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Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear

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Title: Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear
Language: English
Authors: Sarah A. Sobotka (ORCID 0000-0001-7352-2043)
Source: Journal of Developmental and Physical Disabilities. 2025 37(1):185-197.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 13
Publication Date: 2025
Sponsoring Agency: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (DHHS/NIH)
Health Resources and Services Administration (HRSA) (DHHS), Maternal and Child Health Bureau (MCHB)
Contract Number: K23HD097276
T73MC11047
Document Type: Journal Articles
Reports - Research
Descriptors: Child Health, Special Health Problems, Family Environment, Parent Role, Mothers, Safety, Labor Supply, Labor Needs, Caregiver Role, Nurses, Health Services, Access to Health Care, Home Programs, Mother Attitudes, Parents as Teachers, Students with Disabilities
DOI: 10.1007/s10882-023-09936-2
ISSN: 1056-263X
1573-3580
Abstract: Children with invasive mechanical ventilation (IMV)(ventilation delivered through an endotracheal tube), often require 24/7 monitoring and care by skilled caregivers in order to stay safely within the home environment. Practice standards recommend skilled in-home nursing to maintain safe monitoring practices. However, across the country, a lack of home health nurses trained to care for children with IMV threatens the safety of this high-risk population. Despite this shortage, the vast majority of children with IMV do live at home. With great personal sacrifice, health system deficiencies are filled by parents, primarily mothers, in their roles as parent, primary nurse, care coordinator, therapist, educator, and advocate, and thus avoid readmissions and health system crises. Their contribution to fill health system gaps, by necessity, is often in contradiction to safe work hour recommendations for healthcare workers. These magic mothers and fathers make potential crises "disappear" out of sheer grit and determination to keep their children home. The long-term impacts of health service gaps on family systems must be considered and innovative solutions enacted to support these vulnerable children and families.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1458554
Database: ERIC
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  Value: <anid>AN0182471421;jdp01feb.25;2025Jan29.03:56;v2.2.500</anid> <title id="AN0182471421-1">Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear </title> <p>Children with invasive mechanical ventilation (IMV)(ventilation delivered through an endotracheal tube), often require 24/7 monitoring and care by skilled caregivers in order to stay safely within the home environment. Practice standards recommend skilled in-home nursing to maintain safe monitoring practices. However, across the country, a lack of home health nurses trained to care for children with IMV threatens the safety of this high-risk population. Despite this shortage, the vast majority of children with IMV do live at home. With great personal sacrifice, health system deficiencies are filled by parents, primarily mothers, in their roles as parent, primary nurse, care coordinator, therapist, educator, and advocate, and thus avoid readmissions and health system crises. Their contribution to fill health system gaps, by necessity, is often in contradiction to safe work hour recommendations for healthcare workers. These magic mothers and fathers make potential crises "disappear" out of sheer grit and determination to keep their children home. The long-term impacts of health service gaps on family systems must be considered and innovative solutions enacted to support these vulnerable children and families.</p> <p>Keywords: Children with medical complexity; Children with invasive ventilation; Parenting; Home nursing; Medical and Health Sciences Nursing Public Health and Health Services</p> <p>Copyright comment Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.</p> <hd id="AN0182471421-2">Introduction</hd> <p>Over the past 40 years, our legislation and healthcare systems have evolved from standards that restricted children with medical complexity (CMC) defined as those with chronic conditions, functional limitations, and high healthcare use (Cohen et al., [<reflink idref="bib10" id="ref1">10</reflink>]) to health institutions to legally mandated community-based living ("Olmstead v. L.C.," [<reflink idref="bib47" id="ref2">47</reflink>]). Experts and families overwhelmingly agree that living within the family home is where CMC ideally belong (Baker, [<reflink idref="bib4" id="ref3">4</reflink>]; Carnevale et al., [<reflink idref="bib9" id="ref4">9</reflink>]; Johnson et al., [<reflink idref="bib31" id="ref5">31</reflink>]), although in some circumstances families may elect an out-of-home placement for their child in congregate care settings (Friedman et al., [<reflink idref="bib21" id="ref6">21</reflink>], [<reflink idref="bib22" id="ref7">22</reflink>]). For CMC with skilled nursing needs, including tracheostomies, ventilators and feeding tubes, most families require the support of private-duty nursing in order to meet the practice guidelines to have an awake, trained caregiver 24 h a day (Sterni et al., [<reflink idref="bib63" id="ref8">63</reflink>]). Children with tracheostomies and ventilators are uniquely vulnerable to lapses in skilled caregiving because airway or ventilator complications and malfunctions can quickly result in catastrophic events including cardiopulmonary arrest, asphyxia, and death (Boroughs & Dougherty, [<reflink idref="bib7" id="ref9">7</reflink>]; Edwards et al., [<reflink idref="bib15" id="ref10">15</reflink>]). Therefore, it is imperative that all relative and professional caregivers are appropriately trained, and poised to be awake and attentive to provide quality support (Sterni et al., [<reflink idref="bib63" id="ref11">63</reflink>]).</p> <p>Despite the mandate of the Olmstead Act, which maintains public entities should make reasonable accommodations for community-based services ("Olmstead v. L.C.," [<reflink idref="bib47" id="ref12">47</reflink>]), gaps exist in essential home nursing services for families (Hefner & Tsai, [<reflink idref="bib24" id="ref13">24</reflink>]). At times these shortages of home health nursing result in negative health services outcomes such as prolonged initial hospitalizations (Maynard et al., [<reflink idref="bib37" id="ref14">37</reflink>]; Sobotka et al., [<reflink idref="bib54" id="ref15">54</reflink>], [<reflink idref="bib62" id="ref16">62</reflink>]) and readmissions (Sobotka, Lynch, et al., [<reflink idref="bib61" id="ref17">61</reflink>]). More often, however, the lack of community services does not result in emergent placement of the child outside of the home setting. The child is not readmitted to the hospital. The child is not moved from their family home permanently into a long-term care facility or nursing home. With the relative lack of harm, one could erroneously wonder if, perhaps, the breadth and depth of skilled home nursing services recommended by experts (generally about 16 h/day for a child with 24/7 ventilation requirements) (Sobotka, Dholakia, Berry, et al., [<reflink idref="bib57" id="ref18">57</reflink>]) might not be necessary. This is a dangerous conclusion. Rather, the costs of healthcare shortages are hidden in impacts on parental sleep, employment, and overall well-being. For CMC with home nursing needs, parents- primarily mothers- fill gaps in health system deficiencies with great personal sacrifice. Determined to keep their children home, these magic mothers make health system crises "disappear". Despite the gaps in the home healthcare system, the majority of even the most high need CMC, children with invasive mechanical ventilation (IMV(ventilation delivered through an endotracheal tube)), live at home.</p> <p>As a Developmental and Behavioral Pediatrician with expertise on children with medical complexity and disability, I have pursued opportunities to learn and disseminate knowledge on this niche population. In my career I have had the privilege of interviewing state care coordinators, parents, and home health nurses about the care of children with medical complexity, in particular those with ventilator dependence. I have had an intimate view into the lives of these vulnerable children from hearing their families' stories directly. Using a combination of these primary sources and peer-reviewed publications, in this article I discuss the current state of home health nursing care for children with IMV and its impact on families. Specifically, I will discuss: (<reflink idref="bib1" id="ref19">1</reflink>) Parenting children with IMV; (<reflink idref="bib2" id="ref20">2</reflink>) the current state of home healthcare for children with IMV; (<reflink idref="bib3" id="ref21">3</reflink>) the impacts of home nursing shortages on health systems and parents; and (<reflink idref="bib4" id="ref22">4</reflink>) potential future health system innovations which can create sustainable solutions for vulnerable families. The following two case vignettes describe common family circumstances I encountered, and demonstrate the profound impact of home health nursing shortages on families and parents.</p> <hd id="AN0182471421-3">Case Vignettes</hd> <p></p> <hd id="AN0182471421-4">Indefinite Night Shifts</hd> <p>Eva flicks on the coffee pot as the familiar red-light beams across the dark kitchen. It is 3am and her "shift" caring for her son is ending. She pours the cup and wakes up her husband, passing him coffee before quickly crashing into bed for a few hours of rest before their daughter awakens. Only 2 months into home life, they have still not had any nighttime nursing coverage, so each parent splits the evening care for the required 24/7 monitoring of their child with IMV while balancing sibling care. Their state care coordinator recommended, "you can always come back to the hospital if you need a break," but this is a feared and unacceptable option to the Thomas family. After 9 months in the Neonatal and Pediatric Intensive Care Units, they vowed to do anything possible to keep their son at home.</p> <hd id="AN0182471421-5">Deferred Employment</hd> <p>Leila recently moved to the region to pursue a new position in a public health department. Her husband does contract construction work and forgoes income when he must take time off. Leila was pregnant with her son at the time of the move and had planned to take the allotted 12 week leave before returning to work full time. However, when her son was born 15 weeks early, she used her maternity leave during the initial NICU course. She returned to work while he was still hospitalized. When he was discharged home 6 months later with a tracheostomy, ventilator, and feeding tube, she was unable to take additional leave because she had already exhausted her yearly FMLA allotment. In order to care for her son, Leila resigned from her job when he was discharged from the hospital. Leila is hoping to return to work once she has nursing support to care for her son while she is away, but has yet to have a steady home care team.</p> <hd id="AN0182471421-6">Parenting Children with IMV</hd> <p>Parents of healthy newborns expect that caring for their infant will include sleepless nights and fatigue, more so if simultaneously working (Gay et al., [<reflink idref="bib23" id="ref23">23</reflink>]). Many parents expect to take a break from employment for the care of a newborn, although notably the United States' family leave policies are the least supportive among wealthy nations (Bryant, [<reflink idref="bib8" id="ref24">8</reflink>]). The societal assumption is that parents are the natural caregivers for their children. However, caring for a CMC, especially those with IMV, requires extensive emergency and nursing-skills training.</p> <p>The American Thoracic Society recommends that parents of children with IMV are trained in medication administration, feeding, respiratory care, cardiopulmonary resuscitation, and home ventilator use before their child is discharged home (Sterni et al., [<reflink idref="bib63" id="ref25">63</reflink>]). These guidelines are closely followed by the vast majority of experts involved in the hospital discharge of children with IMV; in the majority of settings parents must demonstrate that they can fully care for their child before discharge (Sobotka, Dholakia, Agrawal, et al., [<reflink idref="bib56" id="ref26">56</reflink>]). For many children with neonatal respiratory disease requiring IMV, healthcare providers place incredibly high expectations on families even before the child goes home. Until parents meet these expectations, families remain split apart- a child hospitalized, often with parents missing work and sibling and family activities in order to travel and visit the hospitalized child. Many families also pursue alternative living situations in order to reside close to the hospitalized child. Family unification may depend on parent training for complex care in the home.</p> <p>Herein lies the slippery slope... where does parental expectation end and nursing expectation begin? Of course, children with IMV deserve parents prepared to intervene in the case of respiratory distress. However, how many hours should each parent be expected to perform essential skilled nursing care duties? Experts have proposed parent-informed policy changes to ensure that safe work hour restrictions are in place to protect all parties from harm (Schall et al., [<reflink idref="bib51" id="ref27">51</reflink>]). Yet, nothing exists to date.</p> <p>Although parents do not have work restrictions, for paid healthcare providers across various healthcare settings, it has been increasingly appreciated that safety is threatened when providers have insufficient sleep to perform complex patient management duties. In 2003, the Accreditation Council for Graduate Medical Education (ACGME) set limits on physician trainee work hours to an 80 h work week averaged over four weeks with a mandated 10 h of rest between shifts (Duty Hours and Patient Safety, [<reflink idref="bib13" id="ref28">13</reflink>]). For attending physicians, restrictions are not yet in place; however, some have suggested they should be (Hyman, [<reflink idref="bib28" id="ref29">28</reflink>]).</p> <p>Studies of nurses reveal similar patterns: increased errors including medication errors, needlestick injuries, and nosocomial infections when working longer shifts, overtime, or more than 40 h/week (Olds & Clarke, [<reflink idref="bib46" id="ref30">46</reflink>]; Rogers et al., [<reflink idref="bib50" id="ref31">50</reflink>]). Studies examining home health nursing have found that sleeping during shifts was a notable and not infrequent occurrence (Nageswaran & Golden, [<reflink idref="bib43" id="ref32">43</reflink>], [<reflink idref="bib44" id="ref33">44</reflink>]). Improved work hour regulations, with oversight that considers total workload across multiple agencies or organizations, are needed to ensure that designated nurses are best positioned to offer safe care with sufficient rest between in-home shifts.</p> <p>Parents who perform critical nursing duties for their children have no such work hour regulations. Trained parent caregivers also lack the support formal employment might offer: intermittent training updates, clinical supervisors, and clinical colleagues. Training and knowledge gaps have been found for home health nurses, with opportunities to improve care for children with IMV (Dougherty et al., [<reflink idref="bib12" id="ref34">12</reflink>]; Kun et al., [<reflink idref="bib35" id="ref35">35</reflink>]). For parents, although effective clinical skills training programs have been developed before discharge (High et al., [<reflink idref="bib25" id="ref36">25</reflink>]; Thrasher et al., [<reflink idref="bib64" id="ref37">64</reflink>]), there are generally no training and clinical supervision opportunities outside of the hospital for parent caregivers.</p> <p>Parents are often told by care teams that the hospital exists for emergencies if there is no one to relieve their constant caregiving. For most, the toll of a hospitalization is too high for the family and child so they do not consider this an acceptable alternative. Hospitalization places already medically vulnerable children at increased risk of infections. Pediatric intensive care unit hospitalizations are often experienced as traumatic for families (Balluffi et al., [<reflink idref="bib5" id="ref38">5</reflink>]). Parents describe anxiety over the child's separation from the primary caregiver, breakup of the family, loss of developmental opportunities, and even risk of further medical decline. Most insidious is the anxiety that a readmission to the hospital is seen as a failure of home care, and perhaps of the parent's ability to care for the child in the home (Sobotka, Lynch, et al., [<reflink idref="bib61" id="ref39">61</reflink>]). Long and repeated hospitalizations also have non-trivial financial impacts on families beyond high medical expenses. As in the case vignette of Leila, families often have to choose between maintaining employment and supporting their hospitalized child. Travel to the hospital, staying outside the family home, parking, meals away, etc. all add up to enormous expenses for vulnerable families. Greater personnel and financial support for families are critical for keeping the child in the community and should not be considered cost-prohibitive. For CMC, home healthcare is estimated to be less than two percent of total healthcare expenses. Greater investment in home health and community programs focused on care coordination for complex families have been forecasted to be net cost saving through preventing emergency room and inpatient stays (Berry et al., [<reflink idref="bib6" id="ref40">6</reflink>]).</p> <hd id="AN0182471421-7">Current State of Home Healthcare for Children with IMV</hd> <p>When available, the presence of well-trained home health nurses who work longitudinally within the family home supports the child's life and overall family functioning (Foster et al., [<reflink idref="bib19" id="ref41">19</reflink>]). Some families and nurses describe working together over years; the deep relationships with families often sustain nurses in field of home health (Sobotka et al., [<reflink idref="bib59" id="ref42">59</reflink>]). Particularly in the one-on-one home setting, the nurse-patient relationship plays a critical role in the child's developmental trajectory. The nurse serves as a primary caregiving figure (Sobotka, Lynch, et al., [<reflink idref="bib60" id="ref43">60</reflink>]).</p> <p>However, nursing shortages have been described broadly, and have worsened in the wake of the COVID-19 pandemic (American Nurses Association (ANA), [<reflink idref="bib3" id="ref44">3</reflink>]). For home health nurses in particular, agencies and providers describe a lack of skilled providers to meet the demand of CMC living at home (Cushman & Ellenbecker, [<reflink idref="bib11" id="ref45">11</reflink>]; Foster et al., [<reflink idref="bib18" id="ref46">18</reflink>]; McCreary, [<reflink idref="bib38" id="ref47">38</reflink>]; Sobotka, Dholakia, Berry, et al., [<reflink idref="bib57" id="ref48">57</reflink>]). A national sample of IMV experts described that patients receive less nursing support than experts consider to be necessary for living safely at home given the child's level of medical complexity and need for close supervision (Sobotka, Dholakia, Berry, et al., [<reflink idref="bib57" id="ref49">57</reflink>]).</p> <p>Within the home healthcare workforce, lapses in quality also exist (Foster et al., [<reflink idref="bib18" id="ref50">18</reflink>], [<reflink idref="bib20" id="ref51">20</reflink>]; Kun et al., [<reflink idref="bib35" id="ref52">35</reflink>]). Home health nurses demonstrate knowledge gaps on written evaluations of emergency scenarios, and nearly all favored more ventilator training (Kun et al., [<reflink idref="bib35" id="ref53">35</reflink>]). Parents also report deficiencies in quality of home health nurses such as lack of knowledge or physical and interpersonal skills to attentively engage with a young child (Foster et al., [<reflink idref="bib20" id="ref54">20</reflink>]).</p> <p>Experts have identified that disparities in pay rate as compared to the hospital setting contribute to workforce shortages in home health nursing (Foster et al., [<reflink idref="bib18" id="ref55">18</reflink>]; Simpser et al., [<reflink idref="bib52" id="ref56">52</reflink>]). However, there may also be non-financial reasons for these shortages. Nurses describe that they enter the field serendipitously, instead of through direct recruitment during or after their nursing education (Sobotka et al., [<reflink idref="bib59" id="ref57">59</reflink>]). There are missed opportunities to introduce home health more extensively during nursing education. Many nurses may be interested in home health because of the unique lifestyle and patient care characteristics, yet few describe being recruited directly from agencies (Sobotka et al., [<reflink idref="bib59" id="ref58">59</reflink>]).</p> <hd id="AN0182471421-8">Health System Impacts of Home Nursing Shortages</hd> <p>Shortages of skilled private duty home health nursing can result in deleterious impacts on other aspects of the healthcare system. Such shortages frequently result in delayed discharge, adding substantially to inpatient expenditures (Maynard et al., [<reflink idref="bib37" id="ref59">37</reflink>]; Sobotka et al., [<reflink idref="bib54" id="ref60">54</reflink>], [<reflink idref="bib62" id="ref61">62</reflink>]). Several class action lawsuits have charged state Medicaid agencies with failure to provide private duty nursing as a violation of the Early and Periodic Screening, Diagnostic, and Treatment provision of the Medicaid Act, resulting in system-wide changes ("A.H.R., et al., Plaintiffs, v. Washington State Health Care Authority, et al.," [<reflink idref="bib1" id="ref62">1</reflink>]; "O. B. v. Norwood," [<reflink idref="bib45" id="ref63">45</reflink>]; Perkins & Agrawal, [<reflink idref="bib48" id="ref64">48</reflink>]). It is also notable that children with IMV often require ICU-level care, limiting the availability of this scarce resource (Krugman & Rauch, [<reflink idref="bib34" id="ref65">34</reflink>]).</p> <p>Beyond prolonging the initial hospitalization where IMV is initiated, nursing shortages may also lead to increased hospital readmissions, which reduces bed availability and increases inpatient spending. Care coordinators working throughout a state program for CMC and home nursing have described families who had to resort to being readmitted to the hospital, either due to parental exhaustion, insufficient medical expertise, or a lack of nursing available to provide critical respite services at home (Sobotka, Lynch, et al., [<reflink idref="bib62" id="ref66">62</reflink>], [<reflink idref="bib61" id="ref67">61</reflink>]).</p> <p>The long-term impacts of increased hospital days have not been fully characterized and deserve future research. One major long-term health system impact of hospitalization is the increased likelihood of long-term disability in this population, which leads to increased health utilization across the lifespan. Hospitalized children are often restricted within their hospital bed or crib, are unlikely to interact with other peers, and experience separation from primary caregivers (Hogan et al., [<reflink idref="bib27" id="ref68">27</reflink>]; Sobotka et al., [<reflink idref="bib55" id="ref69">55</reflink>]), Naturally, children flourish in the home environment and parents of children with IMV see developmental gains despite patterns of overall vulnerability and delay (Sobotka, Lynch, et al., [<reflink idref="bib60" id="ref70">60</reflink>]). When home nursing is not available to support parents in the home setting, developmental outcomes are impacted by reducing the bandwidth of primary caregivers. Home health nurses who engage in developmentally-stimulating play may likely help support positive developmental trajectories for these vulnerable children (Sobotka, Lynch, et al., [<reflink idref="bib60" id="ref71">60</reflink>]).</p> <hd id="AN0182471421-9">Impacts on Parents of Caring for a Child with IMV in the Home</hd> <p>Home care of a child with IMV is extremely challenging for caregivers and, especially under current conditions, results in extraordinary demands on parents, most often mothers. In addition to the nursing skills and direct monitoring of the child, parents describe that care coordination activities including managing durable medical equipment and supplies added further stress to caring for their child at home (Amar-Dolan et al., [<reflink idref="bib2" id="ref72">2</reflink>]). The vigilance and constant nature of caring for a CMC also makes everyday household and family tasks more difficult to complete (Foster et al., [<reflink idref="bib20" id="ref73">20</reflink>]). As a result, parents describe chronic sleep deprivation (Israelsson-Skogsberg et al., [<reflink idref="bib30" id="ref74">30</reflink>]; Meltzer et al., [<reflink idref="bib39" id="ref75">39</reflink>], [<reflink idref="bib40" id="ref76">40</reflink>]), and a number of studies have demonstrated that mothers of CMC and IMV have high rates of depressive symptoms (Meltzer et al., [<reflink idref="bib39" id="ref77">39</reflink>]; Miles et al., [<reflink idref="bib41" id="ref78">41</reflink>]). Families also experience financial hardship as a result of caring for their CMC directly or because of deferred work opportunities (Thyen et al., [<reflink idref="bib65" id="ref79">65</reflink>]). Parents often feel stressed, overwhelmed, and unsupported by community healthcare services (Dybwik et al., [<reflink idref="bib14" id="ref80">14</reflink>]; Hefner & Tsai, [<reflink idref="bib24" id="ref81">24</reflink>]; Whiting, [<reflink idref="bib67" id="ref82">67</reflink>]) and report feeling generally isolated (Carnevale et al., [<reflink idref="bib9" id="ref83">9</reflink>]; Falkson et al., [<reflink idref="bib16" id="ref84">16</reflink>]; Kirk, [<reflink idref="bib33" id="ref85">33</reflink>]). Evidence exist that parent-to-parent support programs can reduce psychological distress, improve parenting self-efficacy, and provide practical solutions (Kerr & McIntosh, [<reflink idref="bib32" id="ref86">32</reflink>]; Pollock et al., [<reflink idref="bib49" id="ref87">49</reflink>]; Singer et al., [<reflink idref="bib53" id="ref88">53</reflink>]), but these parent-to-parent opportunities rarely exist formally within current care systems.</p> <hd id="AN0182471421-10">Potential Future Health System Innovations</hd> <p>Improving the state of healthcare for children with IMV and their families requires innovative and integrated approaches to the delivery of home health nursing care by both non-family and family caregivers. In this section, I provide several suggestions informed by the literature that may improve policy and practice.</p> <hd id="AN0182471421-11">Non-Family Caregiving Innovations</hd> <p>The home health nursing field fails to recruit and retain a workforce due to a lack of competitive benefit and wages, as well as little existing exposure to the field of home health during primary nursing education. The American Academy of Pediatrics Policy Statement on Financing of Pediatric Home Health Care has urged adequate payment for skilled nursing services in order to adequately recruit and retain qualified providers (Simpser et al., [<reflink idref="bib52" id="ref89">52</reflink>]). Some experts have suggested consumer-directed care models to enable families to hire nurses directly (Musumeci et al., [<reflink idref="bib42" id="ref90">42</reflink>]; Watts et al., [<reflink idref="bib66" id="ref91">66</reflink>]). However, these programs may likely better meet the needs of some families than others. Families of CMC describe that navigation of healthcare systems as confusing and describe that they need more help (Hofmann & Yonkaitis, [<reflink idref="bib26" id="ref92">26</reflink>]). In a consumer-directed care model, those without the skills or bandwidth to manage hiring nurses and work schedules may fare worse without agency-level support. Therefore, a consumer-directed care model is best paired with quality care coordination and focused training for parents on how to manage care teams. These supports ought to be greater for families with higher needs and more limited bandwidth to improve equity.</p> <p>In order to match the demand, home healthcare innovations ought to include augmenting the home health workforce itself. First, this can be done potentially by utilizing focused training and strategic utilization of paid non-nurse caregivers, such as certified nursing assistants and personal assistants, who provide critical support for CMC outside of the US (Israelsson-Skogsberg & Lindahl, [<reflink idref="bib29" id="ref93">29</reflink>]; Maddox & Pontin, [<reflink idref="bib36" id="ref94">36</reflink>]). While there is some evidence that a percentage of CMC do receive non-nurse, paid caregiving (Sobotka, Hall, et al., [<reflink idref="bib58" id="ref95">58</reflink>]), the majority of children with IMV are only permitted to receive skilled nursing care (from a Registered Nurse or Licensed Practical Nurse) because they are considered too medically complicated for other home healthcare workers. Paradoxically, trained lay persons are permitted to care independently for children with IMV at home if they are parents.</p> <hd id="AN0182471421-12">Family Caregiving Innovations</hd> <p>Community nursing care delivered by family caregivers continues to be, in most settings, unpaid and underrecognized. A few states enable parents to be paid as Certified Nursing Assistants, and a recent study of a Colorado agency demonstrated that parent CNAs maintained longer job retainment than non-relative CNAs (Foster et al., [<reflink idref="bib17" id="ref96">17</reflink>]). The illustrative case example of the Thomas family is an all too common scenario where families deliver care for unfilled shifts indefinitely. Recognizing that many parents forgo their own employment opportunities in order to care for their child, paying family caregivers supports recuperation of lost wages and recognizes the vital contribution that parents make to medically complex home care.</p> <p>Regardless of the level of expertise, parents and paid caregivers must work collaboratively to support the child in the home. Communication about shifts, care plans, and changing medical acuity must resemble that of hospital hand-offs. Afterall, these children with IMV would otherwise most likely be cared for in a medical ICU and deserve strong continuity of care between providers in order to remain healthy and at home.</p> <hd id="AN0182471421-13">Conclusion</hd> <p>To thrive in the home setting, children with IMV require complex coordinated care by family and home health nursing caregivers. Healthcare systems ought to support families in ways that sustain the family unit, not convert it to a surrogate home health agency or home ICU. Parents infinitely trading-off nursing duties instead of bedtime routines should not be a temporary nor a longterm solution to the healthcare system problem. The current system which demands that parents pick up every unfilled home health shift – calling off from work, neglecting siblings and self-care responsibilities - is not only a healthcare breakdown, but a failure of our very humanity. These children and their resourceful, hardworking, highly skilled, yet unpaid parents deserve innovations in practice to solve the current home healthcare crises. We must acknowledge that, in spite of the heroic efforts of these "magic mothers", these crises have not truly disappeared and remain a threat until the system itself is changed.</p> <hd id="AN0182471421-14">Funding</hd> <p>Sobotka received support from The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD, K23 HD097276) and the T73 Leadership Education in Neurodevelopmental and Related Disorders Training Program (LEND, T73MC11047) for projects which contributed to this manuscript.</p> <hd id="AN0182471421-15">Compliance with Ethical Standards</hd> <p></p> <hd id="AN0182471421-16">Conflict of Interest</hd> <p>Dr. Sobotka has no conflicts of interest relevant to this article to disclose. The author has no conflicts of interest relevant to this article to disclose.</p> <hd id="AN0182471421-17">Ethical Approval</hd> <p>Neither HRSA nor the NIH had any role in the writing of the report, or the decision to submit the paper for publication.</p> <hd id="AN0182471421-18">Informed Consent</hd> <p>This article contains no original research with human participants and/or animals.</p> <hd id="AN0182471421-19">Publisher's Note</hd> <p>Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.</p> <ref id="AN0182471421-20"> <title> References </title> <blist> <bibl id="bib1" idref="ref19" type="bt">1</bibl> <bibtext> A. H. R. v. Wash. State Health Care Auth, 469 F. Supp. 3d 1018 (W.D. Wash. 2016).</bibtext> </blist> <blist> <bibl id="bib2" idref="ref20" type="bt">2</bibl> <bibtext> Amar-Dolan, L. G, Horn, M. H, O'Connell, B, Parsons, S. K, Roussin, C. J, Weinstock, P. H, & Graham, R. J. (2020, Jul). 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  Label: Title
  Group: Ti
  Data: Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Sarah+A%2E+Sobotka%22">Sarah A. Sobotka</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0001-7352-2043">0000-0001-7352-2043</externalLink>)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Developmental+and+Physical+Disabilities%22"><i>Journal of Developmental and Physical Disabilities</i></searchLink>. 2025 37(1):185-197.
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  Label: Availability
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  Data: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 13
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2025
– Name: SourceSuprt
  Label: Sponsoring Agency
  Group: SrcSuprt
  Data: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (DHHS/NIH)<br />Health Resources and Services Administration (HRSA) (DHHS), Maternal and Child Health Bureau (MCHB)
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  Label: Contract Number
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  Data: K23HD097276<br />T73MC11047
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Child+Health%22">Child Health</searchLink><br /><searchLink fieldCode="DE" term="%22Special+Health+Problems%22">Special Health Problems</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Environment%22">Family Environment</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Role%22">Parent Role</searchLink><br /><searchLink fieldCode="DE" term="%22Mothers%22">Mothers</searchLink><br /><searchLink fieldCode="DE" term="%22Safety%22">Safety</searchLink><br /><searchLink fieldCode="DE" term="%22Labor+Supply%22">Labor Supply</searchLink><br /><searchLink fieldCode="DE" term="%22Labor+Needs%22">Labor Needs</searchLink><br /><searchLink fieldCode="DE" term="%22Caregiver+Role%22">Caregiver Role</searchLink><br /><searchLink fieldCode="DE" term="%22Nurses%22">Nurses</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Home+Programs%22">Home Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Mother+Attitudes%22">Mother Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Parents+as+Teachers%22">Parents as Teachers</searchLink><br /><searchLink fieldCode="DE" term="%22Students+with+Disabilities%22">Students with Disabilities</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1007/s10882-023-09936-2
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1056-263X<br />1573-3580
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Children with invasive mechanical ventilation (IMV)(ventilation delivered through an endotracheal tube), often require 24/7 monitoring and care by skilled caregivers in order to stay safely within the home environment. Practice standards recommend skilled in-home nursing to maintain safe monitoring practices. However, across the country, a lack of home health nurses trained to care for children with IMV threatens the safety of this high-risk population. Despite this shortage, the vast majority of children with IMV do live at home. With great personal sacrifice, health system deficiencies are filled by parents, primarily mothers, in their roles as parent, primary nurse, care coordinator, therapist, educator, and advocate, and thus avoid readmissions and health system crises. Their contribution to fill health system gaps, by necessity, is often in contradiction to safe work hour recommendations for healthcare workers. These magic mothers and fathers make potential crises "disappear" out of sheer grit and determination to keep their children home. The long-term impacts of health service gaps on family systems must be considered and innovative solutions enacted to support these vulnerable children and families.
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  Label: Abstractor
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  Data: As Provided
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  Label: Entry Date
  Group: Date
  Data: 2025
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  Label: Accession Number
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  Data: EJ1458554
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1458554
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      – Type: doi
        Value: 10.1007/s10882-023-09936-2
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      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 13
        StartPage: 185
    Subjects:
      – SubjectFull: Child Health
        Type: general
      – SubjectFull: Special Health Problems
        Type: general
      – SubjectFull: Family Environment
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      – SubjectFull: Parent Role
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      – SubjectFull: Safety
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      – SubjectFull: Labor Needs
        Type: general
      – SubjectFull: Caregiver Role
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      – SubjectFull: Nurses
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      – SubjectFull: Health Services
        Type: general
      – SubjectFull: Access to Health Care
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      – SubjectFull: Home Programs
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      – SubjectFull: Mother Attitudes
        Type: general
      – SubjectFull: Parents as Teachers
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      – SubjectFull: Students with Disabilities
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    Titles:
      – TitleFull: Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear
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            – TitleFull: Journal of Developmental and Physical Disabilities
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