom, will help reduce accidental deaths in children on HMV.

Kun SS, Miller C, Davidson-Ward S, Ellashek J, Keens TG (2020) Pediatric Home Mechanical Ventilation Emergency Responses for Home Caregivers and Nurses. Clin Res Pulmonol 7(1): 1048.

Children requiring home mechanical ventilation (HMV)” posed more challenges than the 9.4 million children in the United States with special health care needs [1, 2]. It is estimated that 4800 children living in the USA are currently supported by mechanical ventilation at home, and the prevalence of home mechanical ventilation for children is also similar in other developed nations [3]. However, despite advances in technology, readmissions and mortality remain high for these children [4-6]. The readmission rate for home mechanically ventilated children was reported at 40 % for the first year post initial discharge from the hospital, with the most common reasons being related to tracheostomy and respiratory issues [4]. A five-year mortality rate of 27.5 % and 21% were reported from two other studies [5, 6]. Many deaths were unexpected and from causes not directly related to their primary reason for chronic respiratory failure. Nearly 20% of these deaths were due to acute tracheostomy obstruction, tracheostomy accidents, and tracheal bleeding which required emergency action by the caregivers in the home [5].

How well are caregivers of children on HMV equipped to handle these in-home emergencies? Kun surveyed parents and in-home nurses of HMV children about their knowledge of home ventilators and emergency response [7]. She found that most caregivers incorrectly answered questions about the meaning of home ventilator alarms and response to emergency situations [7]. Nurses did not know more than parents, and the length of time a person cared for HMV children made no difference in their knowledge. Dougherty and Farre found similar deficiencies in caregiver knowledge [8,9]. The American Thoracic Society (ATS) strongly recommends that ongoing education to acquire, reinforce, and augment skills required for patient care be provided to both the family and professional caregivers of children requiring chronic home invasive ventilation [3,10]. However, being a solo practitioner in the home with primarily one patient, it is difficult to gain knowledge in emergency care. In-home nurses caring for pediatric HMV patients need and want training in emergency care to improve their knowledge and clinical skills [11]. Thus, a call for action in decreasing readmissions and accidental mortality of ventilator dependent children at home by focused training programs for home nurses is warranted [6].

We hypothesize that the development of a training module for in-home caregivers and nurses of HMV children, focusing on responses to emergency situations will reduce accidental deaths. We believe there is untapped experience and wisdom in those caregivers that could be utilized to develop such an educational content based on real-life experience. Therefore, we convened a group of experienced caregivers and health care professionals, with experience caring for children on HMV, to educate us about real life emergency situations and to help us develop a training model with appropriate responses to these situations.

An inter-professional workgroup (HMV Advisory Panel) of 28 individuals, who had expertise in the care of children on HMV, were invited to participate in a focus group. The clinicians were drawn from home ventilator and respiratory equipment manufacturers, home clinical Respiratory Care Practitioners (RCP), home health nursing agencies, clinicians from the Hospital HMV program, and three parents of HMV children. First, they completed a home emergency scenario survey on-line. Each participant was asked to recall up to eight emergency scenarios they had encountered in the home, and to recommend appropriate responses or management of each emergency scenario. The responses were complied, and a summary analysis of this survey was sent to each participant for review. On-line survey questions included tracheostomy and ventilator related emergency situations, with possible causes, appropriate responses, and shared experience on each scenario. We calculated the years of experience in working with HMV children in their respective professional discipline. Subsequently, the participants were invited back to meet as a group for a face to face focus discussion on the details of each emergency. The application of the modified Delphi Study tools was utilized to achieve consensus [12-14]. This discussion identified emergency scenarios, possible causes, recommended actions, and clinical “pearls”.

The participation in this survey and focus group was totally voluntary. There was no financial obligation or remuneration to participate in this study. This study was approved by the Children’s Hospital Los Angeles institutional review board.

Twenty-eight participants formed the HMV Advisory Panel; 9 lead RCPs from community vendors/manufacturer, 1 RCP from within the hospital, 9 nursing clinicians from home health agencies, 4 nurse specialists from the hospital, 2 pulmonologists, and 3 parents. They were the key stakeholders sharing their expertise on the subject. Collectively the participants had 412 years working with HMV children. Together they recalled 92 emergencies scenarios. These were then grouped into 15 major emergency scenario categories. During the focus group discussion, the group deliberated on the appropriate responses to each situation. They also included responses from the survey data that were more likely to be useful for that emergency scenario. The open discussion allowed collaborative recommendations that resulted in identifying some helpful suggestions from personal experience and observation. Consensus was reached with an open forum of discussion. The results of the eight-hour focus group discussion were structured into four areas: the emergency situations, the possible causes, the appropriate responses, and the pearls which were the result of collective brainstorming regarding what else could we offer on this topic. We structured the talking points into these four areas. The details of each emergency scenario are described in Table 1 and Table 2

The HMV Advisory Panel made the following general observations, which should be considered for each emergency scenario. The response to individual emergencies is dependent upon:

• The child’s medical condition.

• Familiarity with the child’s baseline.

• Location of where it happens - home, school, during transport? Preparation for out of home situations is critical since our data noted 1/3 of the scenarios were outside the patient’s home

• The type of help that is immediately available.

• The condition of the child at that moment.

• Your skill in HMV training.

• Whether driving to the ED or calling for ambulance transport is safe.

• Seeking emergency advance care when child has not returned to baseline.

• Calling for help if someone you know is available in the vicinity.

• Giving oxygen when desaturation is noted.

• Use of additional airway clearance therapy if deemed beneficial (for example for children with muscle weakness).

Being prepared before an emergency occurs was recommended to minimize the risks of an adverse outcome.

• Always have a resuscitation bag with you.

• Bag to mask ventilation is always an option.

• Remember the resuscitation bag is your backup ventilator.

• Always have the suctioning devices with you.

• Always have a spare tracheostomy tube for accidental decannulation or mucous obstruction and also a backup trach that is one size smaller in case the primary trach cannot be replaced.

• Call the respiratory vendor for mechanical problems when child is stable.

• Update your physician if needed.

The best way to address an emergent situation is to prevent it if all possible. In order to reduce the risk of an event, in-home caregivers and nurses should:

• Assess your own situation and determine risk factors frequently.

• Review and rehearse the possible emergency events.

• Take pictures of circuit and treatment set-up to assist others in checking or assembling equipment.

• Take a good inventory of all accessories used and keep extra on hand..

• Order medication and supplies on time.

• When in doubt-Consult!

• The BEST response to an emergency is to minimize the risk factors before it happens.

We developed an in-home emergency response training content for caregivers and nurses caring for children on HMV. Our educational material was based on real world experiences and wisdom of an interdisciplinary working group experienced in HMV home care. Many members of the panel were providers from within the hospital – respiratory care practitioners, nurses, and pulmonologists. Their experience is important even though they do not work in the home setting. Their role in the process reflects the initial preparation for home care, design of the training program and subsequent home care management in the outpatient settings on sick or emergency calls from our HMV population. Therefore, the recommended responses echoed a wealth of knowledge from all the stakeholders from both inside and outside the hospital setting. Using a survey and face-to-face focus group, their combined experience was used to identify common in-home emergencies situations and their most appropriate solutions. To our knowledge, a similar approach is not available to the general public. This additional emergency content deepens the knowledge of caregivers on emergency care. From our previous studies on the knowledge of our caregivers, this project addresses the knowledge gap [5, 7] identified in our earlier studies on tracheostomy and ventilator management.

Even though there are existing manufacturer’s instruction manuals on the operation of the ventilator, many caregivers consider our educational material on ventilators alarms a good general reference due to its clarity and practicality. We stressed that it is not a replacement or substitute for the information contained in the ventilator manufacturer’s instruction manual or the professional clinical judgement of their attending physician. But rather, the emergency scenarios offer a quick reference of how to respond in the home setting.

The face to face discussion generated robust awareness on the management of alarms and why they could be confusing to caregivers. For most ventilators, visual alarm indicators change from flashing to solidly lit when an alarm condition is resolved. However, there are exceptions when the ventilator visual indicators remain flashing when the alarm condition is resolved. In all cases the audible indicator stops when the alarm condition is resolved. There are also important differences in alarm setup and responses between ventilators and even between the different circuit types on the same ventilator. Since the type of ventilator and the way that ventilator is set up impacts how alarms work, it is vitally important to be aware of the type of breathing circuit setup in use and whether the volume alarms are related to inspiratory or expiratory volumes. An alarm is functioning only “if enabled” for all the alarms, except for Disconnection alarm. Anytime you have a disconnect, or a leak, you can have degradation of PEEP, which could lead to a low PEEP alarm and auto-triggering if the issue is not resolved in a pre-set number of breaths. Also note that for the same problem, such as mucous plugging, you could have an “Obstruction alarm” which is independent of the “High Pressure” alarm with some newer ventilators. Hence, the HMV emergency response of a patient and his/her ventilator alarm management needs to be customized to the type of ventilator used and the clinical risk associated with the medical condition.

Since our teaching module was created on a regional approach utilizing home and hospital clinicians from a major HMV program, we were able to gather valuable experience on the working of the functions and alarms of two to three major home ventilators that we used. We could focus on the management of uncuffed tracheostomy tubes, and the preference for pressure control ventilation. Hence, the training information is more pertinent than educational material from a program that might not have the same approach.

The assessment of an emergent situation requires a systematic approach to establish that the airway is patent, the ventilator is functioning and set properly, the ventilator accessories are intact, the environment they are in, and baseline changes of the child’s medical condition. The responses of each emergency scenario are listed, not particularly in a step by step order. But rather, the responses represent an inventory of possible solutions. It is not helpful to mandate that the responses follow certain sequence as the emergency situations might have different presentations.

The focus group discussion was especially helpful in identifying the risk of draining the power source such as the internal battery, and how to prolong the longevity of the battery. This led to the observation that ventilator hardware malfunctions were rare events [15]. However, running out of battery power and oxygen supply were common events posing further risk to provide adequate ventilation to the patient. It is emphasized that caregivers and nurses should be sure batteries remain charged when possible and that there is adequate oxygen supply in order to avoid emergency situations.

There is no central data repository for home care providers to record emergencies for HMV children. We developed our content based on the collective experience of stakeholders in our region. In managing the HMV patient, the distinction of whether it is a tracheostomy issue, a ventilator malfunction, a major physiological change, or a knowledge deficit of a caregiver might be hard to describe. Some of these events in real life are multi-factorial, therefore the cause of an emergency needs to be assessed using the systematic approach to explore all possible problems.

This training module is helpful to those clinicians and caregivers who use similar models of ventilators, uncuffed trach tube and pressure control mode. As many clinicians are using volume control, cuffed trach tube and a myriad of ventilators in the home, the educational information might not be extrapolated for their patients. Also, this educational module was developed by a single institution only. The recommendations were based on personal experience and not a randomized research study.

We have identified through a group of experts the most common types of tracheostomy and ventilator emergencies for HMV children in the home, and we developed a training module on emergency responses for caregivers. The clinicians offered the insight that when working with HMV children, one needs to anticipate the emergencies to include the concept of a ventilator management in a systematic manner. This includes the risk factors from the airway, the ventilator, the circuits, and supporting equipment like the battery and oxygen. Lastly, the underlining medical condition of the child and any major deviation from its baseline could pose an emergent situation must be included in the systematic assessment of the HMV emergency. We speculate that learning the risk factors and their proper responses in each scenario would mitigate harm in HMV management.

The Home Mechanical Ventilation (HMV) Emergency Curriculum is the ostensible result of an amazing group of professionals and parents who recognized the need for pediatric emergency guidance in the home. This HMV Advisory Panel shared their valuable insight and experience and created an incredible educational tool for parents and care-providers. No words can express our gratitude and appreciation of time into this project.

Amanda Wright, Ana Semerijian, Bill Burnham, Chris Negrete, Cyndy Miller, Danny Mascari, Denise Hartsell, Denise Ordonez, Diana Campos, Diana Guzman, Gabriel Costea, Henry Leung, Jenny Ryan, Josephine Ellashek, Jummy Ojute, Lindsay Barr, Lynnda Kroy, Maribel Vera, Michelle Hays, Nicole Rodriguez, Ramon Franco, Randy Soriano, Robyn Bennett, Sally Ward, Sheila Kun, Sunny Henderson, Terin Harris and Thomas Keens.

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