Home Care Trends

Numerous factors have influenced the shift toward home-based health care. Providing high-quality home health care for children generally requires parental desire and ability, professional assistance, and community preparedness (Rice, 2011). A natural family environment optimizes growth and development when stress is minimized and support is maximized.

Advances in medical technology have resulted in increased survival for children with congenital and acquired illnesses. Preterm infants or children who are ventilator dependent were once cared for indefinitely in an intensive care unit or long-term care facility. These children are now able to live with their families in their own homes (Feudtner, Villareale, Morray, and others, 2005). Safe and effective noninvasive ventilation modes and airway clearance devices and methods have also increased the home care of children with neuromuscular diseases. The survival of such children into adulthood has been enhanced by improvements in antibiotic therapy, evidence-based practices, more effective airway clearance techniques, and greater portability of technologic devices that were once impossible to transport into the home environment.

Children with cancer, kidney disorders, cystic fibrosis, spina bifida, cardiac and respiratory disorders, gastrointestinal disorders, neurodegenerative diseases, and human immunodeficiency virus (HIV) infection may have ongoing health care needs as a result of the disease, its treatment, or side effects of treatment (Balaguer and Gonzalez de Dios, 2008; Davis, 2006; Stevens, McKeever, Law, and others, 2006). Parents frequently face ongoing stressors after a child’s hospitalization for diagnosis and treatment. Subsequent needs may include reinforcing teachings about the disease process, addressing the child’s physical care needs, providing emotional support during this change in parental role, and teaching in a low-stress environment. Home-based nutrition programs are useful, safe, and well tolerated in children. Sufficient evidence indicates that these programs provide a better quality of life, decrease cost of therapy, and improve survival (DiBaise and Scolapio, 2007; Howard, 2006).

Improving the quality of life for both the child and the family is one of the driving forces in the efforts to move technology-dependent children from the hospital to the home setting. The concept of normalization describes the process whereby families of children with chronic illness over time begin to perceive the child and their family life as normal (Knafl and Deatrick, 2002). This has important implications for pediatric home care nurses in relation to the assessment of family function and understanding of family dynamics. The normalized family tends to be more flexible with treatments and incorporates the child with a disability or illness into the routines of daily living (Knafl and Deatrick, 2002). However, as part of this process, home care nurses should be aware that parents may experience chronic sorrow as a parental stressor. Gordon (2009) describes chronic sorrow as a normal grief response associated with a living loss (the loss of a healthy child) that is cyclical in nature. When encountering family expressions of chronic sorrow such as guilt and depression, home care nurses should develop evidence-based strategies to facilitate positive coping. Such strategies may include journaling, exercise, support groups, and professional counseling (Gordon, 2009).

The cost of care is an important factor in the health care delivery system today. Shorter inpatient stays are a reaction in part to the overwhelming cost of lengthy hospitalizations. Children either are not admitted to the hospital at all or are returned home as soon as possible after their illness. Home-based nursing care has decreased the length of hospital stays (Cooper, Wheeler, Woolfenden, and others, 2006). Shifting the financial burden from acute care to home care agencies is an attractive alternative to third-party reimbursers. Likewise, a portion of the financial burden is shifted to the family as caregivers. The family may be forced to absorb the costs of certain medications, supplies, transportation, shelter, utilities, food, laundry, housekeeping, and a portion of the nursing care. Over time, the care of chronically ill children can cause a financial burden to the family. Families may use up lifetime insurance benefits quickly, the primary caregiver may be unable to work, and many costs of health care are simply not covered by other means (Smith, Piamjariyakul, Yadrich, and others, 2010).

Home health care of children, however, is not restricted to children with chronic health care needs. Short-term intermittent therapies such as phototherapy, apnea monitoring, chemotherapy, and intravenous antibiotic administration may be successfully provided in a home setting rather than in an acute care setting. One study found that children who moved into an asthma-friendly home experienced large decreases in asthma morbidity and trigger exposure which often resulted in hospitalization (Takaro, Krieger, Song, and others, 2011). (See Asthma, Chapter 23.)

With the increased demand for nurses in home care and pervasive short supply, increasing attention has focused on the role of the family caregiver in providing home care. A recent survey by the National Alliance for Caregiving (2009) revealed that 30% of U.S. households have a person being cared for by another family member; this represents care above and beyond the daily routine care of the family household.

Primary caregiver responsibilities for the child in the home include:

Home care nurses should recognize family responsibilities as areas for potential stress and, again, assist family in finding resources for respite and positive coping.

The American Academy of Pediatrics (AAP) supports the philosophy of permanency planning, wherein children with special health care needs obtain permanent family placement and ongoing relationship with caring adults (Johnson, Kastner, and AAP, 2005). Within this framework, the child’s home environment with the child’s family is perceived as the best place for the child to be reared. If the family is unable to support the child because of poor resources or family structure, options include extended family members, birth family plus an unrelated family sharing parental responsibilities, or two unrelated families sharing parental responsibilities. In addition, adoptive families may participate in care of the child with special health care needs. The AAP further stresses the importance of providing the child’s family with adequate resources and support to promote family well-being (Johnson, Kastner, and AAP, 2005).

Respite care for caregivers of children with special care needs has been slow in its development and availability, although respite care centers are now common for adults. Respite care provides temporary relief to parents and allows a break from the responsibilities of caring for the child on a daily basis. Such care for ventilator-dependent children and those with skilled technologic care requirements is lacking throughout the United States. Respite care of children is still primarily done in the home. For example, a trusted and trained grandparent or extended family member along with private duty services may be called in to give the family a break from caring for the child.

Nurses can play an important role in advocating for the provision of high-quality respite care so families and caregivers can maintain appropriate family function, care for themselves, and continue to care for the child as necessary.

Effective Home Care

Providing home-based care for children gives the nurse an opportunity to assess and interact with the family in its environment. This assessment can provide the health care team with valuable information about safety, support systems, nutrition, parental ability, and actual health care practices. This valuable information will inform future decisions for individualized care and realistic outcomes.

Pediatric home care nurses have two distinct areas of implementation of care. Nurses who perform intermittent skilled nursing visits may see many different types and numbers of patients each day. These nurses typically have a caseload assigned to them and accept responsibility for implementing the care plan. This mode of nursing care is the most commonly used today as a result of personnel shortages and decreased reimbursement. Most home visits now focus on helping the patient and caregiver achieve independence with care in the home, including home care by therapists, home infusion teaching by nurses, and care management, rather than direct provision of physical care.

Nurses who perform private-duty nursing or block nursing are usually assigned individual patients, and they remain in the home for a predetermined time (e.g., 8- or 12-hour blocks). The care plan is implemented over the course of the time in the home.

Required nursing skills depend on patient need, parental ability, complexity of family, and the home environment. In both types of home care, the pediatric nurse is responsible for assessing the patient and family and evaluating the appropriateness of the care plan (Box 20-1).

Consideration of the caregiver’s willingness, ability, and limitations are of utmost importance when assessing the appropriateness of the care plan. It is vital to ensure that patients and families have adequate back-up support and access to resources such as social services. An increasing concern in pediatric home health care is obtaining a managing practitioner. Declining reimbursement and short hospital stays have increased patients’ rapid movement through the continuum of care. For example, a patient may be seen in the emergency department or neonatal intensive care unit and then discharged to home care without ever seeing a primary care physician. It is therefore imperative that the provision of care for home patients involves multidisciplinary cooperation and communication among health care workers.

From technology dependence to pain management to wound care, pediatric nurses are appropriate professionals to meet children’s health care needs at home. High-quality multidisciplinary care (e.g., a respiratory therapist and social worker) can have a significant, positive impact on family coping and child outcomes (Box 20-2) (Rice, 2006).

Discharge Planning and Selection of a Home Care Agency

Identifying appropriate local community resources is critical to a successful transfer to home care (Box 20-3). The ultimate goal of discharge planning is for the family to become familiar with the child’s needs and to be competent in providing that care. A discharge plan should include emergency management and provision of social and emotional support. General guidelines for discharge that allow for family individuality provide for ideal outcomes.

The AAP (Johnson, Kastner, and AAP, 2005) emphasizes that the goal for a home health care program for infants, children, or adolescents with chronic conditions or disabilities is the provision of community-based, culturally effective, comprehensive, and cost-effective health care within a nurturing home environment that maximizes the capabilities of the individual and minimizes the effects of the disabilities.

Much of the success of home care, particularly for children who are dependent on medical technology or who have complex medical problems, depends on careful planning and preparation. General principles of discharge planning and the transition to home care are presented in Chapter 26. Discharge planning must begin early; should be based on criteria of child and family readiness; must be a multidisciplinary process, including representatives from acute care facilities, home care, and community settings; and must involve the family.

Predischarge assessment (Box 20-4) and planning should include:

Early involvement of the home care agency in the discharge planning process promotes continuity of care and a smooth transition from hospital to home (Box 20-5). Before discharge, a general plan, sometimes called an individualized home care plan, should be developed with multidisciplinary input. This care plan should address the range of needs identified as part of the comprehensive predischarge assessment.

One method of providing home care instructions is with video recordings. After the family masters the procedures, consider recording their performance on video. Visual learning is most helpful for people who cannot read or who are not fluent in English. Additionally, Internet resources are encouraged.

The plans for transition from hospital to home should include family members (ideally two persons) both learning and demonstrating all aspects of the child’s care in the hospital. An in-hospital trial period, during which parents provide total care for the child, is generally beneficial. The home care nurse plays an important role in assessing this experience with the family. A predischarge home visit offers the home care nurse the opportunity to meet the family and help them assess their own preparedness and that of the home environment. It also helps them to discuss plans for arranging the child’s equipment at home (see Fig. 20-1), reinforce prior discharge teaching, and implement any additional teaching that is necessary (AAP, 2008).

A comprehensive discharge plan includes the care plan, specific written instructions to facilitate continuity, and detailed information about home care outcomes.

Care Coordination (Case Management)

Traditional definitions of case management generally focus on cost control, attainment of desired clinical outcomes, and monitoring and evaluation of care provided. However, for optimum home care of children who are technology dependent, case management (or care coordination) should be viewed more broadly.

Changes in health care over the past 3 decades have not only improved survival and decreased morbidity among children with special health care needs but also heralded higher costs for health care and services provided. As a result, insurance companies have focused on reducing services to contain costs. The advent of managed care and fee-for-service reimbursement has changed the outlook for families desiring to have the child in the home. Often services are provided by multiple organizations and multiple vendors with different missions and lack of consistent single systems linking home health care. In addition, eligibility criteria for receiving funding and services are complex and vary from one state to another. As a result, coordination of home care can be challenging, frustrating, and complicated for the family (AAP, Council on Children with Disabilities, 2005).

The concept of care coordination is to link children with special home health care needs (and their families) to services and resources in a coordinated effort to provide the child with optimum care (AAP, Council on Children with Disabilities, 2005). Care coordination has several purposes. Its primary goal is ensuring continuity for the child and family across hospital, home, educational, therapeutic, and other settings. Other goals involve facilitating timely access to services and enhancing child and family well-being. Care should be coordinated among multiple providers to reduce the complexity of care for the child, reduce fragmentation of care, prevent duplication of services, and decrease the burden of care for the family. Case managers from a number of agencies may be involved in the patient’s care, which may add to the parents’ confusion. The home care nurse may assume the role of care coordinator and should make efforts to coordinate all case managers for meetings with the family to minimize confusion and prevent duplication. Care coordination should ensure that the child’s medical, nursing, and health maintenance needs, as well as financial issues, psychosocial concerns, and educational needs of the child and family, are addressed (AAP, Council on Children with Disabilities, 2005).

Care coordination is most effective if a single person works with the family to accomplish the many tasks and responsibilities involved (Box 20-6). The nurse case manager should be knowledgeable about community resources, including:

With a greater focus on outcomes of home health care, the nurse case manager has to be resourceful and skilled in communication at a number of levels. A valuable tool for nurse case managers is the care path, which is a multidisciplinary care plan aimed at measuring the quality of patient care outcomes derived from standardized patient outcomes. The care path evaluates the quality of patient care with respect to cost-effectiveness and timeliness. (For samples of home care clinical care paths, see Rice, 2006.) Care paths may also be used to help nurses and other health care workers learn home care. Nurses should share care paths with the family members involved in patient care to provide direction and help the family see the eventual goals of care.

Although professionals must always see part of their role as ensuring that integrated, coordinated care is provided, care coordination should promote the family’s role as primary decision maker and enhance the family’s capability to meet the special needs of the child and the family unit. Families may choose to be involved to varying degrees in coordinating their child’s care. Many parents take on increasing responsibility for care coordination over time. Encourage and support families in this role. Home care nurses and case managers should be aware that the termination of private-duty or home care nursing can be a difficult transition for which families may need preparation. A gradual reduction in services provided allows patients and families to adjust favorably to the changes. Care coordination by office-based nurses for children and youth with special health care needs decreased emergency department visits and periodic office visits, thus significantly decreasing the cost of health care; increased health care costs were associated with more physician-dependent care coordination activities among such children (Antonelli, Stille, and Antonelli, 2008).