Family-Centered Home Care

Home Care

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. 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 home (Feudtner, Villareale, Morray, et al, 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; Magrabi, Lovell, Henry, et al, 2005; Davis, 2006; Stevens, McKeever, Law, et al, 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. There is sufficient evidence that these programs provide a better quality of life, decrease cost of therapy, and improve survival (DiBaise and Scolapio, 2007; Daveluy, Guimber, Uhlen, et al, 2006; 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).

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, et al, 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. 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 (Martinson, Widmer, and Portillo, 2002).

The American Academy of Pediatrics (2006) has issued statements supporting home health care of children by their families and urges policy makers, insurers, and government bodies to provide adequate coverage for children who require home health and for those who provide their care. Wilson, Moskowitz, Acree, and colleagues (2005) evaluated the cost of care for children with HIV being cared for at home; the cost of home care for these children was $9300 annually, whereas for children with other chronic illnesses requiring home care the annual cost was $25,900. The researchers further suggest that paid care only accounted for approximately 8% to 16% of the total care time and that informal care by relatives and other caregivers in the home represent a significant benefit not only to the child but also to society.

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 home care nurses providing asthma education to families of children hospitalized for an asthma exacerbation increased the family’s and caregiver’s knowledge about asthma symptoms, triggers, and management (Navaie-Waliser, Misener, Mersman, et al, 2004). A number of strategies can be implemented in the home setting to reduce the triggers that cause acute asthma exacerbations and often result in hospitalization. (See Asthma, Chapter 32.)

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.

Sullivan-Bolyai, Sadler, Knafl, and colleagues (2003) explored the literature on adult and pediatric family caregivers’ responsibilities in the care of a family member who has a chronic illness. Their review of the literature revealed four family-related caregiving responsibilities adapted from the adult literature that may be applied to children’s caregivers as well:

The researchers developed a multifaceted list of parent caregiving management responsibilities and associated activities that the home care nurse may use to facilitate discussions with parents and families regarding caregiving in the home and its unique requirements (Sullivan-Bolyai, Knafl, Sadler, et al, 2004). Nurses can use the results of this research to better understand the responsibilities facing the caregiving family and assist in finding resources to provide the family some respite from caring for the child to care for each other and maintain self and family integrity.

The American Academy of Pediatrics 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 American Academy of Pediatrics, 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. Should the family be 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 American Academy of Pediatrics further stresses the importance of providing the child’s family with adequate resources and support to promote family well-being (Johnson, Kastner, and American Academy of Pediatrics, 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. Such care for ventilator-dependent children and those with skilled technologic care requirements is lacking throughout the United States. Respite care provides temporary relief to parents and allows a break from the responsibilities of caring for the child on a daily basis. 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 (Parra, 2003).

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 (Thompson, 2000).

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 (Petit de Mange, 1998) (Box 25-1).

A major issue in providing home care in this era is the nursing shortage. Agencies and families are facing much more difficulty in staffing required home care services; thus more and more of the home care must be carried out by family members or other caregivers. According to some experts, the lack of pediatric training in some nursing programs, increased acuity of home care patients, and increased pay for nurses working in acute care settings have contributed to a greater than ever nursing shortage in pediatric home health care (Page, 2001). Greater demand for home care due to an increasing elder population, in combination with the effects of a nursing shortage, negatively affects home health care more than other health care areas, according to some experts (Carter, 2009). An increasing trend, resulting from the nursing shortage and limitations in reimbursement, is providing short-term treatment for patients in nonhospital ambulatory settings (such as ambulatory infusion centers).

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 involve multidisciplinary cooperation and communication among health care workers.

From technology dependence to pain management to wound care, pediatric nurses are appropriate professionals to meet a child’s health care needs at home. High-quality interdisciplinary care can have a significant, positive impact on family coping and child outcomes (Box 25-2) (Betz, 2000).

Discharge Planning and Selection of a Home Care Agency

Identifying appropriate local community resources is critical to a successful transfer to home care (Box 25-3). 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 American Academy of Pediatrics (Johnson, Kastner, and American Academy of Pediatrics, 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 the child who is dependent on medical technology or who has 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 25-4) and planning should include:

Creative financial planning, including negotiating arrangements with the insurance company, health maintenance or managed care organization, and public programs, may be required.

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 25-5). 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. Once 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.

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 (Fig. 25-1), reinforce prior discharge teaching, and implement any additional teaching that is necessary (American Academy of Pediatrics, 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 the monitoring and evaluation of care provided. However, for optimum home care of the child who is technology dependent, case management (or care coordination) should be viewed more broadly.

Changes in health care over the past three decades have not only improved survival and decreased morbidity among children with special health care needs, but have 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 (American Academy of Pediatrics, 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 (American Academy of Pediatrics, 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 (Lindeke, Leonard, Presler, et al, 2002). 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. Lindeke, Leonard, Presler, and colleagues (2002) proposed that the ideal situation is when the family serves as lead care coordinator within the context of family-centered care. 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 (American Academy of Pediatrics, 2005).

Care coordination is most effective if a single person works with the family to accomplish the many tasks and responsibilities involved (Box 25-6). The nurse case manager should have a minimum of a baccalaureate degree in nursing and 3 years’ experience (American Nurses Association, 1998). The nurse case manager should be knowledgeable about community resources, including (Thompson, 2000):

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 (Rice, 2006). 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 (Rice, 2006).

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).

Role of the Nurse, Training, and Standards of Care

The home care nurse must share a level of technical expertise with the critical care nurse while being able to adapt equipment, procedures, and the nursing process to the home setting. (See Chapters 27, 28, and 31 and many citations in the references for specific technical skills that may be required in home care practice.) The need for technical expertise must be matched by knowledge of child development and the ability to work creatively with the child who is challenged by chronic illness and technology dependence. When practicing in the home, the home care nurse must be comfortable making independent nursing judgments and problem solving with no immediate assistance. At the same time the nurse must have excellent interpersonal skills, an ability to work with other professionals and the family, and, most important, respect for family autonomy. Patient outcomes are more readily achieved with a balance of nursing skills that demonstrate clinical excellence; adaptability; accountability; and the ability to develop positive relationships with patients, families, and practitioners (Petit de Mange, 1998) (Box 25-7).

When working with a home care agency, nurses should expect to receive patient placements appropriate to their expertise. They should also expect to receive orientation to the skills and knowledge base of the home care nursing specialty and subsequent continuing education to develop as expert practitioners. The minimum initial orientation should include the individual patient’s care plan and equipment needs; the agency’s policies and procedures, including procedures for addressing any problems that may occur when care is provided in the home; legal liability issues; and documentation procedures. The orientation should place strong emphasis on issues specific to home care. For example, the nursing care plan should be based on information obtained about the environment, family dynamics, and health-related behaviors. The multidisciplinary care path may assist nurses, technicians, other health care providers involved in the child’s care, and the family, serving as a focal point for achievement of patient and family outcomes.

Reimbursement-driven documentation in home care differs from documentation practices in the hospital setting. Increasingly, documentation must be written in specific ways to qualify for reimbursement.

Supervision of practice, including occasional site visits by a nursing supervisor, should be provided. Mentoring or precepting is ideal. Because of the unique practice environment of home care nurses, it is important for an agency to facilitate sharing among peers to decrease work-related stress, increase job satisfaction, and support high-quality patient care.

Nurses in pediatric home health face increasing demands for providing high-quality care with fewer resources to achieve positive patient outcomes. In doing so, the nurse often must rely on delegation skills to adequately ensure the patient and family receive the necessary care. Delegation often involves assigning nursing tasks to other health care workers (Timm, 2003).

Public or private home care agencies that participate in the Medicare or Medicaid programs must be certified by a federally designated state certification body and abide by federal and state regulations. Additionally, the American Nurses Association has developed standards of nursing practice for public health and home care nurses (American Nurses Association, 2007a, 2007b). Generalist and clinical specialist certification in both home health and community health is offered by the American Nurses Credentialing Center,* a subsidiary of American Nurses Association. The Hospice and Palliative Nurses Association offers certification in hospice nursing. Despite important differences between pediatric and adult care in the home, as of this writing no national standards specific to pediatric home care practice have been developed. Nursing practice in pediatric home care should be guided by published guidelines, textbooks, peer-reviewed articles, and written standards of care for pediatric patients. Professional nursing organizations such as Infusion Nurses Society, National Association of Neonatal Nurses, Society of Pediatric Nurses, Association of Pediatric Hematology/Oncology Nurses, National Association of Pediatric Nurse Practitioners, and others have published standards of care that apply to pediatric home health nursing practice (Box 25-8). In 2009 the National Consensus Project for Quality Palliative Care published the second edition of Clinical Practice Guidelines for Quality Palliative Care, available at www.nationalconsensusproject.org/guideline.pdf. These guidelines provide a description of palliative care services that includes children and their families.

A quality improvement program is an important component of an effective home care agency. Evidence-based practice is rapidly becoming an important aspect of home health care, as is benchmarking, in which the product or practice (in this case, patient outcome) is compared with other agencies’ outcomes and practices to determine best practice; this allows agencies to see how they measure in comparison to other similar agencies (Wilson, 2003; Yoder-Wise, 2007). The OASIS (Outcome and Assessment Information Set), as part of Medicare, has been established for adults in home health care; however, as of this writing no such data exist for children younger than age 18 years. As a part of OASIS, home health care quality measures have been established to measure patient care outcomes for Medicare reimbursement purposes. Other certification and licensing organizations that may oversee and regulate practice in home health include The Joint Commission, Centers for Medicare and Medicaid Services, Occupational Safety and Health Administration, and Community Health Accreditation Program. The Health Insurance Portability and Accountability Act of 1996 guidelines affect the manner in which patient records are handled in home health care to ensure patient confidentiality (Wilson, 2004).

1. Home as familiar—the environment where one is comfortable and at ease because of the familiarity with living arrangements and routines of home

2. Home as center—the location of everyday experiences related to time, space, and one’s social life

3. Home as protector—the preservation of privacy, safety, and identity in the environment of the home

Diversity in Home Care

Respect for varied family structures and for racial, ethnic, cultural, and socioeconomic diversity among families is essential in home care. Home care nurses work in close relationship with family members throughout the course of an illness (see Family-Centered Care box). The nurse must assess and respect the family’s background and lifestyle choices. Pay particular attention to communication. The meaning of the words used and the way in which they are said may affect various cultural groups in different ways. Take volume of speech and language style into consideration as part of a family cultural assessment.

The home care nurse must also pay particular attention to nonverbal communication. Body language, eye contact, and degree of physical contact have different meanings within a particular culture.

Families may also differ in their cultural view of children, health care, childrearing practices, illness, and its causes and meaning. The family’s health care practices and beliefs may influence the level of investment a family makes in the child’s care. The family’s religion or spirituality also can have a major influence on a family’s response to the child’s special health care needs. Some families look for spiritual meaning and purpose for the illness. Other families may choose to reject past religious ties. In some cultures, religion and beliefs about health care and illness are closely intertwined (McEvoy, 2003); thus it is important that home care nurses assess the relationship between culture, religion, and the family’s beliefs about the child’s illness (see Community Focus box).

A variety of cultural assessment tools are available (Andrews and Boyle, 2007; Giger and Davidhizar, 2002). The home care nurse, aware that personal values drive behavior, needs to learn about the family’s culture, ask questions without implying judgment, interpret the mainstream medical culture for the family, and help families design interventions that meet their preferences. When possible, use culture-specific teaching materials. In the United States there is an increased emphasis on health care workers becoming culturally competent to better understand and effectively deliver holistic care to the patient populations they serve (National Center for Cultural Competence, 2002) (see Complementary and Alternative Therapy box).

Respect for family diversity and an awareness of the family’s stages of development and of adjustment to a child’s illness assist the home care nurse in recognizing and promoting family strengths and in respecting various coping mechanisms. Labels such as dysfunctional, difficult, and noncompliant can reinforce negative expectations and shape the behaviors of both parents and professionals. On the other hand, identifying, emphasizing, and building on family strengths and coping mechanisms are strategies that promote a central goal in nursing care of the child and family: family empowerment. The home care nurse working with families should remain flexible and open minded because new family strengths may emerge over time and coping mechanisms may wax and wane with the stresses of caring for a child with serious or multiple problems.

Parent-Professional Collaboration

Family-centered nursing practice is built on a foundation of parent-professional collaboration, which represents a shift from the traditional unidirectional relationships between health care providers and families. The Collaborative Family Healthcare Coalition has developed core competencies for professionals collaborating with families (McDaniel and Campbell, 1996). Collaborative caring allows the nurse and family to work together and share outcomes in a deep and meaningful way. This approach, essential in the home care setting, is characterized by the following (Kellett and Mannion, 1999):

Communication with the family should not be intrusive. There is no need to collect information from the family that can be obtained from the child’s records. The nurse should explain to the family the reason for questions, particularly those that the family may perceive as intrusive, and should tell families who will have access to the information. The nurse must also assure families that they have a right to expect confidentiality in regard to the data collected. When working in the home, the nurse must respect the privacy of family communications that may be overheard.

Communication with family members should include sharing with the family, in a supportive manner, complete and unbiased information about all aspects of the child’s condition and care. Parents often feel overwhelming frustration when trying to obtain accurate information about their child’s illness and its management. Parents want information given slowly and repeated as necessary over time; they want explanations in terms they can understand; and they want the opportunity to ask questions, which should be answered in a straightforward manner. Stating “I don’t know” or “I’ll find out” is better than pretending to know or giving excuses. Unfortunately, the home care nurse may become a source of added stress on the caregiver or family when the nurse displays unprofessional attitudes or fails to show proper respect for the family’s knowledge of the child’s needs and care (Harrigan, Ratliffe, Patrinos, et al, 2002).

Nurses can make plans with the parents to gather relevant information when necessary (Newton, 2000). Nurses should share information with families in a way that has meaning in their cultural context. Many parents report a preference for interactions with professionals who communicate empathy and concern (Harrigan, Ratliffe, Patrinos, et al, 2002). Families vary in the amount of information they prefer regarding their child’s status.

Home care nurses should restrict their communications with other professionals to clinically relevant information about the family.

On occasion, parents and nurses may disagree about proper procedures for the child’s care. Nurses should respect parental preferences in any situation that does not pose danger or risk for the child (see Family-Centered Care box). If parents wish to alter a treatment plan that is part of medical orders, the nurse should ask that they negotiate the change with the practitioner because the nurse must follow the written medical orders. If they cannot resolve disagreements, contact a home care supervisor or case manager (care coordinator) to assist with problem solving. Increasingly, home care agencies are developing ethics committees and policies for managing difficult situations such as treatment refusal (see Critical Thinking Exercise).

A tool that might be helpful to the pediatric home care nurse is the Caregiver Strain Index, a 13-item assessment designed to ascertain caregiver stress and subsequently develop appropriate strategies for individual and family coping (Sullivan, 2003). For further information on conflict resolution, see Askew, Williams, Rachel, and colleagues (2008).

In addition to maintaining a sense of control over their child’s care, families need to control their home and personal lives. For this reason, nurses should discuss “house rules” with the family and address issues such as the physical environment, private areas in the home, responsibility for maintaining the child’s environment, and interactions with siblings (see Nursing Care Guidelines box).

Home care nursing encourages a close and rewarding relationship with the family. One of the most important aspects of this relationship is maintaining professional boundaries and a therapeutic role that is supportive of the client and family but does not cross the line of nursing professionalism (Wright, 2006) (see Critical Thinking Exercise).

The Nursing Process

The most recent American Nurses Association (2007a) standards for home health care nursing practice include six standards of practice, which are the components of the nursing process: assessment, diagnosis, outcomes identification, planning, implementation, and evaluation (Gorski, 2008). In the home the family is a partner in each step of the nursing process. Assessment should address family strengths and resources, as well as the child’s health status (Box 25-9).* (See Box 6-8.) The principles of communication discussed previously guide data collection. The nurse shares observations neutrally, without value judgment, and in a way that preserves the family’s own role in decision making.

All information gathered as part of the assessment process is shared with the family. The nurse should recognize that the family’s perception of their most important need will generally guide their behavior and consume their attention and energy. Family priorities should guide the planning process.

The nurse should outline both short- and long-term goals, and the child, family, and professionals involved should agree on them. The care plan should integrate various disciplines that may be involved with the child to eliminate duplication and coordinate and consolidate care requirements. Cross-training of professionals and a multidisciplinary mode of treatment is also useful when a child has multiple and complex care requirements. For example, certain physical or occupational therapy routines may be incorporated into the child’s morning nursing procedures, or speech therapy interventions may be conducted by the parent or nurse around eating times so that the entire day is not occupied by procedures. A written schedule of daily routines should be developed and followed by all caregivers. Ratcliff (2007) stresses the importance of the written care plan for the ventilator-dependent child in the home to ensure that the care being given is consistent; written instructions regarding the frequency of equipment cleaning, chest physiotherapy, and reused versus discarded supplies assist in providing consistent care.

Goals of care and achievement of established outcomes are supported by intervention strategies that reflect normalization (see Chapter 22) and the interests and abilities of the child and family. Nurses can help the family explore a range of alternative strategies, services, and resources so that the family can choose the best match for their situation.

Family participation in evaluating a home care plan can occur on several levels. Families and care providers should regularly review the goals of care and update the care plan as required. The nurse can ask the family open-ended questions at regular intervals to assess their opinions on the effectiveness of care. As part of the evaluation process, acknowledge families for their successes and accomplishments. Finally, give families an opportunity to evaluate individual home care nurses, the home care agency, and other service providers periodically. The evaluation should address the nurse’s knowledge, skills, and respect for the family’s choices. The agency should use these evaluations to improve quality of care (see Family-Centered Care box).

Technologic trends that influence the nursing process in home care include the use of laptop computers (notebooks) to document the home visit and mobile telephones and other small hand-held computers that store large amounts of data, including addresses, appointments, patient tracking systems, textbooks, and pharmacologic databases (Lewis and Sommers, 2003). Internet and e-mail services, which increase patient-practitioner accessibility and communication, and telemedicine or telehealth, which has various features, including electronic systems that can transmit physiologic data directly to the practitioner via the telephone, also influence the nursing process (Cady, Kelly, and Finkelstein, 2008; Vasquez, 2008). Telephone triage has become standard in many health care institutions, and standards for pediatric triage have been published elsewhere. Concerns with the increasing use of technology in health care are cost, governmental regulations and patient care standards, liability and malpractice issues, ethics, and confidentiality matters (Rice, 2006). In addition, the use of any technology raises concerns regarding the nurse-patient relationship (high tech–low touch) and the nurse’s role.

Promotion of Optimum Development, Self-Care, and Education

There is little question that living at home offers most children with complex medical problems great social and emotional advantages over living in the hospital or other institutional setting. However, in infancy and throughout the developmental stages, a child’s medical condition and dependence on medical technology can place constraints on and pose challenges to normal development. For example, the child may have lengthy and repeated hospitalizations; developmental regression can occur in response to stress; fatigue may result from an underlying pathologic condition, the exacerbation of an illness, or medication side effects; and equipment requirements may impede mobility, exploration, and independence. The challenge of providing support for normal development in a child who is chronically ill and technology dependent is to maximize the opportunities for developmentally appropriate experiences while respecting the limits of the medical condition and the equipment requirements.

Home care plans are designed to promote optimum child development through assessment, planning, and referrals and through interventions that address normalization issues and self-care (Box 25-10). General principles for a family-centered assessment and planning process are addressed earlier in this chapter and are also applied in developmental assessment and planning.

Some parents may not pursue early developmental intervention because they do not believe their child needs the services. In this case professionals need to explain the child’s developmental needs in ways that are meaningful from the parents’ own cultural and socioeconomic perspectives. Only then can parents make truly informed decisions. Once parents have been fully informed of the child’s condition, likely developmental sequelae, and the expected benefits of intervention, developmental goals outlined by the child and family should guide planning and intervention.

Several principles underlie the appropriate developmental intervention plans for children with complex medical problems. First, understanding a child’s medical condition ensures that the nurse and family can plan to maximize developmental opportunities at times when the child has the most energy and endurance, while noting stress signals that determine the child’s tolerance for type, intensity, and duration of activity. Second, plans for developmental support must be flexible and tailored to the individual child’s abilities, interests, and needs. Third, familiarity with the child’s medical equipment facilitates the planning of creative ways to meet the child’s developmental needs. For example, the use of lengthy oxygen tubing allows the active toddler freedom of movement during the day (Fig. 25-2), portable equipment of any type facilitates family outings, and mounting a ventilator to a wheelchair allows the school-age child and adolescent greater independence.

Chapter 22 discusses the impact of chronic illness on development. Behaviors that the nurse may observe in children receiving home care that need to be addressed include:

Promoting coping and capability can reduce stress and contribute to mental health and self-esteem in a child with a chronic illness. The extent to which a child is involved in his or her own care depends on many factors, including parental comfort and support and the child’s developmental age, level of interest, and physical ability. Self-care, both in activities of daily living and in regard to the medical condition, is important. The goal for self-care in activities of daily living should be attaining age-appropriate competence. Some modifications in the environment, the medical equipment, or the techniques for daily activities may be required to promote and support self-care. Effective teaching for self-care focuses on the child’s own level of conceptual understanding. The nurse can enhance teaching through the use of dolls, other models and diagrams, simple explanations, and repetition.

Educational planning is important for the child who has a chronic medical condition. Federal laws ensure that all children receive a public education. Before age 3 years, children with developmental delays are eligible for an early intervention program. The child can receive rehabilitation therapies as appropriate (physical, occupational, or speech therapy). After age 3 years, the local school system is responsible for providing this education. Some children may be eligible for special education preschools. The home care nurse should refer the family to local educational programs.

Each family is entitled to an individualized family service plan (IFSP), or individualized care plan, to help ensure early intervention. All states in the United States provide agencies that develop IFSPs; each state’s plan can easily be accessed on the Internet by entering the term individualized (or individual) family service plan in an Internet search engine such as Yahoo or Google. The IFSP provides the child with a disability, from birth to age 3 years, with a plan for integrating early intervention and rehabilitation, based on the child’s and family’s needs.

When a child requiring special medical care is to be placed in an educational setting, the parents, child, school health coordinator, educational evaluation team, and education and administrative staff should meet to determine safe and appropriate placement and the necessary services and personnel to enable the child to attend school in the least restrictive environment. Training of education staff and caregivers is essential to ensuring the child’s safety in the educational setting.* Special assistance can also be beneficial in reintegrating previously schooled children, such as those with cancer, into the school setting. The home care nurse may need to assist parents in developing the skills necessary to advocate effectively for their child in the educational system.

Safety Issues in the Home

Safety is an important consideration in pediatric home care, and the nurse should include this in the home care plan.

The telephone and electric companies (if the use of medical equipment requires electricity) must be notified to place the family on a priority service list. In this way the family will learn of any anticipated interruptions in service and will receive priority in reinstatement of interrupted services. Prior contact with rescue squad and local emergency facility personnel can help ensure prompt and appropriate interventions if required. This is especially important if the family lives in a rural location that may not be familiar to local emergency responders. It is recommended that a map be given local authorities with key landmarks and intersections for rapid access to the home.

Before hospital discharge, develop and review emergency protocols with the parents and professional caregivers. Once an emergency plan is developed with the family, it is helpful to print this up and have it in a central location for easy access and referral. The emergency plan should include assigned responsibilities (family members). In the case of a technology-dependent child, it may be helpful to have a fire drill evacuation on occasion to work out any problems in the system. Performing the skill rather than just discussing the actions may help participants in time of emergency recall the steps involved. Post cardiopulmonary resuscitation guidelines, if appropriate, near the child’s bedside or in another accessible location. Place a list of emergency telephone numbers near each home phone and include the numbers of the rescue squad, emergency department, managing physician(s), nursing agency, and equipment vendor(s) or providers. Additional issues to consider are advance directives and out-of-hospital do-not-resuscitate orders (may vary by state), as indicated. If the patient and family desire an advance directive to be enforced, specific guidelines must be followed and could potentially prevent undesired lifesaving measures for children with terminal illnesses.

Infection control in the home setting should not be overlooked. Although the child may be exposed to fewer organisms than in the acute care setting, it is still important to maintain “clean” and “dirty” areas to protect the child, family members, and caregivers. Needle and sharps disposal should be a priority in home care (see Community Focus box). The home health care agency should have in place policies and procedures for infection control in relation to disposal of contaminated dressings and sharps for the protection of its employees. Impenetrable needle disposal containers should be available for the protection of those in the household and the community. Hand hygiene is the cornerstone of infection control, and the nurse and family should identify appropriate areas and items in the home setting for hand hygiene to be carried out with ease. Personal protective equipment may be required in some cases; these items should be available to the caretakers as well as the nurse. Some medical equipment may be washed with an appropriate disinfectant and reused to decrease cost of care; however, appropriate infection control practices should not be compromised to save money.

Another aspect of safety relates to the provision of care by appropriately trained individuals. Family members should receive thorough training in the child’s care requirements and have the opportunity to demonstrate knowledge and confidence before hospital discharge. Children with complex medical care needs are often admitted to an acute care center for nonmedical reasons, including parents’ lack of training and inability to care for a child with complex medical needs (Schanwald, 2005). One study found that although technology-dependent children cared for in the home received adequate care, the time demands of such care had negative effects on the caregiver’s school, employment, and social life; a shortage of skilled caregivers often leads to disrupted sleep patterns and increased stress (Heaton, Noyes, Sloper, et al, 2005). Professional staff caring for the child should have the appropriate background and training for the child’s particular care needs (Boroughs and Dougherty, 2009). Because of the child’s body size, special skill and caution are required in the performance of procedures (e.g., gastrostomy feedings, tracheostomy suctioning) and in monitoring the use of equipment (e.g., ventilator settings, intravenous flow rates, and total fluid volumes) (see Chapters 27, 28, and 31) (Fig. 25-3).

The activity level and curiosity of young children raise additional safety considerations in the provision of home care. All medications, needles, syringes, and contaminated materials must be securely stored well out of the reach of curious hands. Make arrangements for the disposal of sharp items or contaminated materials with the home health agency. Pay special attention to childproofing the control panels on ventilators, pumps, monitors, and other equipment. The use of clear plastic tape, covers, or panels to cover control knobs or buttons reduces the risk of accidental changes in settings. Much of the medical equipment now in use has special lock-out capabilities to prevent someone from accidentally altering settings. Keep electrical cords short and out of reach, and use safety covers on any open outlets. Unplug equipment when not in use, and store any wires (e.g., lead wires for an apnea monitor) out of reach. (See Chapter 13 for use of apnea monitors in the home.)

Care at night poses other safety concerns. Parents or other caregivers need to be able to clearly hear monitor, ventilator, or pump alarms at night. They can use an inexpensive intercom system or baby monitor. Take steps to prevent accidental strangulation by apnea, oximeter, or cardiac monitor wires or lengthy intravenous tubing during sleep.

Safe transportation is a vital concern. Wheelchairs and other medical equipment must be properly secured to the vehicle, including vans and buses. Appropriate child restraints must be used. If necessary, an extra adult should be present to monitor the child while in transit. Information on car seat safety and transportation for children with special needs is available from Riley Hospital for Children at 800-KID-N-CAR. See also American Academy of Pediatrics (1999) reference for guidelines for wheelchairs in cars, supine car seats, and equipment transportation. The American Academy of Pediatrics (Bull, Engle, and American Academy of Pediatrics, 2009) has recently issued new guidelines for the safe transportation of preterm and low-birth-weight infants as well.

Family-to-Family Support

Family-to-family support networks can be an important source of emotional and instrumental support and empowerment for families of children with chronic health problems. (See Establishing a Support System, Chapter 22.) Family-to-family support does not replace professional sources of support but rather is a unique resource that promotes family strengths through shared experience.

Families will most likely experience increased emotional stress as the result of living with and caring for a child with special needs. Parents and families of technology-dependent children reported that they felt isolated from the community when caring for the child in the home; the parents believed the community as a whole was not supportive of the child’s needs, suggesting that the child’s life was not worth maintaining. The families reported an overall theme in their lives of living daily with distress and enrichment (Carnevale, Alexander, Davis, et al, 2006).

Identifying meaningful sources of support can make a difference in coping abilities. Montagnino and Mauricio (2004) surveyed a group of mothers who were providing home care for children with a tracheostomy and gastrostomy. The researchers found that the mothers experienced significant anxiety, and social interaction within and outside the family was disrupted as a result of the child’s condition. The authors recommended that families of children with special health care needs network with other parents in similar conditions through online and local support groups to prevent social disruption and maintain a sense of family normalcy despite the child’s condition.

Baum (2004) surveyed caregivers of children with special health care needs about the value of an Internet parent support group. The researcher used stress and coping theory as a guide for measuring perceived satisfaction and a number of other characteristics. The survey indicated that parents were satisfied with the information obtained through the Internet support group, and improved caregiver-child relationship was the strongest outcome factor. The author suggests that undesirable results may also be obtained via such an Internet group and that the quality of such support groups should be carefully evaluated by those involved.

The nurse can assist the family in increasing their involvement in community social networks. For example, a referral to a parent support group may meet an individual family’s needs. The nurse should inform the parents of the group’s goals so that the family can determine whether they might benefit from this connection. In addition, informal support networks can be extremely beneficial. A link to a family in the same or a similar situation allows the sharing of common experiences. This in itself may decrease the sense of isolation and provide a connection with someone who can really identify with family struggles. Positive outcomes can include understanding, empathizing, problem solving, or just talking to someone who will listen.

The nurse should remember that the needs of each family member differ. The care plan should acknowledge each family member’s needs (mother, father, siblings, grandparents). Peer support for school-age children and adolescents with complex care needs may be beneficial. These connections can include letter writing, e-mails, telephone calls, or specialty camping programs (Johnson, Ravert, and Everton, 2001). Most school-age children and adolescents just want to be accepted by their peers and fit in as a part of the group. Same-age peers may at first be distant to children with disabilities, but this is likely out of fear and lack of understanding. Helping others see that they have the same dreams, desires, goals, and interests promotes group cohesiveness and understanding.

Key Points

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