Family-Centered Home Care

HOME CARE TRENDS

The shift toward home-based health care is propelled by numerous factors. 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 minimum 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, and others, 2005).

Children with cancer, kidney disorders, cystic fibrosis, spina bifida, cardiac anomalies, gastrointestinal disorders, neurodegenerative diseases, and human immunodeficiency virus infection may have ongoing health care needs as a result of the disease, its treatment, or side effects of treatment (Magrabi, Lovell, Henry, and others, 2005; Nazer, Abdulhamid, Thomas, and others, 2006; Stevens, McKeever, Law, and others, 2006). Parents frequently have 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 (Daveluy, Guimber, Uhlen, and others, 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 assessing family function and understanding 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 due 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 stay (Cooper, Wheeler, Woolfenden, and others, 2006). 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 chronically ill children can cause a financial burden to the family (see Evidence-Based Practice box).

Home health care of children, however, is not restricted to children with chronic health care needs. Several short-term intermittent therapies such as phototherapy, apnea monitoring, and intravenous antibiotic administration may be successfully provided in a home setting rather than in an acute care setting. A recent study found that home health 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, and others, 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 23).

With the increased demand for nurses in home health and continued 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 (2005) revealed that 21% 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 others (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:

Managing the illness—providing daily hands-on care, monitoring the child’s medical condition, and educating others to care for the child

Identifying, accessing, and coordinating resources—locating appropriate resources in the community to meet the needs of the child and of the family as the child’s caregiver

Maintaining the family unit—continuing to nurture the family unit: siblings’ needs, husband-wife relationships, and maintaining the household

Maintaining self—grieving the loss of the healthy child; balancing caregiver responsibilities with own physical, emotional, mental, and personal needs; recognizing stressors and potential caregiver burnout

The researchers developed a multifaceted list of parent caregiving management responsibilities and associated activities that the home health nurse may use to facilitate discussions with parents and families regarding caregiving in the home and its unique requirements (Sullivan-Bolyai, Knafl, Sadler, and others, 2004). Nurses can use the results of this research to better understand the magnitude of 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 Committee on Children with Disabilities, 2005). Within this framework, the 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 as a result 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 Committee on Children with Disabilities, 2005). In addition, primary care physicians play a vital role in the process of care coordination in collaboration with the family and nursing home care team (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 (Parra, 2003). Respite care provides temporary relief to parents and allows for a break from the responsibilities of caring for the child on a daily basis (Parra, 2003). 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 provide for the care of 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 information will inform future decisions for individualized care and realistic outcomes (Thompson, 2000).

There are two distinct areas of implementation of care for the pediatric home care nurse. 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 amount of 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 are determined by patient need, parental ability, family structure, and the home environment. In both types of home care, the pediatric nurse is responsible for patient and family assessment, evaluating the appropriateness of the care plan (Petit de Mange, 1998) (Box 20-1).

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 Page (2001), 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. An increasing trend resulting from the nursing shortage and limitations in reimbursement is to have patients receive short-term treatment in non–hospital 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 (Box 20-2). 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; a patient may be seen in the emergency department or neonatal intensive care unit, then discharged to home health 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.

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. The American Academy of Pediatrics (Johnson, Kastner, and American Academy of Pediatrics Committee on Children with Disabilities, 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 20-4) and planning should include the following areas:

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 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.

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. After a successful trial, the family may benefit from taking the child home on a brief pass before making final discharge plans. (Although this arrangement is ideal, most insurance companies will not approve payment for such a visit.) The home care nurse plays an important role in assessing this experience with the family. Whether or not the child is taken home on a pass, a predischarge home visit allows the home care nurse to meet the family, help them assess their preparedness and the preparedness of the home environment, discuss plans for arranging the child’s equipment at home (Fig. 20-1), reinforce prior discharge teaching, and implement any additional teaching that may be necessary (Bakewell-Sachs, Carlino, Ash, and others, 2000). 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 two decades not only have improved survival and decreased morbidity among children with special health care needs, but also have 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 a consistent lack of single systems linking home health care. In addition, eligibility criteria to determine the availability of 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, and others, 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 should try to coordinate meetings between all case managers and the family to minimize confusion and prevent duplication. Lindeke, Leonard, Presler, and others (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; Dittbrenner, 1999).

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 coordinator 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 primary, secondary, and tertiary health care services; speech, language, hearing, and vision resources; respite care services; financial assistance programs; parent groups; advocacy groups; local, state, and federal public officials; transportation services; and private-sector individuals with an interest in children with disabilities (Thompson, 2000). With a greater focus on outcomes of care in home health care, the nurse case manager is challenged to be resourceful and skilled in communication at a number of levels (Rice, 2001).

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, 2001.) Care paths may also be used to help nurses and other health care workers learn home care and should be shared with the family members involved in patient care to provide direction and help the family see the eventual goals of care (Rice, 2001).

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; they should be encouraged and supported 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.

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. 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 (Fig. 20-2). When practicing in the home, the nurse must be comfortable making independent nursing judgments and solving problems 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 (Box 20-7).

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 health 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. Stronger emphasis should be placed on issues specific to home care.

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 health 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, nurses often must rely on delegation skills to ensure the patient and family receive the necessary care. Delegation often involves assigning nursing tasks to other health care professionals (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 both (community) public health and home health nurses (American Nurses Association, 1999b, 1999c). 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 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. In addition, professional organizations have published standards of care that apply to pediatric home health nursing practice and are found in Box 20-8.

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, 2003). 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 (formerly the Health Care Financing Administration), 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).

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 illness (see Family Focus box). The nurse must assess and respect the family’s background and lifestyle choices. Particular attention is given to communication. The meaning of the words used and the way in which they are said may affect various cultural groups in different ways. Volume of speech and language style must be taken into consideration as part of a family cultural assessment. The home health care nurse must 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 will make in the child’s care. The family’s religion or spirituality is another factor that 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.

A variety of cultural assessment tools are available (Giger and Davidhizar, 2002; Spector, 2000). 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, culture-specific teaching materials should be used. In the United States increased emphasis has been placed 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).

Respect for family diversity and an awareness of family developmental stages and the stages of a family’s adjustment to a child’s illness will 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 (Hostler, 1999). 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.

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 Association^* has developed core competencies for professionals collaborating with families.

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 (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 families the reason for questions, particularly those they may perceive as intrusive, and should tell families who will have access to the information (see Critical Thinking Exercise). 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 related to obtaining 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 health 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, and others, 2002).

A plan can be made with the parents to gather relevant information when necessary (Hanson and Randall, 1999; Newton, 2000). Information should be shared with families in a way that has meaning in their cultural context (Davidhizar, Havnes, and Bechtel, 1999). Many parents report a preference for interactions with professionals who communicate empathy and concern (Harrigan, Ratliffe, Patrinos, and others, 2002). Families vary in the amount and delivery of information they can tolerate regarding their child’s status.

On occasion, disagreements may arise between parents and nurses over 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 Focus 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 disagreements cannot be resolved, a home care supervisor or case manager (care coordinator) should be contacted 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).

THE NURSING PROCESS

In the home the family is a partner in each step of the nursing process. Assessment should address family strengths and resources (Box 20-9).^* The principles of communication discussed previously guide data collection.

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. Both short- and long-term goals should be outlined and agreed on by the child, family, and professionals involved. 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 transdisciplinary mode of treatment can also be useful when a child has multiple and complex care requirements (Rothkopf and Rothkopf, 1997). 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.

Goals of care and achievement of established outcomes are supported by intervention strategies that reflect normalization (see Chapter 18) 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.

Families can participate in evaluating a home care plan 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, families should be acknowledged for their successes and accomplishments. Finally, families should be given 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 the evaluations to improve quality of care (see Family Focus box).

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 but not intrusive (McKlindon and Barsteiner, 1999) (see Critical Thinking Exercise).

Technologic trends that influence the nursing process in home care include the use of laptop computers (notebooks) to document the home visit; personal data assistants, or 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. The American Nurses Association (1999a) has established a list of competencies for nurses involved in telehealth technology. Telephone triage has become standard in many health care institutions. 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, 2001). In addition, concerns regarding the nurse-patient relationship (high tech–low touch) and the nurse’s role are raised with the use of any technology.

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 (see Evidence-Based Practice box, p. 643). 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 requires optimizing opportunities for developmentally appropriate experiences within the constraints posed by 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 20-10). 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 to parents 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.

The impact of chronic illness on development is discussed in Chapter 18. Behaviors that may be observed in children receiving home care that need to be addressed by the nurse include:

Infants—crying, withdrawal, detachment, inability to achieve developmental milestones

Toddlers—inactivity; sadness; screaming; regressive behavior; delays in motor, speech, social skills

Preschoolers—temper tantrums, refusal to comply with routines, refusal to eat or participate in self-care

School-age children—expression of loneliness, boredom, isolation, depression, and worry about school absences; altered physical growth

Adolescents—dependency, uncooperativeness, withdrawal, fear of loss of peer status or acceptance at school, altered image

Promoting coping and capability can buffer 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 attainment of 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 is focused at the child’s own level of conceptual understanding and may be augmented by 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 individual 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 via the Internet by entering the term 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 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 should be addressed in the home care plan.

The telephone and electric companies (if the use of medical equipment requires electricity) must be notified that the family needs to be placed 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 local authorities be given a map marked with key landmarks and intersections for rapid access to the home.

Before hospital discharge, emergency protocols are developed and reviewed with the parents and professional caregivers. Cardiopulmonary resuscitation guidelines, if appropriate, should be posted near the child’s bedside or in another accessible location. A list of emergency telephone numbers can be placed near each home phone and should include those 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 (OHDNR) orders (may vary by state), as indicated. If the patient and family desire enforcement of an advance directive, they must follow specific guidelines, which could prevent undesired lifesaving measures for children with terminal illnesses.

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 lack of parent training and parents’ inability to care for a child with complex medical needs (Schanwald, 2005). Professional staff caring for the child should have the appropriate background and training for the child’s particular care needs. Because of the child’s body size, special skill and caution are required in the performance of procedures (e.g., gastrostomy feedings, suctioning) and in monitoring the use of equipment (e.g., ventilator settings, intravenous flow rates, and total fluid volumes) (see Chapters 22, 23, 25).

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. Arrangements for the disposal of sharp items or contaminated materials can be made with the home health agency. Special attention is given 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 that may be used to prevent accidentally altering settings. Electrical cords are kept short and out of reach, and safety covers are used on any open outlets. Equipment is unplugged when not in use, and any wires (e.g., lead wires for an apnea monitor) are stored out of reach. (See Chapter 11 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; an inexpensive intercom system or baby monitor can be used. Steps must be taken 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 the American Academy of Pediatrics (1999) reference for guidelines for wheelchairs in cars, supine car seats, and equipment transportation.

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. 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. Other issues that are likely to arise as a result of the child’s illness and the constant attention required include labeling the child as being vulnerable, or vulnerable child syndrome, wherein parents may spend too much time preoccupied with the child’s welfare while ignoring other family members’ needs (Bennett, 2002). As the child with special health care needs develops and grows, parents should impose the same disciplinary rules on the child receiving home care as on siblings to avoid further conflict within the family.

Identifying meaningful sources of support can make a difference in coping abilities. Montagnino and Mauricio (2004) surveyed a group of mothers caring for children in the home who had 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 they 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 each family member’s needs differ. The care plan should acknowledge the needs of each family member (mother, father, siblings, grandparents). Peer support for school-age children and adolescents with complex care needs may be beneficial. These connections can be expanded to 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 standoffish 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.

American Academy of Pediatrics. Care coordination in the Medical Home: integrating health and related systems of care for children with special health care needs. Pediatrics. 2005;116(5):1238–1244.

American Academy of Pediatrics. Transporting children with special health care needs. Pediatrics. 1999;104(4):988–992.

American Nurses Association. Competencies for telehealth technologies in nursing. Washington, DC: The Association, 1999.

American Nurses Association. Standards of home health nursing practice. Washington, DC: The Association, 1999.

American Nurses Association. Standards of public health nursing practice. Washington, DC: The Association, 1999.

American Nurses Association. Nursing case management. Washington, DC: The Association, 1998.

Bakewell-Sachs, S, Carlino, H, Ash, L, et al. Home care considerations for chronic and vulnerable populations. Nurse Pract Forum. 2000;11(1):65–72.

Baum, LS. Internet parent support groups for primary caregivers of a child with special health care needs. Pediatr Nurs. 2004;30(5):381–388. [401,].

Bennett, AD. Home apnea monitoring for infants: a discussion of primary care issues. Adv Nurs Pract. 2002;10(3):48–53.

Carlin, MC. Hospice nursing: more than a job. Caring. 1999;18(1):8–9.

Cooper, C, Wheeler, DM, Woolfenden, SR, et al. Specialist home-based nursing services for children with acute and chronic illnesses. Cochrane Database Sys Rev. 2006;18(4):CD004383.

Daveluy, W, Guimber, D, Uhlen, S, et al. Dramatic changes in home-based enteral nutrition practices in children during an 11-year period. J Pediatr Gastroeneterol Nutr. 2006;43(2):240–244.

Davidhizar, R, Havnes, R, Bechtel, G. Assessing culturally diverse pediatric clients. Pediatr Nurs. 1999;25(4):371–376.

Dittbrenner, H. Pediatric home care as a viable new service. Caring. 1999;18(2):12–15.

Feudtner, C, Villareale, NL, Morray, B, et al. Technology-dependence among patients discharged from a children’s hospital: a retrospective cohort study. BMC Pediatrics. 2005;5(8):1–8.

Giger, JN, Davidhizar, R. The Giger and Davidhizar Transcultural Assessment Model. J Transcult Nurs. 2002;13(3):185–188.

Hanson, JL, Randall, VF. Evaluating and improving the practice of family-centered care. Pediatr Nurs. 1999;25(4):445–449.

Harrigan, RC, Ratliffe, C, Patrinos, ME, et al. Medically fragile children: an integrative review of the literature and recommendations for future research. Issues Compr Pediatr Nurs. 2002;25(1):1–20.

Hostler, SL. Pediatric family-centered rehabilitation. J Head Trauma Rehabil. 1999;14(4):384–393.

Johnson, BH. Family-centered care: facing the new millennium: interview by Elizabeth Ahmann. Pediatr Nurs. 2000;26(1):87–90.

Johnson, CP, Kastner, TA, American Academy of Pediatrics Committee on Children with Disabilities. Helping families raise children with special health care needs at home. Pediatrics. 2005;115(2):507–511.

Johnson, KB, Ravert, RD, Everton, A. Hopkins Teen Central: assessment of an internet-based support system for children with cystic fibrosis. Pediatrics. 2001;107(2):e24.

Kellett, UM, Mannion, J. Meaning in caring: reconceptualizing the nurse–family carer relationship in community practice. J Adv Nurs. 1999;29(3):697–703.

Knafl, KA, Deatrick, JA. The challenges of normalization for families of children with chronic conditions. Pediatr Nurs. 2002;28(1):49–53. [56,].

Lewis, JA, Sommers, CO. Personal data assistants: using new technology to enhance nursing practice. MCN. 2003;28(2):66–71.

Lindeke, LL, Leonard, BJ, Presler, B, et al. Family-centered care coordination for children with special needs across multiple settings. J Pediatr Health Care. 2002;16(6):290–297.

Magrabi, F, Lovell, NH, Henry, RL, et al. Designing home telecare: a case study in monitoring cystic fibrosis. Telemed J E Health. 2005;11(6):707–719.

McEvoy, M. Culture and spirituality as an integrated concept in pediatric care. MCN. 2003;28(1):39–43.

McKlindon, D, Barsteiner, JH. Therapeutic relationships. MCN. 1999;24(5):237–243.

Montagnino, BA, Mauricio, RV. The child with a tracheostomy and gastrostomy: parental stress and coping in the home—a pilot study. Pediatr Nurs. 2004;30(5):373–380. [401,].

National Alliance for Caregiving. Family caregiving in the U.S.: findings from a national survey. http://www.caregiving.org, 2005. [The Alliance, retrieved March 13, 2006, from].

National Center for Cultural Competence. Developing cultural competence in health care settings. Pediatr Nurs. 2002;28(2):133–137.

Navaie-Waliser, M, Misener, M, Mersman, C, et al. Evaluating the needs of children with asthma in home care: the vital role of nurses as caregivers and educators. Pub Health Nurs. 2004;21(4):306–315.

Nazer, D, Abdulhamid, I, Thomas, R, et al. Home versus hospital intravenous antibiotic therapy for acute pulmonary exacerbations in children with cystic fibrosis. Pediatr Pulmonol. 2006;41(8):744–749.

Newton, MS. Family-centered care: current realities in parent participation. Pediatr Nurs. 2000;26(2):164–168.

Page, DR. Pediatric home care: nursing the shortage. Caring. 2001;20(6):46–47.

Parra, MM. Nursing and respite care services for ventilator-assisted children. Caring. 2003;22(5):6–9.

Petit de Mange, EA. Pediatric considerations in homecare. Crit Care Nurs Clin North Am. 1998;10(3):339–346.

Rice, R. Case management and leadership strategies for home care nurses. In Rice R, ed.: Home care nursing practice: concepts and application, ed 3, St Louis: Mosby, 2001.

Rothkopf, MM, Rothkopf, GS. The home care team. In Rothkopf MM, ed.: Standards and practice of homecare therapeutics, ed 2, Baltimore: Williams & Wilkins, 1997.

Roush, CV, Cox, JE. The meaning of home: how it shapes the practice of home and hospice care. Home Healthcare Nurs. 2000;18(6):388–394.

Schanwald, PR. Gaps in pediatric care. Caring. 2005;25(9):20–25.

Spector, RE. Cultural diversity in health and illness, ed 5. Upper Saddle River, NJ: Prentice-Hall Health, 2000.

Stevens, B, McKeever, P, Law, MP, et al. Children receiving chemotherapy at home: perceptions of children and parents. J Pediatr Oncol Nurs. 2006;23(5):276–285.

Sullivan, T. Caregiver Strain Index. Home Healthcare Nurse. 2003;21(3):197–198.

Sullivan-Bolyai, S, Knafl, K, Sadler, L, et al. Great expectations: a position description for parents as caregivers, part II. Pediatr Nurs. 2004;30(1):52–56.

Sullivan-Bolyai, S, Sadler, L, Knafl, K, et al. Great expectations: a position description for parents as caregivers, part I. Pediatr Nurs. 2003;29(6):457–460.

Thompson, J. Pediatric assessment in the home. Home Health Nurs. 2000;18(10):639–646.

Timm, S. Effectively delegating nursing activities in home care. Home Healthcare Nurse. 2003;21(4):260–265.

Wilson, A. Understanding benchmarks. Home Healthcare Nurse. 2003;21(2):102–107.

Wilson, H. HIPAA: the big picture for home care and hospice. Home Health Care Manage Pract. 2004;16(2):127–137.

Yoder-Wise, P. Leading and managing in nursing, ed 3. St Louis: Mosby, 2003.