Simulation-Based Discharge Education Program for Caregivers of Children With Tracheostomies

Our study site is a children’s hospital within a tertiary academic medical center located in an urban metropolitan area in the Northeastern United States. Approximately 12 to 15 new tracheostomies are placed by our pediatric otolaryngologists each year in patients up to 21 years of age. Caregiver education in tracheostomy care has previously been provided by the patient’s bedside nurse in the pediatric unit and NICUs. Nurses typically undergo tracheostomy care training only during nursing orientation without subsequent reinforcement in their own knowledge and skills. This may result in inconsistencies in bedside care. In addition, our patients are usually discharged to chronic care facilities to improve caregivers’ comfort in caring for their children’s tracheostomies over time. We therefore identified a need for caregivers to gain adequate skills before discharge to transition successfully from hospital to home.

An interdisciplinary team including simulation specialists, pediatric otolaryngologists, pediatric pulmonologists, nurses, discharge coordinators, social workers, and Family Advisory Council (FAC) members was established, and this team reviewed current tracheostomy care-related practices and needs. FAC members at our institution reported limitations in the ability of caregivers to successfully learn tracheostomy care at the bedside due to the lack of standardized nursing teaching practices. Caregivers also reported apprehension about hurting their children during training, concerns that were rarely addressed. These findings informed the structure and content of our novel program.

As a result, the Simulation-based Discharge Program (SDP) was designed as a caregiver education program that used SBE to teach basic skills relating to routine and emergency tracheostomy care. The program consisted of 2 components:

1. a single SBE session; and

2. peer-to-peer support by family advisors during and for 6 months after the SBE session.

Referral to SDP was made by the patient’s care team when the decision was made for initial tracheostomy placement. Our program also accepted referrals for caregivers of patients with existing tracheostomies who were admitted in our hospital. A time line of the caregivers’ program experience is provided in Fig 1.

A single SBE session was arranged with the caregivers 1 week after placement to coincide with the first tracheostomy tube change, after which caregivers could be involved in the bedside care of their child’s tracheostomy. For caregivers of children with existing tracheostomies, the SBE session occurred at some point during the hospital admission. Up to 3 caregivers were present at each SBE session that usually lasted 3 hours. Caregivers practiced their skills on a high-fidelity pediatric patient simulator (Gaumard HAL S3004, Miami, FL) that could breathe, cough, and gag in response to interventions and permitted cannulation with a tracheostomy tube in its neck. The tracheostomy tube model and size used in the SBE session were identical to that used by the caregivers’ child. The simulation setting was limited to equipment that was available in the home only. The session was typically held in the same inpatient unit as the patient rather than in the simulation center to reduce any unnecessary separation between the caregivers and their child. Education was provided by content experts, who were either general pediatricians or nurses with at least 3 previous SBE sessions as an educator-in-training. An in-person interpreter was provided for caregivers whose primary language was not English.

Peer-to-peer support was provided by a member of FAC acting as the family’s advisor during the SBE session. Family advisors were volunteers, whose children have or have had medical devices. These volunteers received training by social workers and child life specialists on how to provide appropriate peer-to-peer support. Family advisors ensured the education had minimal technical jargon, acknowledged anxieties, addressed questions about care and life in the home environment, and advocated for the caregivers during the session.

The educational curriculum consisted of 4 core skills, including stoma and skin care, tracheostomy tie change, suctioning, and tracheostomy tube change. Emergency care skills included managing accidental decannulation, troubleshooting difficult reinsertion of the tracheostomy tube, learning to use a self-inflating manual resuscitator bag, and understanding the “red flag” situations that require medical attention. All content was detailed in an educational guide adhering to our institutional standard of care with step-by-step instructions at a fifth-grade reading level. The guide was provided to the caregivers at the start of each session and worked through at a pace controlled by the caregivers. Enhanced teach-back was used, and caregivers were asked to repeatedly demonstrate (and not just describe) the skill taught until they could perform the skill independently and correctly. Caregivers continued to receive all other institution-specific education related to tracheostomy care.

In this pilot study, we used a pretest-posttest design and included a consecutive convenience sample composed of caregivers of children with new or existing tracheostomies at our institution referred to SDP from August 2018 to November 2019. The inclusion criteria included caregivers of patients <21 years of age who received a new tracheostomy or were admitted with an existing tracheostomy. Caregivers who did not consent to our study were excluded from data collection but were still provided the same SBE session.

Two instruments were specifically designed and used in this study. The first instrument was a survey that subjectively evaluated caregivers’ self-reported perception of their ability to perform care at home. It consisted of 15 statements in which caregivers were asked to respond in agreement or disagreement on a 5-level Likert scale. Five questions focused on caregivers’ comfort in performing the required care (“I feel comfortable…”). The remaining 11 questions assessed caregivers’ confidence in their knowledge relating to tracheostomy care (“I know how/when…”). The same survey was given immediately before and after the SBE session. Seven demographic questions also accompanied the first survey.

A content expert used an objective skills assessment checklist as our second instrument to evaluate each caregiver’s ability to provide care. The checklist was composed of 27 key skills identified from our education guide divided into 7 care sections. Six sections were based on routine tracheostomy care, including equipment set up (2 skills), skin care (2 skills), tie change (3 skills), sterile gloving (1 skill), suctioning (5 skills), and tracheostomy tube change (13 skills). One section addressed an emergency skill, namely the use of a self-inflating manual resuscitator bag (1 skill). Each skill item received a score of 2 for “done well,” 1 for “partly done,” and 0 for “not done.” Scores were compared pre- and post-SBE by computing a total score for each section by adding the scores of all the skills in each section and for the assessment in total, which was then calculated as percentage of the maximum score for each care section and the assessment in total. We also reported the percentage of subjects who were able to score 100% in each care section and in aggregate. The interrater reliability of the checklist instrument by using Cohen’s κ was 0.82 on the basis of a pilot with 3 independent raters.

Statistical analysis was performed by using paired samples t tests to compare between pre- and post-SBE results from the survey and checklist individually and in aggregate. An aggregated comparison was tested for internal consistency reliability by using Cronbach’s α. Spearman rank-order correlations (nonparametric) were performed to assess associations between survey and checklist results.

The study was reviewed and approved by our institutional review board, and the study data were collected and managed by using Research Electronic Data Capture hosted at our institution. Informed consent was obtained from each participating caregiver before study enrollment.

Over 15 months, 25 caregivers of 15 children with tracheostomies were consecutively recruited into our program. No caregiver declined participation in the study, but 1 caregiver had an incomplete evaluation despite numerous follow-ups and was removed from the analysis. The demographics data of the 24 caregivers are presented in Table 1. Of the 15 patients who were part of our program, 9 (60%) were discharged to pediatric long-term care facilities, whereas 4 (27%) were discharged from the hospital. The remaining 2 (13%) were transferred to another acute care hospital for specialized care.

Aggregate scores were calculated for the pre-SBE and post-SBE surveys (Fig 2), given evidence of excellent internal consistency (Cronbach’s α = 0.95 and 0.93, respectively) for these measures. Comparing the survey aggregates, post-SBE scores were significantly higher than pre-SBE scores (P < .001). Survey item analyses also indicated significant improvements for each of the 15 items (P < .001) (Fig 3).

Aggregate scores were calculated for the pre-SBE and post-SBE skill checklists (Fig 2). These were calculated in the interest of summarizing overall performance of participants although the internal consistency was not strong (Cronbach’s α = 0.62 and 0.58, respectively). Because the items had a restricted range, this level of item-total correlation was not surprising. The aggregates indicated significant improvement in the number of skills that caregivers performed competently after SBE (P < .001). The pre-SBE and post-SBE checklist scores correlated moderately and positively (r [24] = 0.57, P < .01), suggesting most caregivers showed improvement in skills and provided evidence of test-retest reliability for the checklist aggregate.

When the results were analyzed by care sections (Fig 4), caregivers improved significantly in 6 of the 7 sections post-SBE compared with pre-SBE. In the post-SBE assessment, 21 of 24 (88%) caregivers completed all checklist items for tracheostomy tie change. In contrast, only 7 of 24 (29%) demonstrated correctly all 13 skills needed to complete a tracheostomy tube change. Overall, only 4 of 24 (17%) caregivers completed all 27 skills competently.

There were no significant correlations between caregivers’ self-reported knowledge and confidence and objective assessment of tracheostomy care skills, with poor strength of association pre-SBE (ρ = 0.13, P = .54) and post-SBE (ρ = 0.14, P = .51).

To our knowledge, our program was the first to focus on SBE of tracheostomy care skills and evaluate self-reported and objective assessment of caregiver skills performance. Our analysis revealed that a single session of SBE resulted in universally significant improvements in caregivers’ self-reported comfort and confidence in their knowledge relating to tracheostomy care, as well as in the objective assessment of their tracheostomy care skills.

SDP was designed to directly address recent key findings in the literature that studied caregivers’ perceptions, needs, and preferences during the transition of care from hospital to home.^14,15,22,23  Caregivers prefer that skills are taught more explicitly through structured hands-on practice rather than passive observation.^14,16  Caregivers also prefer written instructions listing “red flag” symptoms and clear contingency plan information.^16,22  Furthermore, caregivers value peer support from other caregivers of children with similar conditions in providing practical advice and community support.^14,16  The design of our program directly addressed these caregivers’ needs and preferences.

In the literature, SBE for caregivers had already been successfully implemented for post-NICU care,²⁴  seizures,²⁵  and diabetes education.²⁶  Although SBE had been adopted for caregivers on tracheostomy care, these programs focused primarily on scenarios involving emergencies.^27,28  Our program was novel in part because it focused on the acquisition of basic skills in tracheostomy care.

Quality tracheostomy care could prevent tracheostomy-related complications that account for a significant proportion of hospitalization and lifetime health care use for children with tracheostomies. Tracheostomy stoma infections, which may be prevented by meticulous cleaning of the stoma and sterile suctioning technique, account for 28.9% of these complications.⁸  This was addressed by our program’s focus on proper cleaning technique around the stoma, with an improvement in objectively measured skill score from 69% to 94% after an SBE session. Our program’s focus on sterile technique, especially proper sterile gloving, was also a key skill successfully taught through SBE. Furthermore, in a national quality survey distributed to the American Academy of Otolaryngology–Head and Neck Surgery members to gather tracheostomy-related catastrophic events, members described 88of 405 events that were directly associated with potentially correctable tracheostomy care issues.⁹  Some of these catastrophic events occurred because of an inability to reinsert a tracheostomy tube after accidental decannulation. These events could be potentially prevented by our program’s focus on repeated tube reinsertion practice and proper tube bracing skill during care to reduce the risk of accidental decannulation. Our study revealed that this complex but critical skill is one of the hardest to learn, with only 29% of caregivers demonstrating it perfectly after a single SBE session. The focus on mastering core routine care that may prevent complications may therefore be more important than scenario-based learning that focuses on dealing with complications when they arise. Mastery of basic skills may also form the building blocks of an effective response in an emergency scenario.

When a checklist was used to evaluate the ability of caregivers to correctly perform tracheostomy care skills, only 17% were able to perform 100% of the skills correctly after 1 session of SBE. Post-SBE mean checklist scores of 95% suggested that the majority of caregivers only missed 1 or 2 skills after SBE, but the most challenging skill to learn was also one of the most critical ones. In tracheostomy tube changes, the poorest performance stemmed from forgetting to remove the obturator after the new tracheostomy tube was inserted, a potentially life-threatening mistake. This suggested that, whereas SBE was effective at improving caregivers’ performance of tracheostomy care skills, >1 session may potentially be needed to ensure competency before discharge. Consistent teaching practices at the bedside may also assist in the acquisition of skills.

Implementation of an SBE program may help enable children with tracheostomies to be discharged from the hospital rather than to a long-term care facility. Although our sample size was small, SDP had enabled the family of one of our patients to sway the clinical disposition from a long-term care facility to directly home. Our institution has a much higher rate of disposition to a long-term care facility (60%) compared with other institutions, even when accounting for regional variations in the Northeast (33.6%).²⁹  The ability for institutions to provide adequate education may be one of the barriers for children with tracheostomies to be discharged from the hospital rather than a long-term care facility.²⁹  There are significant cost savings for children with tracheostomies to be cared for at home, with savings from $63 000 (spontaneously breathing) to $109 000 (with mechanical ventilation) per annum.³⁰  The significant additional resources spent on long-term care facilities have been revealed to have no effect on readmission rates.³¹  Hence, SBE programs focused on caregivers’ education of tracheostomy skills may be an important part of the transition from hospital to home with potential cost savings for our health care system.

Our study was limited by a relatively small sample size from a single center in the Northeastern United States. Generalizability to other locations and devices will need further study. This study was based on a quasi-experimental design, and causality could not be claimed. Given that the majority of the patients in our study were discharged to long-term care facilities, this may have affected the caregivers’ self-reported results because further care and education were expected at the long-term care facility.

Our evaluation was limited to immediately after SBE, and the long-term effects on our measures were not studied. We also identified that a single SBE was not sufficient to ensure competency in all 27 skills needed for tracheostomy care, and additional SBE sessions may be needed specifically, but not limited to tube dislodgement.

The impact of the FAC in our program through peer-to-peer support was not studied. We did not assess caregivers’ perception of the presence of the FAC volunteer during the SBE session. The use and value of the continued peer-to-peer support system over 6 months after the SBE session will also need to be evaluated as part of a longer-term study.

An SBE program was designed, implemented, and evaluated as a pilot study for caregivers of children with tracheostomies focused on the acquisition of basic skills in routine and emergency tracheostomy care. Our program revealed significant enhancement in caregivers’ self-reported comfort in performing care and confidence in knowledge relating to care as well as their practical ability in performing care of their child’s tracheostomy.

In future studies, researchers will need to focus on the long-term effects of SBE, the impact of peer-to-peer support, and the need for additional SBE sessions to achieve skills competency. A larger multicenter study will also allow us to study the implications of SBE on long-term outcomes, such as complications and health care reutilization.

We thank Gerald M. Loughlin, MD, professor of pediatrics, former Weill Cornell Medicine chair of pediatrics, for his pioneering vision and tireless support of the simulation-based discharge program.