Home Health Care Research for Children With Disability and Medical Complexity

While many people first think of a hospital or clinic when they think of health care delivery, the home and community settings are where most children receive their daily medical care.¹ Home health care (HHC) is defined as the delivery of services, equipment, and supplies in a person’s home and community to treat their chronic medical condition, disability, and acute illness.^2,3 HHC holds particular importance for the health and function of children with disability (CWD), especially the subgroup of children with medical complexity (CMC) who have disabling chronic conditions, rely on medications and intricate respiratory, digestive, and other organ-system care regimens, and are assisted with medical equipment and supplies for daily survival.^4,5 The population has increased in America, with approximately 1 in 20 children discharged from a hospital to home with specialized durable medical equipment (DME) or HHC service.^6,7 

Despite CWD/CMC relying heavily on HHC for their daily health and functioning, American pediatric research focused on the home setting has lagged behind other health service research areas. While home is a core setting of life, HHC often appears to be a forgotten health care sector that, we argue, is deserving of increased attention. In this paper, we cover the American historical and legal context of pediatric HHC for CWD/CMC, including how it came to be that children are legally entitled to HHC as a public service. We also review the known American nonbehavioral HHC literature, which demonstrates how inadequate financing and training has led to a national workforce shortage in pediatric HHC, nonmedically necessary hospitalization, delays in equipment, and family stress, injury, and financial insecurity. We finish with proposing a research agenda with specific questions and example studies that, if undertaken, we believe can transform multifaceted health outcomes for these children and their families.

As with all other medically necessary health care, HHC is covered under Medicaid by Early and Periodic Screening, Diagnostic, and Treatment and may be covered by a commercial health insurance plan. In many ways, the description of “home” in HHC is misleading, as this care is meant to enable the child’s broad participation in family and community life. The American Academy of Pediatrics guidelines recommend that pediatricians create a daily home care plan to cover medically necessary care that may be delivered over the day and night at home and in the community, including within the school setting.⁸ Care plans are typically created in a collaborative effort with the child, family, and interdisciplinary health providers, which may include primary and subspecialty physicians, advanced practice nurses, respiratory therapists, and habilitative therapists. Within each care plan, services, equipment, and supplies are prescribed and detailed. In addition to addressing nutrition, a care plan may include support for other activities of daily living like dressing, transfers, and toileting. HHC services may then be delivered by a range of health professionals, including registered nurses (RNs), licensed practical nurses (LPNs), certified nursing assistants, personal care assistants, home health aides, and therapists, based on the skill level needed for a child’s care tasks. Notably, however, in current common practice, care tasks of all skill types are delivered in part or even in whole by family caregivers, typically unpaid and without work-hour restrictions.⁹ 

CWD/CMC populations have increased and aged over the last 50 years due to medical advances that have improved pediatric survival from prematurity, rare conditions, and injury.^4,10,11 Specifically, innovation in transportable technologies such as portable ventilators has made discharge from the hospital possible for children requiring continuous technological support and expanded the conditions managed outside hospital walls.¹² 

By the 1980s, the increase in the need for HHC services and equipment to address children’s highly technical and labor-intensive care was present but without a clear avenue for insurance payment. Patient and family advocates lobbied for access to Medicaid coverage through new waivers (eg, “Katie Beckett waivers”) and specialized programs.^13,14 Subsequent passage of the Americans with Disabilities Act in 1990, along with the Olmstead Supreme court decision in 1999, expanded public actors’ obligations to ensure children with disabling conditions have access to care in the home and community.^13,15 Together, these precedents created a legal standard in that CWD/CMC should be able to access health care to live at home.

As investments in pediatric hospitals and research expanded in the 1990s and 2000s, pediatric HHC infrastructure did not similarly expand, primarily due to relatively lower reimbursement. Currently, nonfamily pediatric HHC is typically provided by external agencies that are independent from the tertiary pediatric health systems.^7,16 As we continue through the 21st century, despite most families’ preference for their children to receive their health care at home and in the community, large gaps persist in pediatric HHC delivery and research.^1,8,16–18 

Most of the peer-reviewed research in HHC over the last several decades has documented a “leaky pipeline” of HHC access gaps along the care continuum in which nursing access is lost (Figure 1; Table 1)^19–32. Figure 1 demonstrates how financial and coverage policy gaps lead to insufficient access of HHC for children, in which the gap led to decreasing access to nonfamily medical HHC. First, wait lists for public coverage or a lack of home care coverage in commercial plans reduces insurance coverage for pediatric HHC.^14,32 The use of nonvalidated score tools and generalized cutoffs (eg, requiring “technology dependence” or 16-hour maximum allocation rules) for eligibility determination and hour allocation further erodes HHC coverage.^32–34 Even when hours are approved, family caregivers often cannot get HHC to take their child’s case, and if they do, providers may not be satisfactorily trained on the child’s level of care needs and/or often miss shifts. As one goes farther along, the number of hours of unpaid medical labor that family caregivers contribute to a child’s care accumulates. One published example of 38 children who were supposed to receive HHC found that the average child missed 40 hours/week of care.²⁷ Similar research has recorded gaps in access not just to HHC services but also critical HHC equipment such as wheelchairs and airways supplies.^35–37 Published research also has underscored a persistent gap in pediatric experience among workers in pediatric HHC, including their safety and experience using pediatric DME/devices.^{26,27,38–58} 

Peer-reviewed research has also demonstrated fragmentation in HHC delivery, including poor information sharing and coordination between pediatric health systems, HHC agencies, and DME suppliers. One recent 3-year study at a children’s hospital found that 188 children with private duty nursing needs were discharged to 35 different home health agencies at a total of 44 different sites, of which none shared electronic health records or ordering with the hospital or across agencies.⁷ Qualitative findings in other studies have similarly documented fragmentation and error risk due to a lack of record sharing between HHC agencies, suppliers, and pediatric health systems.^59–61 

With the enormous documented gap between high-quality service and need, it is no surprise that the literature reports broad negative impacts on CWD/CMCs’ health and safety. Under-recognition of home safety events is widespread, with one study of in-home medication errors observing that family caregivers and prescribing physicians were unaware of 47% and 80% of home medication errors, respectively; another recent study found that 30% of CMC’s emergency department visits were due to home device complications and errors.^62–64 Numerous qualitative studies have linked inadequate HHC to poor health outcomes including emergency department visits, additional medical procedures, and nonmedically necessary hospitalization.^{19–29,59–65} Family caregivers of CWD have also reported an under-referral to HHC and barriers to the receipt of HHC, especially therapies and equipment or supplies, which negatively impacted their child’s function and neurodevelopment.^66,67 

Nascent research is also unveiling the downstream impacts of inadequate HHC on the neurodevelopmental trajectories of CWD/CMC, a population at high risk for severe disabilities across developmental domains.⁶⁸ Already neurodevelopmentally vulnerable due to the double jeopardy of medical complexity and long hospital stays,⁶⁹ CWD/CMC’s gaps in HHC can reduce their school attendance and force their family caregivers to engage in nursing and medical caregiving rather than typical parenting activities; these differential experiences likely contribute to worse disability profiles and social, emotional, or educational outcomes.⁷⁰ 

Impacts of the care of CWD/CMC on family caregivers, most often mothers, have been relatively well studied, with results showing how HHC gaps result in significant parental stress and negative health consequences and are predictive of child health care utilization.^27,71–81 Poorer physical health can stem from both direct care tasks (eg, back injury from lifting without adequate equipment) and a forgone care of family caregivers’ own health because of time constraints and caregiving fatigue.^{27,71–74,82,83} Specifically, these studies have demonstrated how caregivers can often feel overwhelmed and unsupported by a persistent lack of HHC and DME access, even becoming socially isolated, which further worsens their caregiving capacity. Key limitations in this area of HHC research are the lack of a life-course timeline to capture the challenges unique to aging parents and children and the lack of inclusion of diverse family perspectives. Most research to date has primarily focused on non-Hispanic white and English-speaking families of younger children.³³ However, at least one efficacy study using telemedicine to support the mental health of family caregivers has shown benefit and potential for expansion.⁸⁴ Yet, other studies have shown that new technologies have expanded the ability for providers to monitor care at home.^85,86 

Existing research has also documented alarming patterns of how inadequate HHC financing can magnify existing health and financial disparities.³² With a current HHC system that defaults most, if not all, in-home care to family caregivers, this situation significantly impairs families’ abilities to further education, remain employed, and build financial capital.^{59,77,87–91} A recent national-based study found that families of children with special health care needs—a broad population that includes CWD/CMC—lost an average of $18 000/year per family to care for their child’s medical needs; moreover, impacted families were more likely to have a lower income, be Hispanic, and spend more than $5000/year on out-of-pocket costs.^89,92 The “interwoven nature” of medical and social needs means that families of children with more complex health care needs may experience higher rates of poverty, inadequate housing, poor caregiver health, divorce, and food insecurity, demonstrating the vital role that HHC access plays in equity.⁹³ 

The financial and psychosocial stressors that result from inadequate HHC can impact a family’s ability to meet their child’s daily medical care needs, and concerns for maltreatment (ie, neglect, abuse) may arise. Prior research shows CMC/CWD are disproportionately represented in the child welfare system.^94–99 A Canadian study found that nearly 1-in-4 CMC had involvement with the child welfare system, and over 1-in-3 of those children were placed in out-of-home foster care arrangements (as opposed to receiving in-home prevention services).¹⁰⁰ In the United States, CMC account for approximately 10% of children in foster care yet less than 1% of all children.^11,101,102 This raises questions as to what degree families are being penalized, even split apart, because of inadequate HHC access (that notably falls short of legal standards) and what obligations the pediatric health care system and policymakers have to ensure all families are supported and equipped to care for their child’s medical needs at home prior to child welfare involvement.^103–106 

The aforementioned research has provided some guidance on the current state of HHC, but there is still much to learn. Interventions that improve HHC and address child health, family quality of life, hospitalizations, and family financial strain are as yet undiscovered. A recent 40-year systematic literature review found that while the number of pediatric HHC peer-reviewed manuscripts has increased, studies of this health care sector remain primarily descriptive, cross-sectional, and regional and rarely evaluate quality in reproducible ways.³³ Another systematic literature review in 2023 that focused on interventional studies to improve pediatric home- and community-based care identified only 25 tested interventions, all of which were limited in scope to caregiver education, support, or self-efficacy rather than improvement or expansion of the services themselves.⁹⁹ 

More focus in HHC research is needed to understand how to improve child health, functional, developmental, family psychosocial, and financial outcomes affected by health care occurring at home and in the community.⁶⁸ We believe the transformation of pediatric HHC is possible with (1) family partnership driving research priorities, (2) dedicated HHC funding to support rigorous methods that evaluate multifaceted outcomes, and (3) follow through by insurers and government programs to enact the evidence-based findings into practice. When the collective motives are high, evidence-based improvements in the access and quality of HHC to improve outcomes for children, families, health systems, and payers are possible.

We propose the following actionable agenda that applies this conceptual framework to future research projects relevant to the American health care system. Across this portfolio of work, pediatricians and pediatric researchers must partner with families and other essential key stakeholders—patient-family advocacy organizations, HHC providers and agencies, DME manufacturers and suppliers, health care provider systems, educational systems, employers, and payers—to address the practices and policies needed to enact evidence-based care. The field must also elevate HHC as an essential form of health care delivery in our medical and nursing societies, both to draw funding and talent toward this area but also to facilitate an integration of HHC with other health care sectors.

We suggest that research for this population focus on the following additional areas: (1) child and family outcomes across the life course, (2) health service use, (3) models of HHC care provision, (4) education and training, (5) measurement of HHC access and quality, and (6) identification and mitigation of disparities. Table 2 presents these areas, each deserving of distinct, dedicated funding streams, to move forward a child- and family-centered and anti-ableist HHC scholarly agenda. Table 3 then provides examples of prospective, intervention-based studies that could be proposed across these scholarly areas. Each example study includes at least one patient- and family-centered outcome, while also considering outcomes that matter to health care systems and payers, organized by the National Academy of Medicine’s (NAM) framework of quality across the domains of effective, safe, patient-centered, timely, equitable, and efficient care.^26,59,107 Proposed projects’ designs also emphasize the importance of child and family engagement in codesign when developing new HHC interventions. Lastly, while each study is listed within a primary NAM quality domain, we note that many studies cross quality domains (eg, effectiveness and safety) and address multiple HHC research scholarly areas (eg, workforce training, models of care).

First, research is needed to evaluate the clinical effectiveness of HHC, including impact on CWD/CMC health, function, and participation (Table 2). Research examples (Table 3) include robust efficacy and effectiveness trials. Examples of clinical effectiveness studies could include the (1) integration of home-based nutrition support to improve growth and nutrition-related outcomes in children receiving HHC or the (2) codesign of a scalable virtual simulation training program for HHC to reduce the risk of skin pressure injury and improve enteral feeding tolerance for CWD/CMC. Research should also address which HHC interventions will improve family well-being (physical, mental, and financial health), for example, by prospectively evaluating the effectiveness of the new state-based paid caregiver programs and how they can reduce family financial stressors and improve family health.

Research should enable a better understanding of which children are using HHC and how their clinical needs and allocations vary nationally, including (1) what treatments are being delivered, (2) who is providing them (ie, RNs, LPNs, family), (3) who should be providing them (ie, matching care asks with scope of practice), and (4) how HHC use is mechanistically linked to acute health care in the emergency department and hospital (Table 2). We encourage this work to address not only the care received but also to consider other NAM quality-of-care domains such as timeliness and family centeredness. An example of such a study is a prospective observational study that tracks delay in insurance and approvals for pediatric equipment and medications (including delay costs) paired with a quality improvement intervention to reduce wait time to pediatric equipment receipt. Interventional research to improve home health service access is needed, such as a quasi-experimental trial pairing pediatric home nurses from children’s hospitals with children eligible for home nursing but with underfilled hours to address outcomes of timeliness and efficiency (Table 3).

Research should advance the understanding of what tools, skills, or other interventions could make HHC provision effective at treating patients’ chronic symptoms as well as preventing mortality, costly emergency care, or hospitalizations (Table 2). For example, what strategies best integrate care between dispersed HHC team members in homes and schools with pediatric specialists and medical homes? Research in this area may include the development and evaluation of digital tools and remote patient monitoring to support home-based clinical decision-making, given little knowledge exists on how to integrate such emerging technologies into HHC (Table 3). More research is needed to understand how to replicate, scale, and ensure payment for innovative models of care—like those providing integrated remote supports for children with chronic respiratory failure—in other settings and clinical groups.^108,109 Quasi-experimental and implementation science study designs are particularly positioned for utility in this research area.

One specific HHC challenge well suited to innovation is managing health crises in the home and community. The use of inclusive, evidence-based participatory codesign methods can be pursued with families and HHC providers to design interventions to improve care during acute exacerbations.^110–125 In addition to the depth of personal knowledge family caregivers have about a child’s health, family caregivers can proactively identify and rapidly intervene at the onset of concerning symptoms that predict acute care use.^116,117 Interventions focused on bolstering family capacity and access to resources through HHC likely play a more critical role in treating symptoms and preventing acute care visits than clinic-centric strategies.¹¹⁸ Given their multiple components and need for customization to address the unique needs of each event and individual, these approaches can be viewed as complex health interventions.¹¹⁹ To produce a scalable implementation of complex interventions with high-quality evidence, experimental designs might include just-in-time adaptive intervention designs and hybrid effectiveness implementation trials.^120–124 

As HHC models in the United States evolve, proactive and preventive evidence-based strategies must be implemented to ensure safety of care. One example relates to managing the safety of complex medication regimens in the home setting.¹²⁵ Any solution must be acceptable to, and inclusive of, family caregivers from all levels of health literacy and should minimize additional caregiving tasks. One example intervention might be to include pediatric pharmacists experienced with CMC to proactively identify and monitor in-home medication-related problems, support HHC and family caregivers, and communicate with the child’s larger health care team.¹²⁶ Other solutions could leverage technology-based⁸⁶ symptom monitoring for children receiving HHC to preemptively detect adverse symptoms that could signal medication-related problems or adverse drug events.¹²⁷ If proven to be effective, these types of approaches could be applied more broadly to other aspects of HHC to enhance safety at home.

The best practices in training, monitoring, and maintaining HHC skillsets—for either HHC providers or family caregivers—have yet to be established (Table 2). Any future agenda in pediatric HHC must address the need for higher quality training that is evaluated for effectiveness. An example may include a trial randomizing pediatric HHC nurses to a “virtual peer” to increase the effectiveness of symptom monitoring at home as measured by a reduction in pain and feeding symptoms, a reduction in emergency visits, and a reported confidence providing care by nurse and family caregivers (Table 3). We also need to conduct economic- and policy-based research to identify evidence-based strategies for supporting the expansion of the much-needed HHC workforce, including how to achieve fair and equitable compensation for families filling the care gap with high levels of training and skills.^128–130 

Research in HHC should be conducted beyond English-speaking, white children and families to advance understanding of the range of needs and preferences of HHC across diverse populations (Table 2).³³ HHC research focused on disability and its intersection with structural ableism, racism, and classism is critically needed. Pervasive ableism exists in health care, especially payer assessments, often constructing desired outcomes in terms such as “likely to benefit” or with requirements to demonstrate improvement in function rather than reduced decline.⁶⁶ Investigators ought to be alert to this existing bias, and HHC research should be embedded in anti-ableism, which favors a social model of disability.^66,131–133 One research example in this area is the codesign and evaluation of an anti-ableist curriculum to improve care delivery experiences and reduce safety events in CWD (Table 3). Outcome measurement in this research should include focus on links between access to HHC and school, recreation, and social engagement.^68,134 Another example is a prospective, multisite step-wedge clinical trial to evaluate how a hospital and HHC agency collaborative might improve access to care at home in families that speak a language other than English (Table 3).

Reproducible measures of access and quality of HHC are needed to conduct effective research. Measurement science should be conducted to establish valid and reliable measures meaningful to child health and family quality of life and should hold health care payers, providers, and policy makers accountable for high-quality HHC. Research should measure—and ideally benchmark—access and quality measures across the NAM domains, such as total hours assessed/approved, hours received/filled, timeliness of care, and patient-centered HHC.² For example, an agreed-upon definition of HHC “access” is needed to conduct a prospective step-wedge intervention to evaluate the impacts of consistent nursing teams on family employment and child community participation (Table 3). Another example is a development of a reproducible approach to systematic report pediatric HHC-based safety errors and adverse events, including deaths.

Due to the highly heterogenous and fractioned delivery of HHC in the American health care system, optimizing HHC research will require creating comprehensive datasets that support the synthesis of HHC trends and address research gaps. Creation of a pediatric HHC research consortium that links (1) family-led and community-based organizations supporting and advocating for CWD/CMC and (2) US pediatric hospitals, HHC agencies, and payers that oversee CWD/CMC home care services could collectively facilitate data sharing and address subgroups of children with rare conditions. Such a consortium would encourage collaborative research that leverages adaptive and quasi-experimental design to inform pediatric health systems and policy makers about care at home in the “real world.” Part of the work of this consortium could be to develop standardized electronic data structures to ensure pediatric HHC data are reproducible across electronic health records, including improved specificity regarding HHC services, supplies, and equipment.

To additionally accelerate the collection of data of CWD/CMC and the families receiving HHC, a national patient registry could be developed that would allow children and families to enroll themselves with parent-reported data on quality and access to care. The potential avenues for future research would be substantial, and it could be a place to enable families to not only learn about or participate in scholarly research opportunities but could help to direct and actively partner in codesigning studies based on real-time emerging needs and trends.

The home and community are where most health care occurs for children, and the complexity of HHC need has expanded rapidly in the United States over the last 40 to 50 years. Opportunities for research and innovation in pediatric HHC have the potential to change the landscape of US HHC dramatically. The transformation and optimization of HHC are possible with dedicated funding to address multifaceted outcomes valued by children and families as well as insurers and government programs. To achieve meaningful impact, a partnership with family caregiving experts in home care to advance knowledge about in-home care delivery is essential. We posit that researchers should partner with family caregiving experts and patients to advance knowledge about child and family health outcomes, HHC use, new models of care, and optimal approaches to education and training while also considering meaningful approaches to address disparities. The creation of a pediatric HHC data-sharing consortium, a patient registry, and reproducible access and quality measures are also needed. Most importantly, child health and family quality of life and care delivery priorities must be the center of any HHC research agenda, with the goal of ensuring equitable outcomes for every child and family.

CMC

children with medical complexity

CWD

children with disability

HHC

home health care

LPNs

licensed practical nurses

NAM

National Academy of Medicine

RN

registered nurse