The Pediatric Home Health Care Process: Perspectives of Prescribers, Providers, and Recipients

We interviewed professionals who routinely prescribe and deliver PHHC and families who have experience with these services. Using purposive and snowball sampling,¹³  we identified eligible professionals within each of the 10 US Health Resources and Services Administration (HRSA) regions to gain an understanding of regional practices, resources, and problems.¹⁴  Eligible professionals included the following: (1) inpatient prescribers, (2) outpatient prescribers, (3) PHHC agency administrators, (4) home care providers, and (5) others with valuable knowledge of PHHC. Professional recruitment continued until there was representation of participants with a diversity of roles across all 10 HRSA regions.

Eligible parent participants were recruited via 2 parent advocacy groups whose members have CMC. One group has a national membership, and parents were recruited via their listserv and newsletter. Because this approach yielded no parent participants from 1 HRSA region, we collaborated with a state-based parent advocacy group to recruit via their listserv. Eligible parents spoke English and had a CMC who received PHHC.

Participants completed an audiotaped, 30- to 60-minute semistructured interview; questions targeted the process of prescribing, providing, and receiving PHHC and barriers and facilitators to care. We defined PHHC broadly, instructing participants to discuss their experiences with skilled nursing, therapies, durable medical equipment, and other services used to care for children at home. Questions were tailored to participant role. Participants were compensated with a gift card and were invited to review their interview transcript for accuracy.

We performed a conventional content analysis¹⁵  on transcribed interviews. Authors systematically coded participant responses individually and then as a group to classify codes into common themes. Thematic saturation was achieved for both professional and parent interviews. Representative quotations were selected to illustrate key themes.

Institutional review board approval was obtained; participants provided oral consent because the research was deemed minimal risk.

Of 60 eligible professionals, 45 were interviewed (37 women; 8 men). Of 51 eligible parents, 48 were interviewed (39 women; 9 men). Five parents were bereaved. In Table 1, we describe participant characteristics. In Table 2, we describe the services that families reported.

As “experts” in prescribing, providing, and receiving PHHC, all participants were asked, “Given what you know, what do you think is the process that occurs from when a clinician or parent identifies a home health need to when the child actually receives those services?” In Fig 1, we describe the road map of translating a child’s needs into services. Because many CMC have frequent and prolonged hospitalizations, important steps related to PHHC occur in both the inpatient and outpatient setting (participant quotations are in Table 3).

Participants’ understanding of the PHHC process was variable, reflective of their personal roles in the process. Inpatient prescribers, who most often initiated PHHC services, were least likely to understand the entire process. They often relied on case managers, nursing staff, and other inpatient team members to identify needs, investigate options, and assist with plans of care; many described their role as limited to signing orders written by case managers. Outpatient prescribers often maintained and revised PHHC orders based on evolving needs and had more direct contact with PHHC providers and, therefore, greater awareness of the PHHC process; our data suggest that they may lack meaningful connections with the inpatient prescribers who initiated PHHC services. Families had a detailed understanding of the process of investigating options and ordering PHHC but spoke less about how PHHC orders were processed and actualized by agencies.

Despite variable understanding and involvement, parents and professionals identified specific steps in ordering, delivering, and modifying PHHC.

A PHHC need may be identified by a parent, clinician, or care-coordination team in the inpatient or outpatient setting. Identification may be of a previously unacknowledged need, a change in the child’s medical status, or a change in service eligibility.

When a PHHC need is identified in the inpatient setting, care coordinators (often case managers) work with parents and the clinical team to determine appropriate services and investigate options on the basis of insurance status, agency availability, geography, and family preference. If a need is identified in the outpatient setting, parents work with the outpatient clinician and available care coordinators, including the clinic or practice or insurance case managers or social workers. Families receive a list of possible agencies they may interview before making a choice. Sometimes care coordinators assist families in applying for Medicaid or a state waiver program to obtain PHHC benefits. Many families mentioned that when their child was younger or first eligible, they were likely to accept initial PHHC recommendations but became more discriminating over time.

Clinicians and care coordinators work together to write orders to meet the child’s needs. Orders are sent to the home health agency, or to the agency and insurance company, to obtain insurance authorization. The agency identifies staffing and begins training designated PHHC providers.

When services are approved, the home health agency meets the family to develop the plan of care. The finalized plan of care is sent to a prescriber for review and signature. Even when the PHHC referral is generated by inpatient clinicians, the plan of care must often be reviewed and signed by the outpatient clinician, usually the primary care pediatrician.

The family receives training from hospital staff, and sometimes PHHC providers, while inpatient and from PHHC providers after discharge regarding new medical technology, medication administration, and specific cares. For highly complex equipment, such as ventilators and tracheostomies, the PHHC provider may also provide predischarge simulation training at home or at other locations.

The agency may require a verbal start-of-care order from the prescriber to begin services while the final plan of care is drafted, a requirement that often causes confusion and a delay in care. Once the child is discharged and PHHC staffing is secured, home services are initiated. Parents often fill gaps in communication and coordination to ensure service delivery and advocate for new or continued PHHC to meet their child’s evolving needs. Parents learn more about potential additional PHHC services through other families and community resources. Outpatient clinicians must reapprove existing PHHC at mandated intervals, make adjustments to orders, initiate new orders, and troubleshoot PHHC problems.

Many CMC have recurrent hospitalizations, with additional PHHC needs identified. With each inpatient stay, home health services stop and must be renewed or re-initiated at discharge. When new PHHC orders are written, insurance is again navigated, services are staffed, and staff is trained. This iterative process (often initiated by different case managers, discharge coordinators, or clinicians with different insurance and home health care personnel or agencies) places excessive burden on families and providers alike.

Over time, a child may lose services if they are no longer considered medically necessary, and therapies may evolve from being home based to being school based.

With so many steps in the PHHC process that involve multiple individuals from unconnected agencies or sectors, it is important to leverage common facilitators to augment the PHHC process (Table 4).

Prescribers should understand available PHHC services and how to access them. This is particularly important for families without previous experience of home health care. Some families reported going without available services because their clinicians were unaware of existing programs, prompting unmet medical needs and family exhaustion. Knowing how to navigate insurance authorization for PHHC was mentioned repeatedly as a specific skill needed by prescribers and support staff.

Professionals advocated for planning for PHHC well before hospital discharge. Early notification of impending discharge allows PHHC agencies to secure staffing, educate parents, and address parent anxiety and expectations. Because services are commonly limited in rural areas, alternate plans for discharge, such as transfer to a rehabilitation hospital, may be necessary. Late notification of the need for PHHC or last-minute changes to the plan of care can delay hospital discharge.

Participants emphasized the need to confirm that a family’s home has adequate equipment and supplies before PHHC begins. Early and comprehensive parent education is essential because PHHC is rarely 24/7 and families fill the gaps in home care.

Participants noted that consistent communication between prescribers, providers, and parents minimizes delays and errors in PHHC. Clear, concise orders and timely order modification prevent unnecessary rehospitalization. Leveraging existing relationships and lines of communication (eg, integrated electronic medical records) helps as care needs of CMC and family social situations evolve. Parents specifically appreciate effective communication between stakeholders and proactive reauthorization of services and supplies.

With experience, and after learning from other parents of CMC, families became more active partners with PHHC prescribers and providers. Harnessing the expertise of medically savvy families can smooth the PHHC process.

Participants highlighted the relevance of support staff to ongoing PHHC management. Care coordinators for individual CMC may be employed by a variety of organizations and may have different scopes of work and different titles, including case managers, social workers, discharge coordinators, and home health liaisons. In the inpatient setting, case managers and social workers are often the interface between physicians, families, home health agencies, and insurance companies. Case managers map patient needs to potential PHHC services, investigate PHHC options, and prepare orders for physician signature. They monitor the child’s inpatient progress and anticipate how clinical changes might influence PHHC needs. They facilitate family training before discharge.

In the outpatient setting, fewer support staff were available and were often tied to a specific clinic, insurance company, or home health agency. Gaps in care coordination can interrupt PHHC services. When prescribers lack care-coordination support or experience, families become case managers by default, responsible for identifying home health needs and investigating options. Families rarely receive preparation for assuming this role, yet quality of care is consistently enhanced when parents are engaged, knowledgeable, and able to advocate for their child.

Participants agreed that quality PHHC depends on providers with strong pediatric skills; these providers are in short supply, which can delay hospital discharge or initiation of PHHC services. PHHC providers unfamiliar with pediatric chronic illness may miss warning signs of decompensation, may lack the ability to troubleshoot pediatric equipment, or may make medication errors. Ongoing education, oversight, and continuity of PHHC providers is viewed as critical to quality care for the child and to relieving burden for the family.

PHHC professionals provide in-home care, making communication and respect important to successful working relationships with families. The nature of the parent-PHHC provider relationship varied; some parents reported that PHHC providers became members of the family, whereas others noted the relationship to be more professional. Regardless of the level of interpersonal involvement between parents and providers, all agreed on the importance of clearly defined roles and consistent boundaries. Well-defined expectations and mutually respectful relationships diminished late arrivals and missed shifts by PHHC providers, circumstances that created havoc for families.

PHHC has expanded over the past 2 decades to address the needs of a growing pediatric population with medical complexity. For CMC dependent on multiple medications, medical technologies, and therapies, survival outside of an inpatient setting requires PHHC for prolonged periods, sometimes indefinitely. Pediatricians caring for these patients may need to interact with multiple PHHC agencies (some private or hospital-affiliated) caring for children or for children and adults. The pediatrician’s role within the PHHC process, although important, has not been well described, leaving potential gaps in care. In this qualitative study, we clarify the PHHC process and highlight key areas in which pediatricians can potentially facilitate care. Although targeted recommendations are offered, the utility of these recommendations will need to be tested with a nationally representative sample.

Our data suggest that pediatricians, especially inpatient pediatricians, are the foundation for PHHC initiation. Inpatient prescribers and their care teams must articulate a child’s home care needs, map available PHHC services onto those needs, write clear and timely prescriptions to initiate insurance authorization and PHHC-agency activation, and confirm that parent education, home evaluation, and equipment delivery occur. They are also responsible for handing off PHHC monitoring and maintenance to the outpatient pediatrician. For this transition to happen safely and successfully, the outpatient clinician needs a comprehensive discharge summary and a warm handoff from the inpatient team. We found that inpatient clinicians generally have little understanding of PHHC. Clear opportunities exist for the education of inpatient clinicians about local PHHC resources, how to optimize PHHC prescriptions, and how to promote continuity of PHHC management beyond the inpatient setting.

Clear role delineation among outpatient pediatricians and subspecialists helps increase efficiency, preventing gaps in care and duplication of work. Outpatient pediatricians in our study felt ill equipped to sign a plan of care for services initiated by inpatient prescribers, a situation that could be obviated by a warm handoff. They relied heavily on care-coordination staff to ensure that services were delivered. However, office-based care-coordination support is not universally available to primary care pediatricians; without those services, pediatricians are challenged to provide a medical home for patients with medical complexity.¹⁶  Care coordination allows pediatricians to anticipate needs rather than react to acute problems,¹⁷  which may avoid hospital readmission. Pediatricians without practice-based care coordinators may be able to collaborate with care coordinators assigned through the patient’s insurance, early intervention program, or PHHC agency.

Participants communicated the importance of involving the family, initiating the PHHC process early, and proactively investigating which services may be possible for individual patients. Qualifying diagnoses and needs vary among private and public insurance plans, yet PHHC is a mandated service under Medicaid’s Early Periodic Screening, Diagnostic, and Treatment program when a condition needing treatment is discovered during screening.^3,18  Prescribers can also increase a child’s access to PHHC by learning how best to write letters of medical necessity, how to facilitate insurance authorization, and how to respond to denials. Online resources exist to guide prescribers.¹⁹  Many pediatric training programs now offer complex-care clinical rotations to develop the skills future pediatricians will need to care for CMC.

Parents and professionals in this study identified the lack of a robust, well-trained, available PHHC workforce as a barrier to safe home care. Our findings support those of colleagues who noted that these deficiencies in PHHC quality and availability contributed to caregiver burden²⁰  and excess hospital days.^7,8  Pediatricians or care coordinators should ask how likely the designated PHHC agency is to staff the approved hours. They should also inquire about staffing continuity to help families anticipate filling in gaps or inquire about training new staff. Pediatricians should advocate for models of home health care that stress safety, build pediatric-centered skills, and continuously evaluate the competency of home health providers to care for children, as recommended for adults by the Institute for Healthcare Improvement.²¹ 

Pediatricians can help families understand the realities of PHHC. First, they should prepare families to become care coordinators and advocates for PHHC services for their child indefinitely. Second, connecting parents with other families with PHHC can provide peer mentoring about interviewing, hiring, and working with PHHC agencies. Grassroots organizations, such as Family Voices²²  and the Parent’s Place of Maryland,²³  can facilitate connecting families. Third, pediatricians can provide parents with local resources for respite care to help avert burnout from inevitable gaps in PHHC.

Our study has limitations. The sample is not nationally representative. Some inpatient physicians of patients who were CMC receiving PHHC declined to participate, citing a lack of knowledge about PHHC. Although we successfully recruited families from all 10 HRSA regions, rural areas were underrepresented. Although CMC may receive primary care from a family practice physician, none were represented in this sample. All participants spoke English. We likely interviewed parents who were skilled at advocating for their children; we may have overestimated how successful parents were in filling in the care-coordination gaps that occurred.

In this article, we provide a description of the process and identify barriers and facilitators of PHHC from the perspective of those who receive, provide, and prescribe these services. Targeting interventions to address the barriers and bolster the facilitators have the potential of improving the quality of PHHC.

We thank Rebecca Seltzer, MD, and the members of the Chronically Critically Ill (CCI) Working Group for their contributions to this work.

CMC

child/children with medical complexity

HRSA

Health Resources and Services Administration

PHHC

pediatric home health care