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Home care of children and youth requires multifaceted approach
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A growing number of children with complex medical issues and technology dependencies are discharged to home care, and it is essential that pediatric caregivers develop a coordinated and interdisciplinary approach to addressing children’s continuing health care needs, according to the American Academy of Pediatrics.
In a clinical report, Ellen Roy Elias, MD, Nancy A. Murphy, MD, and the AAP’s Council on Children with Disabilities Executive Committee wrote that advances in neonatal, pediatric and surgical care have led to the survival of a greater number of children, and long-term hospitalization of children and youth with complex medical problems is no longer a preferred option in today’s society.
“As the acuity of hospitalized children has increased over time, so too has the severity and complexity of the unresolved medical conditions present on discharge,” they wrote. “Children are now frequently sent home to complete or continue interventions that formerly would have occurred in hospitals.”
The needs of the child and the available resources to commit to home care should be evaluated well in advance, according to the report, and a frank appraisal of the family’s desire to provide that complex care is essential. The authors provided some necessary steps to prepare for home care before hospital discharge, which included:
- Ensuring the child is medically stable for home care and that the family desires to care for the child at home. The family must also have the necessary skills and resources, and they must consider palliative care and end-of-life options.
- Providing an adequate, safe and accessible home environment, with the necessary electrical wiring. There must be access to bathrooms and other living spaces, and the home must provide heat, hot water, a clean water supply and air conditioning. The driveway must be accessible, and the house must have working telephone access.
- Determining if the community has available resources and support systems such as a community health nurse, home care nurses, therapists (physical and occupational therapy), emergency medical services, specialty care, medical supply vendors, pharmacies, school or early intervention programs, counseling, support groups and palliative and hospice care where appropriate.
- Arranging for a primary care physician and developing a communication network, as well as ordering medications, equipment and disposable supplies. An advance plan of care including a do-not-resuscitate order should also be developed where appropriate.
- Parents or other caregivers must be trained to provide the proper home care; this includes a training schedule and actual care with supervision (trial home care).
- Arranging home care nursing and developmental and educational services. Nursing care coverage should be outlined and alternative plans should be made if nursing care is unavailable. Arrangements need be made with school or preschool programs for continuing education.
- Locating home care agencies for supplies and equipment.
- Verifying that adequate insurance coverage is provided, pursuing alternative or additional coverage (Medicaid waiver program and SSI) and evaluating the family’s ability to pay for uncovered care such as transportation, electricity, etc.
Although discharging a child to home care is a complicated process, sustaining a child’s home care can be an even greater challenge, according to the report.
“The most common reasons for failure of home care are the lack of community and family resources, lack of financial resources, and emotional depletion of the family,” the authors wrote. They illustrated several issues associated with caring for children with complex and chronic conditions at home:
- Providing a regular review of the home care discharge plan to assess whether those goals have been met, unmet or changed.
- Assessing the child’s physical condition, the appropriateness of current nursing care, developmental issues and advance care planning.
- Reviewing the family’s strengths, identifying problems and ensuring the adequacy of current services.
- Managing the financial paperwork, including policy benefit changes and family finances, and determining whether there is adequate insurance coverage.
- Identifying and tracking the family’s current needs for equipment, supplies and medications.
- Ordering diagnostics with the appropriate interventions and making referrals to specialists.
- Making follow-up appointments with the PCP and specialists, coordinating appointments and medical procedures and communicating with subspecialists in a timely fashion to address the child’s changing needs.
Children with complex medical and developmental issues are discharged to home care with a growing range of medical and technology dependencies, according to the report. “Medical homes for children with complex home care needs must coordinate a team of providers toward the overarching goal of optimizing each child’s health, development and well-being,” the authors wrote.
The guidance offered in this report does not suggest an exclusive course of treatment. Variations of the material and taking into account individual circumstances may be appropriate.
Disclosure: The authors report no relevant financial disclosures.
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