Abstract
Children and youth with special healthcare needs (CYSHCN) are at disproportionate risk of harm from widespread disasters and from life-safety emergencies. These risks may be mitigated by providing preparedness training and support to family caregivers. We conducted a scoping review to identify and map the scholarly literature on home-focused preparedness of families with CYSHCN. Our search strategy yielded 22 relevant articles; 13 pertained to life-safety emergencies, 5 centered on widespread disasters, and 4 addressed preparedness on multiple scales. Approaches to measure or attempt to improve emergency preparedness levels in CYSHCN and their families were diverse and included interviews and focus groups; didactic, video-based, or side-by-side instruction; simulated medical crises; and provisioning of emergency kits. For the studies that involved an intervention (n=15, 68%), several proxy indicators of preparedness were used, including caregiver knowledge, skill, or comfort level with managing emergencies that could affect their CYSHCN; completion of preparedness tasks; and reduction in adverse clinical outcomes. Despite the varied methodologies, prevailing themes in the studies were that family caregivers of CYSHCN felt underprepared for emergencies and disasters, desired training to improve their preparedness at home, and benefited from such trainings, at least in the short term, across domains of self-efficacy, skill, and health outcomes of their CYSHCN. Although more research is needed to compare preparedness interventions and evaluate the durability of these interventions in larger, more diverse samples of CYSHCN and their families, our findings support incorporating preparedness training into preventive care encounters and the hospital-to-home transition.
Introduction
Disasters and emergencies involving extended power outages, evacuation or shelter-in-place orders, or healthcare system breakdowns pose risks to the health and safety of everyone 1 ; however, these events disproportionately affect children and youth with special healthcare needs (CYSHCN)2-4 who have “chronic physical, developmental, behavioral, or emotional conditions” 5 that require enhanced healthcare services and supports. In the United States, an estimated 14.1 million CYSHCN under age 18 live in nearly 30% of households.6,7 Children with medical complexity are a growing subpopulation of CYSHCN,8,9 with (1) intensive hospital- or community-based service needs; (2) reliance on technology, polypharmacy, or home/congregate care; (3) risk of frequent hospitalization; and (4) elevated need for care coordination.10,11 Children with medical complexity account for less than 1% of US children8,11 and more than 30% of pediatric healthcare spending.12,13
CYSHCN are more likely than other children to be harmed by large-scale disasters (eg, severe weather, earthquakes, wildfires, infectious disease outbreaks) and are less likely to receive timely medical and rehabilitative services in the disaster recovery period.8,14-18 Moreover, CYSHCN require more resource-intensive care from first responders and emergency service providers,2,3,9,19,20 underscoring the importance of planning for their needs in advance of these events. CYSHCN—and especially children with medical complexity—also experience life-safety emergencies at a higher rate than other children, which has been ascribed, in part, to insufficient preparation of family caregivers to prevent or manage these emergencies in the home.21-26 Among those at highest risk are children and youth with a tracheostomy, who require around-the-clock critical care.21,27-30 From 2015 to 2018, a cohort of pediatric patients with tracheostomy being cared for at home were found to have a 25% mortality rate. 23 Other authors reported similar death rates in children with long-term mechanical ventilation via tracheostomy and have partly attributed these deaths to inadequate training of caregivers in the home.31,32 Correspondingly, family caregivers have voiced the need for better services and supports to help them anticipate and respond to any hazard scenario that could befall their CYSHCN, ranging from medical emergencies21,24 to large-scale disasters.3,33
Emergency preparedness activities can mitigate the harmful consequences of community-wide disasters, household emergencies, and personal medical crises.1,34 The American Thoracic Society recommends that families of children on mechanical ventilatory assistance receive preparedness education and training both for personal catastrophic events and community-level disasters. 35 Guidance from the Federal Emergency Management Agency suggests that individuals take responsibility for all-hazards preparedness in their homes, a key component of which is the assembly and maintenance of an emergency kit with enough supplies to sustain all family members for at least 72 hours without external support. 36 For households with CYSHCN, the American Academy of Pediatrics also recommends maintaining a current emergency information form to notify emergency care providers about the child's condition and medical needs.37,38
Despite these recommendations, the findings of numerous studies are that US households are underprepared for disasters19,39,40 and that families of CYSHCN are no more prepared than other sociodemographic groups, despite their greater risk of harm.3,4,41-46 Results of a survey of 314 caregivers of children with developmental disabilities indicated that 43% had emergency supplies prepared for sheltering in place, 86% lacked an emergency kit for an evacuation event, and 91% had not practiced an emergency plan. 3 Nevertheless, the respondents expressed a strong desire to receive emergency training, with 86% rating it as “important” or “very important.” 3
A robust body of literature has addressed disaster preparedness in adults—including older adults with disabilities or chronic conditions47,48—whereas emergency preparedness of families of CYSHCN has been less examined.3,14 Given the potential utility of home-focused activities for improving the all-hazards preparedness of families of CYSHCN, we conducted a scoping review to determine which approaches for measuring and attempting to improve preparedness have been applied, for which CYSHCN, and with what impact.49,50
Methods
We conducted a search of published literature to identify articles that fit 4 eligibility criteria: (1) centered on or included a substudy of family caregivers of CYSHCN or the CYSHCN themselves; (2) involved preparedness, planning, or readiness for emergencies or disasters; (3) addressed steps for managing or responding to these events in the home (eg, preparing an emergency evacuation kit, conducting a home safety/readiness assessment, planning for the transition from the hospital to the home); and (4) published in English. We broadly defined “home-focused emergency preparedness” to include community-level disasters (eg, severe weather event), household emergencies (eg, prolonged power failure or fire), and personal medical crises (eg, cardiac arrest associated with a complex medical condition). No restrictions on publication date or country were imposed.
From March 23, 2022, through April 8, 2022, we searched citations across 7 indexed databases: MEDLINE (PubMed), CINAHL (EBSCO), PsycINFO and ERIC (ProQuest), Scopus and Embase (Elsevier), and Web of Science (Clarivate). The search strategies used to query the databases were developed iteratively using a previously described scoping strategy 33 in consultation with a health sciences librarian and are shown in Supplemental Table (www.liebertpub.com/doi/suppl/10.1089/hs.2022.0119). Uncertainties or disagreements on eligibility were resolved through discussions among the study team.
The initial database search retrieved 1,431 articles (Figure). After removing duplicates, we screened the remaining 1,032 articles in 2 stages. We first reviewed the titles and abstracts for adherence to the 4 eligibility criteria, which resulted in 55 eligible articles. The study team then conducted full-text readings of the eligible articles against these same criteria, and 21 articles were retained. Inspection of the reference lists of these articles yielded 1 additional article for inclusion, resulting in a final sample of 22.
Flow diagram of the search and selection process. Abbreviations: CINAHL, Cumulative Index to Nursing and Allied Health Literature; ERIC, Education Resources Information Center.
We analyzed the selected articles with a focus on the types of preparedness assessments or interventions used, the range of pediatric diagnoses considered, and the preparedness indicators applied to represent baseline preparedness levels or changes in preparedness.
Results
The 22 included articles were published between 1998 and 2022, with 86% (n=19) published within the past decade. The studies primarily were set in the United States, with 18 single-center studies conducted in 12 states, 1 study spanning Alabama and Florida, and 1 nationwide online survey. One study involved a web survey that was disseminated internationally, and 1 was based in the United Kingdom. Interventions to improve preparedness of family caregivers were delivered primarily in hospitals and specialty clinics but also in homes and classrooms. Sample sizes ranged from a single patient to a survey of 314 participants; 1 study did not specify the sample size.
Thirteen (59%) of the studies addressed home-based preparedness for life-safety emergencies.21,23-25,28,51-58 Five (23%) described preparedness of families of CYSHCN for large-scale disasters, with a focus on prolonged power outages.3,42,43,59,60 The remaining 4 (18%) incorporated preparedness elements for both widespread and individual-level emergencies.4,44,61,62
The most common pediatric subgroup addressed was tracheostomy with or without mechanical ventilation, accounting for 10 of the 22 articles (45%). The other studies centered on generalized special needs (n=4), complex or chronic conditions (n=2), reliance on powered medical technology (ie, technoelectric dependence; n=2), asthma (n=2), developmental disabilities (n=1), and use of a ventricular assist device (n=1).
Preparedness Indicators and Interventions
We noted 3 common approaches by which authors of the selected articles addressed preparedness: virtual or in-person focus groups, surveys, or interviews (n=16 studies); didactic methods or self-led learning from provided materials (n=13); and hands-on or interactive training, such as through clinical simulation (n=11). (Some studies employed multiple methods.) We categorized 15 of the 22 studies (68%) as primarily interventional, in which the investigators attempted to improve emergency preparedness of family caregivers through education, training, or other supports. We classified the other 7 studies (32%) as observational, in which the researchers sought to measure or assess home-focused preparedness but did not try to improve the participants' preparedness. We decided that the scoping review should include both interventional and observational studies because of their shared methods of evaluating preparedness (eg, surveys or interviews were applied in 10 interventional studies and 6 observational studies) and the crosscutting themes that we identified.
Of the 15 interventional studies, 3 primary indicators of preparedness were noted: demonstration of improved preparedness capacity or skill (n=9), attestation of preparedness tasks completed or report of changes in feelings of preparedness self-efficacy (n=15), and postintervention monitoring of health outcomes in the included children and youth (n=7). Nearly all of the observational studies applied a survey instrument or semistructured interview to assess preparedness; often, these studies included a qualitative component. Table 1 summarizes the 15 interventional studies and Table 2 summarizes the 7 observational studies.
Summary of 15 Interventional Studies Reviewed, by Diagnostic Subgroup
The teach-back method is an interactive training in which the learner has a concept shown or described to them, and they, in turn, show or describe it back to the trainer to demonstrate retention of the concept.
Abbreviations: CPR, cardiopulmonary resuscitation; ED, emergency department; NA, not applicable; PICU, pediatric intensive care unit.
Summary of 7 Observational Studies Reviewed, by Diagnostic Subgroup.
Study Themes
Although the studies identified for this scoping review varied in design, preparedness indicator used, and scale or type of emergency considered, overarching themes included that caregivers (1) were underprepared for emergencies that could affect their CYSHCN, (2) expressed the need for training and support to become better prepared, and (3) showed improvements in preparedness after participating in an intervention.
Need for Preparedness Training
In a commentary on a multidisciplinary healthcare transition program serving youth with chronic conditions during the COVID-19 pandemic, Langmaid et al 62 called for prioritizing emergency planning. Yet, findings from many of the studies we reviewed showed unmet preparedness needs and generally low preparedness. In observational studies addressing life-safety preparedness in the hospital-to-home transition, caregivers indicated that crisis training, when received, was idealized 21 and did not adequately prepare them to handle life-safety emergencies. 24 In a study of disaster preparedness of families of CYSHCN (n=145), the researchers found few preparedness tasks completed overall (mean, 1.16 tasks completed of a possible 5), 42 and in an online survey of self-reported emergency preparedness, caregivers of children with developmental disabilities (n=314) had a mean score of 2.7 on a Likert scale from 1 (very unprepared) to 5 (very prepared). 3 Among 50 families with technology-reliant CYSHCN, only about one-fifth of caregivers had a car power inverter for backup household electricity, and one-fourth had an electrical generator. 4
Caregivers also tended to overestimate their level of preparedness. This was evident in studies addressing preparedness for prolonged power failure among families of children with reliance on life-sustaining technology, 4 for fire safety among children with special needs, 44 and for all-hazards preparedness among children with developmental disabilities. 3 Misjudging one's preparedness level was a related theme. Caregivers of CYSHCN who relied on powered medical equipment often misunderstood the capacity or operating requirements of their child's backup power devices; 40% believed their child's equipment could function continuously on battery power for more than 5 hours, which the authors asserted was overly optimistic. 4 In other studies, caregivers appeared to be impacted by new awareness about preparedness brought about by an intervention. Prickett et al 53 identified a subset of caregivers of children with tracheostomy who self-indicated that they were highly confident in their ability to manage emergencies at baseline but went on to report lower confidence with handling emergencies after undergoing simulation-based training.
No subgroup of CYSHCN caregivers consistently emerged as more or less prepared than others. Wolf-Fordham et al 3 found that families of children with multiple, complex developmental, medical, sensory, or physical needs were more prepared in certain domains (ie, having a written emergency information form and an evacuation kit) than were families of children with fewer co-occurring health conditions. However, Baker and Baker 42 found no difference in preparedness when comparing families according to caregiver-perceived disaster risk level or type/complexity of the CYSHCN's medical need (ie, multiple medical needs or use of daily medication, nebulizer, home ventilator, or wheelchair). Results of another study 59 that compared preparedness tasks completed by place of residence (ie, Alabama vs Florida, a proxy for being more affected by tornados vs hurricanes, respectively) also indicated no difference between the groups at baseline and similar improvement in both groups after an educational intervention.
Benefits of Preparedness Intervention
In many of the studies, caregivers who participated in interventions had statistically significant improvements in preparedness indicators, including (1) increased preparedness tasks completed43,44,54,59,60; (2) improved comfort, confidence, skill, or self-efficacy with managing emergencies23,25,51,53; and (3) decreased rate of emergency department visits or hospital readmissions for their CYSHCN.54,58 Kohn et al 28 found a lower rate of tracheostomy-related adverse events among patients who received kits containing tracheostomy supplies for emergency evacuation vs those who did not (22% vs 35%; 22 months of follow-up), but this did not constitute a statistically significant difference. Similarly, McCoy et al 23 and Thrasher et al 55 found nonsignificant trends toward lower rates of readmission associated with participation in tracheostomy and ventilator care simulation programs.
Several interventional studies reported equivocal findings. Baker et al 43 found improved preparedness metrics in caregivers who received an educational intervention, but no additional preparedness gains when a disaster kit was also given. Gillen and Morris 60 determined that 38% (19 out of 50) of technology-dependent children whose caregivers received preparedness training for power failure were readmitted to the pediatric intensive care unit (PICU) during the 18-month study, and those who were readmitted did not differ significantly from those who were not readmitted with respect to preparedness tasks completed. Shani et al 54 found no significant relationship between completing 4 or more allergy management tasks versus 3 or fewer tasks with regard to asthma control.
Durability and Loss to Follow-Up
The pretest–posttest intervals in the interventional studies were generally short, limiting conclusions about the durability of any intervention. When simulation-based training was applied, retention of skills was usually assessed the same day as the intervention, typically with a written or demonstrative test or debriefing session.23,51,53,55-57 In one study, participants completed a multiweek series of increasingly challenging simulations, with same-day skill demonstrations. 25 Effects of a fire-safety intervention were evaluated at 2 weeks, 44 and in 2 studies involving disaster preparedness tasks completed after an educational intervention, investigators followed up with participants at 30 to 60 days.43,59
Some of the studies monitored preparedness indicators at lengthier intervals. In a study of disaster preparedness among families with technology-reliant children admitted to an urban PICU, in which counseling was targeted to preparedness deficiencies identified at baseline, completion of preparedness tasks was retested at 2 weeks and 6 months and was found to be significantly improved at both time points. 60 Shani et al 54 assessed the effects of home visits by peer educators and mitigation of indoor and outdoor asthma triggers on adoption of asthma-friendly behaviors and disease control. These authors followed up with phone surveys at 2 weeks and 3 months and with a home assessment at 6 months and found that exacerbations and disease control improved, especially for patients with the most severe disease at baseline. 54 Volsko 58 monitored the health and cost impacts of individualized outpatient-based asthma interventions conducted by a multidisciplinary team over a 7-month period, noting significant decreases in emergency department and inpatients visits and corresponding expenses. When postintervention adverse outcomes were monitored (eg, hospital readmissions, emergency department visits, tracheostomy-related emergencies), the follow-up intervals varied, with some shorter intervals of 7 days 55 or 90 days23,54 and some longer, at 18 months 60 or 22 months. 28
The authors of 5 of the studies noted substantial loss to follow-up. Shani et al 54 enrolled 132 children with asthma in their study but retained the families of only 80 children (61%) at the 6-month follow-up assessment. A similar 6-month response rate (58%) was reported by Gillen and Morris 60 in their study of technology-dependent children. Following an educational intervention on disaster preparedness for families with CYSHCN, Baker et al 43 were able to reach only about half of the respondents at 30 to 45 days of follow-up (238 completed the pretest, 121 completed the posttest); a comparable follow-up retention (49%) was achieved in a subsequent, similarly designed study from this research group. 59 Tofil et al 56 noted they were unable to reach one-third of the families at 3 to 6 months to request feedback on caregiver satisfaction with the simulation session.
Preparedness Through Simulation
In this scoping review, clinical simulation was a prevailing preparedness intervention for life-safety emergencies. Healthcare providers based in hospitals routinely receive critical event training by means of clinical simulation, a modality that applies adult learning theory to enhance the gain and retention of skills.21,25,56 In recent years, simulation has been evaluated as a method for training family caregivers in a setting that is controlled and forgiving but also immersive and emotionally charged; results have included increased capacity to perform maintenance- or crisis-related caregiving tasks and improved self-efficacy, comfort, and confidence.25,56,57,63,64 In their multimodal training program for families of children on ventilatory assistance, Thrasher et al 55 reported that high-fidelity simulation was the most useful component.
With 1 exception, 61 all caregivers who underwent simulation training had children with a tracheostomy. Approximately 5,000 pediatric tracheostomies are performed annually in the United States, 65 and children increasingly are undergoing this procedure for chronic indications and then transitioning to the home for long-term, skilled care.21,27,32,57 However, simulation is a promising modality for training caregivers of children with other potentially severe health conditions, including type 1 diabetes64,66 and seizure disorders, 67 and may be a worthwhile addition to the hospital-to-home preparedness curriculum for other conditions that pose risks of life-threatening complications at home, such as enteral feeding dependency 68 or ambulatory central-line placement. 69 Interestingly, Tofil et al 57 found that while 97% of family caregivers who received predischarge simulation training said they would recommend it to others, only 44% said they would welcome further simulation training for themselves. McCoy et al 23 found approximately one-third of caregivers in their study desired additional simulation scenarios. These results suggest there may be limited opportunities to deliver this type of intervention.
Discussion
CYSHCN—and especially children with medical complexity—are disproportionately at risk of life-safety emergencies and of the harmful cascading effects of widespread disasters. The findings of our scoping review suggest that caregivers of CYSHCN are underprepared for emergencies, are motivated to undergo home-focused preparedness training for disasters and emergencies of any scale, and appear to benefit from a variety of preparedness interventions on multiple outcome metrics, at least in the short term.
Suggestions for Future Research
The 22 studies shared several limiting features that present avenues for future research. The studies were uncontrolled, and participants were sampled nonrandomly, often from a single site. Nearly all the interventional studies involved a quasiexperimental design (ie, 1-group pretest–posttest), which is vulnerable to threats to internal validity and does not permit conclusions about causality. 70 Given the potential of interventions such as clinical simulation, provisioning of emergency kits, and assessments of the home to improve caregiver capacity to keep their CYSHCN safe in emergencies, studies that test preparedness interventions in larger samples and compare findings across diverse pediatric diagnoses—and studies designed to compare the interventions themselves—will advance our understanding of which approaches have the greatest impacts for which CYSHCN.
The studies also largely relied on caregiver-reported preparedness, which may have been affected by recall bias and social desirability bias. Moreover, the follow-up intervals were relatively short and potentially subject to selection bias from convenience sampling and from loss to follow-up, which was often substantial. Studies with longer-term monitoring are needed to assess durability of preparedness interventions. The challenge of loss to follow-up 56 may be minimized in studies designed to intervene through sustained preparedness touchpoints from a trusted information source.33,71
Additional qualitative studies of CYSHCN caregivers also are needed to inform development and piloting of other preparedness interventions. For instance, in 3 of the observational studies in this scoping review, caregivers expressed the desire for outlets in which to connect and share experiences with other families of CYSHCN.3,21,52 Facilitated peer mentoring may improve emergency preparedness among caregivers of CYSHCN, but no interventional study has addressed this, to our knowledge.
Practical Applications of the Findings
The results of this scoping review suggest that caregivers of CYSHCN desire to become better prepared and benefit from a variety of preparedness interventions. A theme identified by Amar-Dolan et al 21 was “learning as a process.” That is, caregiver preparedness training may be effective in various settings and timepoints (eg, in the PICU, in rehabilitation hospitals, or by the durable medical equipment provider in the home). In an earlier scoping review 33 and subsequent mixed-methods analysis, 71 Hipper et al sought to determine how to communicate effectively with families with CYSHCN before, during, and after widespread disasters, finding that these families consider the CYSHCN's doctor to be the primary trusted source for emergency planning. Other authors have pointed out the unique role of healthcare providers in supporting and improving emergency and disaster readiness in households with CYSHCN.16,42,44,46 Therefore, preparedness training and the provisioning of resources may best be implemented in the context of recurring, preventive medical care encounters and in the hospital-to-home transition.
Preparedness Training in Preventive Care
Incorporating preparedness into preventive care visits of CYSHCN may require additional training of physicians or partnership with durable medical equipment providers. For instance, families with children who rely on life-sustaining technology need technical information about home electricity and battery capacity. 4 This reinforces the need for a medical home, a model of coordinated, comprehensive, family-centered primary healthcare, where ongoing discussions on planning for disasters and emergencies and referrals to local preparedness resources can occur. 72 Notably, findings from a nationally representative survey suggest that medical home attainment is distributed unequally among children with vs without special healthcare needs, with only 43% of CYSHCN and 50% of non-CYSHCN meeting all criteria for having a medical home. 73
Preparedness as a Standard Component of the Hospital-to-Home Transition
In their grounded theory study, McDonald et al 29 described the “wayfinding” model, involving early and intense support from healthcare providers and gradual development of the self-reliant caregiver. For children with the greatest medical needs, the period after hospital discharge tends to involve frequent calls to the nurse, unplanned specialist appointments, and complications resulting in emergency department visits or hospitalizations23,25; these outcomes may be avoided by incorporating preparedness training (with clinical simulation, when possible) into the standard discharge curriculum. Supporting this, Gillen and Morris 60 found that disaster preparedness education, delivered at the time of discharge from the PICU, resulted in a significant, sustained improvement in preparedness checklist items completed among families of children with technology dependence. Benscoter et al 27 advised that families of infants with a tracheostomy receive a comprehensive, all-hazards home-readiness assessment before hospital discharge, with inspection of the home by durable medical equipment providers and linkage to resources by a social work team. Findings of our scoping review suggest that such an intervention may be beneficial to families of CYSHCN more generally.
Limitations
This scoping review had several limitations. Our broad definition of home-focused emergency preparedness of families with CYSHCN yielded a sample of articles with substantial heterogeneity in study design, sample size, and diagnostic category that did not permit direct comparisons of preparedness indicators or of intervention effectiveness. Additionally, although our search strategy involved 7 indexed databases covering a broad range of topic areas in the health sciences, we recognize that we included only English-language articles and did not carry out a separate search of the gray literature. As such, we may have missed some relevant material.
Conclusion
We performed a scoping review to characterize the breadth, density, and knowledge gaps in the literature pertaining to home-focused preparedness of CYSHCN and their families. Our broad eligibility criteria captured diverse preparedness assessments and interventions and a variety of outcome metrics. Conspicuous themes were that family caregivers of CYSHCN desire preparedness training and benefit across numerous domains when this training is received. For children most at risk of a medical emergency, simulation-based preparedness training of caregivers is generally well received and effective at improving skill and confidence; this tool may have utility for diverse pediatric conditions. The CYSHCN's medical team and the medical home are uniquely positioned to support preparedness attainment. The results of this review support the expansion of home-focused preparedness interventions to more families with CYSHCN while also underscoring the need for further research to characterize the comparative effectiveness, durability, and real-world value of these interventions.
Footnotes
Acknowledgments
The authors would like to acknowledge the support of Robin Soler and Mary Leinhos, both of CDC Center for Preparedness and Response; Kevin Chatham-Stephens, of CDC-National Center on Birth Defects and Developmental Disabilities; Keri Lubell and Rebecca Hall, both of CDC Center for Preparedness and Response; and Allison Wray, of CDC-National Center on Birth Defects and Developmental Disabilities. The authors also thank Renee Davis, MD, MPH, and Joanna M. Taliano, librarian for the CDC, for their invaluable advice on the database search strategy. The research reported in this manuscript has been funded by the US CDC, an Agency of the Department of Health and Human Services, under CDC contract #75D30118C03584: Home Assessments for Patients and Families with Special Health Care Needs: Developing Tools, Communication Strategies, and Standards (PI: Renee Turchi, MD, MPH). The ideas expressed in the articles are those of the authors and do not necessarily reflect the official position of the CDC.
References
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
