William Rathbone, a wealthy British businessman and philanthropist, founded the first district nursing association. The district nursing services combined therapeutic nursing care and education for healthful living practices. Working with Florence Nightingale, he advocated for district nursing throughout England in the mid 1880s (Stanhope & Lancaster, 2010) and founded a visiting nurses training school to ensure that nurses had the necessary knowledge and skills to work successfully in a community setting (Hitchcock, Schubert, & Thomas, 2003).

The visiting nurse model established in England was adapted by the United States as a means of addressing some of the serious public health problems of the late 19th century. Large American cities faced many challenges associated with increasing numbers of immigrants entering the country. Poverty-stricken communities with congested living conditions quickly gave rise to epidemics of infectious diseases such as
tuberculosis, smallpox, scarlet fever, typhoid, and typhus (Schoen & Koenig, 1997).

The first visiting nurse associations (VNAs) to provide care in the needy person’s home were established in the United States in Buffalo (1885), Philadelphia (1886), and Boston (1886). Charitable activities, supported by wealthy people, funded settlement houses and early VNAs. One of the early settlement houses in the United States began through the efforts of Lillian Wald and Mary Brewster (Stanhope & Lancaster, 2010).

Funded by the Metropolitan Life Insurance Company (Murkofsky & Alston, 2009), Lillian Wald and Mary Brewster revolutionized the concept of public health nursing (Hitchcock et al., 2003). Lillian Wald is credited with developing the title public health nurse, and with that title the focus of nursing care was broadened to encompass not just the health of individuals but also the health, social, and economic needs of the community as a whole. In 1893 Wald and Brewster co-founded the first organized public health nursing agency, New York City’s Henry Street Settlement. The settlement house provided a unique combination of social work, nursing, and social activism (Schoen & Koenig, 1997). The focus was public education to improve maternal and child health, communicable disease control, nutrition, and mental health. By 1911 Metropolitan Life Insurance Company had established the first national system of insurance for home care (Murkofsky & Alston, 2009).

The roles of the visiting nurse and public health nurse became more distinct by the late 1920s. Visiting nurses, employed by the private sector and financed by charity and public contributions, clearly were the “hands-on” providers of bedside nursing care in the home setting. Public health nurses, employed primarily by government health departments, focused their attention on promoting health and preventing disease in the broader community. Although their areas of concentration differed, both groups of nurses functioned independently in the delivery of nursing care outside of an institutional setting and shared the common goal of promoting, maintaining, and restoring health in the community (Hitchcock et al., 2003; see Table 20-1).

Successes achieved by the collective efforts of visiting nurses, public health nurses, and public health services created a shift in the focus of health care in the first half of the 20th century. Successes in teaching hygiene and decreases in immigration reduced the threat of communicable disease. Success in the community combined with advances in technology and hospital care led to changes in the populations served by home health nurses. During the 1930s and 1940s, fewer clients received care from visiting nurses (Reichley, 1999). However, hospitals quickly realized that although they were the providers of acute care, they were also becoming the providers of care for individuals with longterm chronic disorders. As a result, hospitals began searching for ways to control the increasing costs incurred by chronic illness care.

Establishment of New York City’s Montefiore Hospital Home Care Program in 1947 provided one alternative to care of clients needing healthcare interventions outside of an acute care setting. The Montefiore Program, a “Hospital Without Walls,” created a model of hospital-linked, home-delivered care utilizing the professional services of physicians, nurses, and social workers (Gundersen, 1999). This hospital-based homecare model demonstrated significant cost savings over in-hospital care and served as the catalyst for the resurgence of home health care as we know it today (Reichley, 1999). The focus for home care from Montefiore was not only the clients’ illness, with its subsequent chronic state, but also their
holistic needs. Social workers addressed the clients’ social needs and overall well-being and were interested in clients’ families, including their role in providing for the clients’ health care (Lundy & Janes, 2001).

For more than half a century, philanthropists, public charities, and contributions raised by the VNAs funded homecare services. In 1966 the federal government began providing for homecare services as a benefit of the new legislation known as Medicare. Medicare allowed for the expansion of homecare services to many people, particularly the elderly who did not have access to such care. In 1973 the Medicare homecare benefit was expanded to include disabled Americans regardless of age. However, homecare advocates became increasingly concerned that the narrowness of homecare legislation limited services as a means of avoiding the excessive costs of providing the full range of services that many clients needed (Reichley, 1999).

Between 1980 and 1996 the home healthcare industry experienced a 400% increase in Medicare-sponsored home care. During that time
period, the number of agencies certified to bill Medicare rose by 200% (Montauk, 1998). This was a direct result of many reimbursement changes affecting hospitals. In an effort to control the cost of care in acute care hospitals, Congress passed the Social Security Amendments of 1983 to initiate the prospective payment system (PPS) for inpatient services (Stanhope & Lancaster, 2010). Therefore, federal government shifted reimbursement to a PPS based on diagnosis-related groups (DRGs). With reimbursement for hospital care now predetermined by client diagnosis, hospitals responded to the significant revenue reductions by decreasing the average length of stay for clients. The direct consequence was shorter hospital stays and increased referrals to home care (Stanhope & Lancaster, 2010).

However, in 1997 Congress targeted home health care as a place to reduce healthcare expenditures. The passage of the Balanced Budget Act of 1997 (BBA) imposed stricter limits on Medicare reimbursement for homecare services and required the Medicare administration to develop a PPS (Murkofsky & Alston, 2009). The BBA narrowed the definition of those individuals eligible to receive homecare services to those individuals who were deemed “homebound.” Under these guidelines, Medicare recipients were no longer eligible for home care if they were able to leave home for any reason other than medical services (Maurer & Smith, 2005). The number of persons eligible for Medicare homecare funding declined by 50% between 1997 and 2000 (Maurer & Smith, 2005). Today, the industry continues to provide holistic care in a fiscally restrained environment. Under the PPS implemented in 2000, agencies were paid a set amount for each 60-day episode of care regardless of the number of visits provided. These payments are case-mix adjusted so the agency received more money for clients requiring more care (Murkofsky & Alston, 2009).

The framework for self- and family management of chronic conditions is designed to provide a structure for understanding factors influencing the ability of individuals and their families to manage chronic illness (Grey, Knafl, & McCorkle, 2006; Tanner, 2004; see Figure 20-1). The components of the framework are: self-management; risk and protective factors including condition factors, individual factors, psychosocial characteristics, family factors, and the environment.

Self- and family management of chronic illness is defined as the decisions and activities that individuals make on a daily basis to manage
their chronic health problems (Improving Chronic Illness Care, 2007; Grey et al., 2006; Ryan & Sawin, 2009). For some individuals, particularly those who are older or have cognitive deficits, engaging in self-management will be an ongoing challenge (Tanner, 2004). The nurse is challenged to help the client manage at the level of his or her ability (Jacelon, Furman, Rea, Macdonald, & Donoghue, 2011). The concept of self-management extends the responsibility of individuals with chronic illness beyond compliance and adherence to managing an ongoing condition within the context of their daily lives. In home care it is imperative that the nurse consider both the client’s ability to self-manage and the family’s ability to support the individual’s self-management (Grey et al., 2006).

The ability of individuals and families to manage chronic illness depends on the severity of the condition, the treatment regimen, the course of the disease, individual and family characteristics, and the environment in which individuals will manage their disease (Grey et al., 2006). The severity of the illness from the perspective of the individual with the chronic illness may not be the same as the nurse’s perception. The meaning of the condition and the implications for management may be affected by the meaning of the illness to the individual and family. The etiology of the condition (e.g., a lifestyle disease such as emphysema as a result of smoking or a genetically determined disease) will affect the ability for self-management. The implications for the family in these situations may cause guilt or concern for the susceptibility of other family
members. The treatment regimen for a chronic illness may be complex, requiring significant lifestyle adjustment. Individual factors such as the person’s age, psychosocial situation, functional ability, self-perceived ability to manage the illness, education, and socioeconomic status all contribute to the individual’s ability for self-management. Careful assessment by the nurse is imperative in providing care. Once an assessment is complete, the homecare nurse is in a position to coach the individual or family in management of the illness.

In the model of self-management and family management, outcomes can include improved condition symptoms, and improved individual and family outcomes such as better disease management, improved quality of life, or improved self-efficacy (Grey et al., 2006). The main goal of the model is to help the individual improve his or her health, using the broadest definition of health possible. The homecare nurse will want to support the self-and family’s self-management, teach them the skills needed to improve health, and coach the individual and family on incorporating those activities into their daily lives.

In this model, relationship is the basis of nursing practice (Doane, 2002). Individuals are “viewed as contextual beings who exist in relation with other people and with social, cultural, political, and historical processes” (Doane & Varcoe, 2007, p. 198). Every day nurses engage in relationships with clients, other nurses, and healthcare professionals. This network of relationships forms a web of mutual dependencies (Doane & Varcoe, p. 193). Relationship-based care is a model of human relating that reflects this web of interactions within the context of humanistic values (Hartrick, 1997). In the past, models of nursing care have been based on behavioral models in which the nurse learns a set of communication skills and applies those skills when interacting with clients. This model is unique in that it is based on the recognition of the relational nature and complexity of human experience (Hartrick, 1997, p. 524). Rather than enhancing communication between nurse and client, applying communication techniques
may impede communication because the nurse may be focused on performing these techniques, and unable to be “in-caring-human-relation” (Hartrick, 1997, p. 525). According to this model, “health and healing are promoted through the development of an increasing openness to learning and growth, an increasing capacity to tolerate ambiguity and uncertainty, and an increasing experience of empowerment and choice” (Hartrick, 1997, p. 525). For clients with chronic illness, this model of human relation may provide a means for the client, family, and nurse to grow in relationships with each other as well as in the relationship with the chronic illness.

Relationship-based care is not founded on problem identification and resolution, but on responding to the client in a manner that acknowledges and supports the significance of the chronic illness as the client experiences it. Nursing action is based on five capacities: 1) initiative, authenticity, and responsiveness; 2) mutuality and synchrony; 3) honoring complexity and ambiguity; 4) intentionality in relating; and 5) re-imaging (Hartrick, 1997, p. 526).

Initiative, authenticity, and responsiveness address the nurse’s active concern for others (Hartrick, 1997, p. 526). Within this model, these concepts are intertwined. The nurse takes the initiative to engage in relationship with the client. She or he is authentic, responding to the client and the situation in a way that is consistent with his or her personality, and showing emotions as they arise. Finally the nurse is responsive to the feelings, needs, and goals of the client. The nurse is mindful of her presence with the client and is attentive to the client with conscious listening.

The concepts of mutuality and synchrony explain the nature of relationships. Mutuality refers to the commonalities experienced by people in relationships. A mutual relationship is a negotiated, collaborative process where client and nurse both participate, make choices, and act (Doane & Varcoe, 2007, p. 193). These commonalities include shared visions and goals, while acknowledging differences in perspectives. Synchrony describes the rhythms naturally occurring in the relationship, including synchrony between internal and external patterns, and periods of silence (Hartrick, 1997, p. 526).

The nurse honors complexity and ambiguity by acknowledging the complexity of human experience. The nurse, in relation with the client, seeks to uncover the numerous and possibly conflicting elements of the experience. Through this process of discovery, the nurse and client begin to mutually make connections between seemingly disparate actions, feelings, and events. Through this process, the client and nurse are able to appreciate the relevance of the experience and make choices regarding the management of the disease process (Hartrick, 1997, p. 526).

Intentionality involves the nurse exploring his or her values and then maintaining consistency between personal values and values in use during professional practice. Each nursing moment is shaped by the actions and intentions of the nurse, the actions and responses of others, and by the contexts within which those interactions occur (Doane & Varcoe, 2007, p. 202). The intent of relational practice is to help clients understand the meaning of their health and healing experiences, and to discover choice and power within the experiences (Hartrick, 1997, p. 527). Re-imaging is the process of questioning the usual ways of being in the world. Through this process, the nurse can help clients transform their health and healing experiences and enhance their relational capacity (Hartrick, 1997, p. 527).

The nurse who engages in relational nursing practice makes a conscious commitment to act using the values and goals of the nursing profession to attend to each client’s unique context and situation, helping that person grow in health. Difficulty and suffering can provide a vehicle for meaningful relationships, which is the basis for ethical decision making. In these situations, responsive nursing care creates the space for mutual experience, and for nurse and client to develop clarity and courage to act in health-promoting ways (Doane & Varcoe, 2007, p. 202).

In more recent work, Weydt (2010) identifies other characteristics necessary for effective relationship-based care. These include clinical proficiency, interdisciplinary communication and teamwork, and continuity of nurse/patient/family relationships. In home care where a primary nursing care model is common, building relationships with clients to improve their self-management of chronic disease can help clients maximize their quality of life.

Individuals with chronic disease require a new strategy for health management. The Chronic Care Model (CCM) (Figure 20-2) was developed through a grant from the Robert Wood Johnson Foundation to change the way health care was delivered to individuals with chronic illness (Improving Chronic Illness Care, 2007). The model is designed to support the person with the chronic illness to self-manage his or her health using appropriate community and healthcare system resources. The home health nurse is in an excellent position to assist the client in managing his or her own health and chronic illness within this model (see Chapter 19).

Traditionally, the healthcare system in the United States has been focused on providing acute care for acute illness in an episodic manner. Individuals with chronic illness require a proactive approach, combining self-management with effective use of community resources and the healthcare system (Improving Chronic Illness Care, 2007). Care is based on evidence-based protocols that are then tailored to the needs of the individual client. Common areas of difficulty for self-management include managing multiple medications, recognizing early warning signs of condition changes, coordinating and appearing for multiple physicians’ appointments, understanding the plan of treatment, and coordinating support services (Meckes, 2005).

According to the CCM, healthcare systems need to retool to provide planned visits focused on maintaining wellness. In this model, clients are recognized as having the central role in managing their health. It is the role of healthcare providers to support clients’ ability to self-manage their health (Improving Chronic Illness Care, 2007). The nurse can also affect the client’s understanding of the disease process and choices for management. By being in the client’s home, the homecare nurse has a unique perspective on the client’s culture, and the meaning of the illness in his or her life.

Recently the CCM has been adapted to reflect care delivered by nurses in post-acute care settings such as home care (Jacelon et al., 2011). In this version of the model, the nurse and client are at the center of the model. The nurse and client form a team where the nurse coaches and advises the client in effective self-management techniques. The home healthcare nurse may act as a case manager, helping the client navigate complicated interactions with several medical care professionals, and guiding the client to seek medical care for condition changes in a timely manner. In addition, the nurse can encourage clients to engage with community organizations to help support their self-management strategies; these community agencies might include food programs and diseasefocused organizations (e.g., the Alzheimer’s Association).