Pediatric Nurse Practitioners: Primary Care Providers and Case Managers for . Chronically III Children at Home n Naitalie Harris Martinez, MSN, RN, CPNP, Mary Louise Schreiber, MS, RN, CPNP, and Ellyn Wade Hartman, MSN, RN, CPNP A new role has been developed for pediatric nurse practitioners that is home based and provides primary care and case management for chronically ill children. In a pilot program at Children’s Hospital and Health Center in San Dii, pediitric nurse prac-titioners address the complex needs of chronically ill children who require comprehensive care, education, psychosocial support, and coordination of services. This article describes the population, program, and expanded role for PNPs, emphasizing case management, management of chronic illness, minor illnesses, and management of well child care. Clinical impressions of the benefits of the role to the child and family are presented. J PEDIATR HEALTH CARE. (1991). 5, 291-298.
t
xpanding the role of the nurse practitioner to include home care creates a viable method for providing primary care and case management for children with chronic illnesses. Children’s Hospital and Health Center in San Diego implemented a pilot program designed to use pediatric nurse practitioners (PNPs) in this expanded role. The pilot program was completed in June 1990, and the first empirical analyses produced results with great promise. At this point, we are able to describe our experience as PNI’s in home care and our clinical irnpressions of the effects of this kind of nursing practice. This article was written during the active pilot phase and describes the population we serve, the program, and the expanded role of PNPs with attention to four dimensions of practice: case management, management of chronic illness, minor illnesses, and management of well child care. Mary Louise Schreiber Diego, California.
is $3PNP at Children’s
Hospital
and Health Center,
Natalie Harris Martinez and Ellyn Wade Hartman are currently Rees-Stealy Medical Croup, San Diego, California.
San
PNPs at Sharp
Send reprint requests to: Mary Louise Schreiber, MS, RN, CPNP, Children’s Hospital and Health Center, REACH Program/Discharge Planning, 8001 Frost, San Diego, CA 92123. The views expressed in this article are solely those of the authors and official endorsement by the Robert Wo+xi Johnson Foundation is not intended and should not be inferred. 2511123417
JOURNAL
OF PEDIATRIC
HEALTH
CARE
From the onset, the REACH program was designed to be “portable,” that is, so that it could be disseminated and replicated in other hospitals. The first empirical analyses focused on the questions that the stafi? of other hospitals would ask (such as, what is REACH, what is the impact of the intervention, is the program feasible, what are the impacts on system dollars). Initial analyses demonstrated that the REACH program was practical and successfi~I; outcomes improved for the children, their families, and the hospital. System health care dollars were saved (Meister, 1991; Meister et al., 1991). m TARGET
POPULATION
Chronic illness is a significant problem. It is estimated that 1 million children in the United States are burdened by severe chronic illness (Yoos, 1987). Chronic illness is defined by Perrin (1985) as “a condition that interferes with daily functioning for more than three months in a year, causes hospitalization of more than one month a year or (at time of diagnosis) is likely to do either of these” (pg. 2), In many pediatric tertiary care centers, chronically ill children account for approximately 40% of all hospital days (Mitchell, 1986). Frequent hospitalizations and inappropriate use of resources cause increased health care costs and family stress. School absenteeism is also a major problem for these children.
291
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CASE STUDY David is a severely developmentally delayed, blind, and deaf z-year-old boy who has been hospitalized 18 times since birth for seizures and respiratory illnesses. hlany factors contributed to his frequent hospitalizations. His illiterate non-English speaking family had insufficient knowledge of his disease process and were noncompliant with the treatment regimen. Transportation problems prevented them from follow-up care, and they had limited financial resources. David’s family had a history of neglect, his father ‘was incarcerated, and they had no primary care provider. He was referred by his neurologist to the REACH Program at Children’s Hospital and Health Center in San Diego. Through this program, the PNP provided David with primary care as well as health teaching and extensive coordination of health services for him and his family. The PNP monitored’ his seizure medications with the neurologist. During home visits, compliance with the treatment regimen was assessed through observation of the family’s ability to administer the child’s medication, ensuring the family’s access to the prescribed medication, and evaluating the family’s knowledge of the therapeutic plan. David’s seizures decreased in number and severity as his mother became more capable and effective in following the treatment Iregimen. Previously, acute illnesses such as otitis media and other respiratory infections exacerbated his seizures and resulted in frequent visits to the emergency room. Through intervention by the PNP, acute illnesses were managed promptly, either at home or in the clinic, which decreased both the number of seizures and emergency room visits. David had no source of well child care when he was referred to the REACH program. The PNP provided health screening and administered all immunizations, including the influenza vaccine. Vitamins with fluoride and dietary counseling were also provided. An environmental assessment determined the need for emergency food, housing, and funding sources. The PNP worked with community agencies to obtain these needed resources. Respite care and transportation were other services provided for the family. Following a developmental assessment, the PNP assisted the child in obtaining access to an infant stimulation program, occupational and physical therapies, and specialty referrals. After 18 months of enrollment in the REACH program, David was referred to a community pediatrician and discharged from the REACH program. The family has been compliant with follow-up and maintains access to community resources. David has not been hospitalized for 6 months.
Children’s Hospital and Health Center in San Diego (CHHC) targeted a population within this group: the subgroup who were frequently hospitalized, who had problems with noncompliance, and/or who lacked a primary care provider. Consistent follow-up and compliance with the medical regimen might have prevented some emergency room visits and hospitalizations that were experienced by these children as a result of the acute exacerbations of their chronic illnesses. Often, characteristics of the family would be the reason for intervention. For example, many of the families did not use community resources because they could not speak English or because they were “low functioning,” meaning they had difficulty solving problems and/or processing information, had not finished high school, and/or were illiterate. Many of the families were “dysfunctional,” that is, one or more of the family members exhibited ineffective coping patterns, abused drugs or alcohol, were incarcerated, or were perpetrators of child abuse or neglect. Other factors that burdened these f&nilies included lack of money for basic needs and medical expenses and problems with transportation. In addition, these chronically ill children lacked adequate and consistent well child care. n
MEETING THE NEEDS OF THE POPULATION
Children’s Hospital and Health Care in San Diego was looking for a way to meet the needs of these children. The hospital was able to draw on the resources of “Healthy Children” as it was developing its new program. Directed by Philip J. Porter, MD, FAAI?, Associate Professor of Pediatrics at Harvard Medical School, the Healthy Children program assists communities in making health care services accessible to needy children through imaginative and efficient use of existing community resources. Healthy Children does not make grants, instead it provides information about strategies that have worked in other communities (Porter & Butler, 1987). Healthy Children provided CHHC with strategies from a number of communities, including Gainesville, Florida. The Florida project REACH (Rural Efforts to Assist Children at Home) was “a service demonstration project that provided health care and case management to medically dependent children , . .” (Pierce & Freedman, 1983, pg. 86). Nurses provided home care and case management in collaboration with physicians based at the University of Florida Health Center. Children’s Hospital and Health Center in San Diego decided that the rural Florida REACH model could be successfully applied to its urban setting. The Children’s Hospital REACH model was pilottested by Children’s Hospital and Health Center in San Diego and Children’s Memorial Hospital in Chicago.
Journal of Pediatric Health Care
The pilot programs, and the research to assess them, were funded by the hospitals and by the Robert Wood Johnson Foundation. The programs ran for 2 years (June 1988 throu,gh June 1990). As of June 1990 the pilot programs were concluded, and each hospital has adapted its own version of the program.
Each hospital’s
REACH program was designed to match the needs and resources of the institution.
Each hospital’s REACH program was designed to match the needs and resources of the institution. In San Diego, the target population lacked primary care providers, and thus, the REACH program was designed to use Master’s-prepared certified pediatric nurse practitioners. THE ROLE OF THE PEDIATRIC NURSE PRACTITIONER
n
The PNP role was designed to increase the quality, availability, and accessibility of child care in the United States (Hymovich, 1985). According to the statement on Scope of Practice, the PNP promotes the psychosocial, physical, and developmental well-being of children by functioning as a practitioner, a collaborative member of the health team and an advocate of child health in the community (Scope of Practice, 1974). Traditionally, nurse practitioners have been in primary care settings but a.renow beginning to emerge in tertiary care and in home care settings. Mezey (198611 advocates strengthening the role of the nurse practitioner as a primary care provider in home care, with physicians acting in the consultative role. ‘This serves to clarify the responsibility for care, allowing clients and their families to negotiate directly with the health professional most responsible for their care” (Mezey, 1986, pg. 48). Because a primary focus of nursing is health maintenance, nurse practitioners can assume a leadership role in coordination of services to ensure continuity, comprehensiveness, and individualization of care. Nurse practitioners have the knowledge and abilities to assume key positions in coordinating such services, especially in view of the trend toward emphasizing the total needs of the child and family (Hymovich, 1985). In recent years this system of assessment, planning, coordination of services, and monitoring a client’s needs and services has become known as case managing. The Task Force on Case Management in Nursing (1988) advocates the nurse as a case manager for clients who ;are chronically ill; who have muhifaceted, costly care;, or who are severely compromised by an acute episode of illness.
Primary Care Providers
n
LAUNCHING
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THE REACH PROGRAM
Because Children’s Hospital and Health Center in San Diego has targeted a population of chronically ill children with high-risk families who are unable to use the traditional system, home care by PNPs presents a viable method for providing comprehensive care. As case managers, these PNPs aim to provide comprehensive care, decrease fragmented care, promote the child’s and family’s well being, and contain costs. Referrals are received from many sources including subspecialty physicians (i.e., neurologists, immunologists), nurses, and social workers. The 69 children enrolled in the program are age 16 years and under. They have a variety of chronic illnesses such as seizure disorders, cerebral palsy, myelomeningocele, immunodeficiencies, diabetes, asthma, cardiac defects, cancer, tuberculosis, renal problems, and pulmonary disease. Several of these children require ventilator support. Seventy percent of the REACH patients are developmentally delayed. Thirty-two percent have multisystem involvement, with more than one chronic illness. The REACH patients are from various backgrounds: 51% are hispanic, 31% are white, 16% are black, and 2% are other. Twenty-nine percent do not speak English; 50% of the children enrolled have a history of abuse or neglect. All families carry the burden of the child’s chronic illness and multiple financial and social problems.
T
he process of enrollment begins with a telephone call to the family, a contact during an inpatient hospital stay, or a clinic visit.
The process of enrollment begins with a telephone call to the family, a contact during an inpatient hospital stay, or a clinic visit. The program is reviewed, and consent is obtained. Early in the course of care, the REACH PNP collects information to form a data base on the child and the family. Information in the data base includes the following: 1. Health history and physical examination 2. Developmental assessment 3. Daily care needs of the chronically ill child 4. School and educational needs 5. Family assessment 6. Environmental assessment 7. Assessment of community resources Tables 1,2, and 3 provide a description of the in-depth assessment that the nurse practitioner completes on each family. This assessment usually requires two home visits and is continually updated. From the client data base a comprehensive picture of the child is formed, enabling
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& Hartman
‘I’ABLE 1 Initial assessment: Patient data base
Mm Meet
s&pecialty
M providers
Acth&ies, therapy Medications Infusion therapy Home health nurse
History of chronic #m&es) l Diagn:noses, prognosis, medications Document frequency of visits Chart review Meet with family/client l Comprehensive history l Prenatal, birth apgars, perinatal l Family history l Childhood illnesses, immunizations l Surgeries, hospitalizations l Treatments, medications l Dietary history l Developmental milestones l Activities of daily living Comprehensive physical exam l Vision, hearing, dental Developmental assessment l Gross/fine motor, language skills l Social, emotional, intellectual evaluation l Neurological evaluation l Occupational/physical therapy evaluation l
the PNP to identify health needs, to anticipate problems, and to create a plan of care. An assessment of the family, home environment, and community resources currently being used is the first step in the PNP’s process of case management. l
~~~~~~ONAl School name, phone Teacher/nurse contact Past educational history Individual educational plan Psychometric tests Special class infant stimulation Transportation l Physically handicapped School environment l Experiences with chronic illness
During evening and weekend hours, the supervising physicians for the BEACH program are available for phone triage. Patients can be referred to the hospital’s after-hours clinic as necessary.
A typical
home visit lasts 1 hour and 15 minutes and includes assessment/diagnosis, planning, implementation, and evaluation.
PROCESS OF CARE
One full-time PNP and two part-time PNPs manage a caseload of approximately 45 chronically ill children. Each PNP makes two to five home visits daily (Monday through Friday) as well as seeing children in the outpatient clinic and in the hospital. Several hours a day are spent in case management. Daily patient phone calls are handled by the triage method and may necessitate a home visit if the child is acutely ill. Each child’s home can be reached in a reasonable amount of travel time (45 to 60 minutes). A typical home visit lasts 1 hour and 15 minutes and includes assessment /diagnosis, planning, implementation, and evaluation. Patient and family teaching about the child’s illness, treatment, equipment, and growth and development is provided. Because many of the families are without a phone, PNPs use car phones to maintain contact with physicians and community resources during home visits. School visits are made to assessthe child in the school setting and to ensure that the child’s treatment plan is understood. All patient contact is documented for the hospital medical record, and data are collected for the research project.
Weekly meetings with the supervising physicians provide an update on each patient’s status. Although each PNP has his or her own caseload, patient coverage is shared on scheduled days off. n
DIMENSIONS
OF PRACTICE
Providing comprehensive care for children with chronic illnesses includes attention to four dimensions of practice: (a) case management, (b) management of chronic illness, (c) management of minor pediatric illnesses, and (d) management of well child care. The following subsections address how PNPs in the BEACH program are able to meet the needs of these chronically ill children by providing primary care and case management in the home. Case Management
The goals of the PNP as case manager include providing comprehensive health care, assisting the child in meeting
Journal of Pediatric Health
Primary Care Providers
Care
W TABLE
and Case Managers
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2 Initial assessment: Family data base
his or her optimal level of functioning, and decreasing fragmented health care and health care costs (Task Force on Case Management, 1988). The PNP’s initial assessment of a child enrolled in the REACH program provides the data base needed to begin the delivery of comprehensive care. The problems, strengths, and needs of both the child and the family are determined, and a plan of care is formulated with the help of the family and other health care providers. The PNP collaborates with physicians, specialty nurses, social workers, therapists, and community agencies that are participating in the care of each child. Because the PNP is involved in all aspects of the child’s care, communication between health care providers and continuity of care are enhanced.
A
s case manager, the PNP assesses community services currently used by the family and initiates involvement of other resources as needed.
As case manager, the PNP assessescommunity services currently used by the family and initiates the involvement of other resources as needed. The PNP assists the family with securing basic needs such as food, housing, and medications. It has been our observation that once these basic needs are met, the family is more attentive to their child’s physical and medical needs. The PNP also initiates referrals to resources including respite care, therapies, and educational programs. With these resources in place:, the PNP continues to provide on-
going care and encourages follow-up. Once the family fully participates in meeting the child’s physical and psychosocial needs, the child is more likely to function at his or her optimal level. Management
of Chronic Illness
Before the first meeting with the child, the PNP reviews the child’s illness and the current treatment plan with the referring physician and specialty nurses. The PNP’s role in monitoring the chronic illness at home involves assessment of the following areas of the child’s daily life: the child’s condition, the family’s ability to provide daily care for their child, the use and maintenance of home equipment, and the adequacy of the home environment. The number of intermittent home visits, clinic visits, and phone calls varies according to the child’s needs, but the goal of the PNP is to contact each family at least monthly. Diagnostic studies, medications, and therapies are ordered as needed, per standardized procedures, in consultation with the physician. When a child develops an acute problem, consultation with the physician is made to devise an appropriate treatment plan. For example, if a child with asthma has respiratory distress, the PNP examines the child, aerosol treatments are given, the immunologist is consulted, laboratory work is ordered, and medications are adjusted as needed. If an emergency room visit or hospital admission is warranted, the PNP helps facilitate these through preparation of the family and communication with the health care team. After the acute phase, the PNP coordinates follow-up either in the clinic or through a home visit.
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& Hartman
of Minor Pediatric Illnesses
Minor pediatric illnesses such as otitis media and pharyngitis can be managed by the nurse practitioner in the home. REACH families contact the PNP when the child is acutely ill, and a home visit is made as warranted. Standardized procedures are used to manage these minor pediatric ‘illnesses in phone consultation with the physician. Compliance with the treatment regimen and evaluation of the child’s status are assessedwith a followup home visit.. Management
of Well Child Care
As primary care providers, the PNP’s role includes management of well child care. Using the guidelines of the American Academy of Pediatrics (1985) for health supervision, the PNP addresses the following areas: immunizations, nutrition, development, physical growth, dental care, and health screening. Because children enrolled in the REACH program are chronically ill and cared for in the home, modifications and innovative approaches are used in providing well child care. In addition, PNPs making home visits are in a unique position to do an environmental assessment and to observe family dynamics. A hypothetical case study for a typical child enrolled in the CHHC program who received home intervention from a PNP is found at the end of this article. w IMPACT OF THE PROGRAM
It is our clinical impression that both the chronically ill child and the child’s family have benefited from this program. Many children who frequently used the emer-
Volume 5, Number 6 November-December 1991
gency room for minor acute illnesses are now being managed effectively in the home. Because the parents promptly contact the PNP for intervention, their child is seen sooner during the acute illness phase, decreasing the likelihood of an emergency room visit or hospitalization. This has been a significant benefit for ventilatordependent children who are difficult to transport. Moreover, chronically ill children who have been hospitalized can go home earlier because PNPs are available for home visits. It is our impression that these interventions have decreased health care costs for these children. This impression will be tested in formal analysis using cost effective techniques. We have observed that the chronic illnesses of many children are better controlled as a result of their increased understanding and compliance with the treatment regimen and follow-up. This has been particularly evident for the children in the program who have diabetes (five patients) and asthma (11 patients). The laboratory values of several children with diabetes improved dramatically within the first 2 months that these children participated in the REACH program, and these values continue to improve. Hospitalizations and visits to the emergency room have been reduced significantly (from multiple hospitalizations to zero to one and from weekly emergency room visits to zero to two per child). Most emergency room visits occur on weekends when the PNPs are not available for home visits. According to school reports, children in the program who have diabetes and asthma have increased their school attendance remarkably. Five families with children who have severe devel-
Journal of Pediatric Health
Primary Care Providers
Care
opmental delays were frequent users of many hospital services (inpatient stays, clinic visits, emergency room visits, and use of after-hours clinic). These children had uncontrolled seizures (up to 20 per day), recurring infections, and common childhood illnesses. Each family has received primary care, education, social support, and case management through the BEACH program. The number of seizures has decreased to less than three per day through close monitoring of medications by the PNP in consultation with the physician. Infections, which exacerbate seizure disorders, receive prompt treatment at home, and use of the various hospital services, have decreased. The children enrolled in San Diego’s BEACH program did not have accessto primary care providers. The PNPs have provided immunizations, tuberculosis and influenza vaccinations, evaluations of speech/hearing/developmenral status, and fluoride and vitamin supplements . While enrolled in the BEACH Program, six of the 69 patients were removed from their homes because of abuse or ne,glect; five are doing well in foster homes, and one has returned home. Thirty-four of the patients have been active child protection cases; some of them still are active. The PNPs provide monitoring and interventions that, in some cases, have allowed children to remain in their homes. Families have received anticipatory guidance about diseases, supportive counseling, and referrals for essential resources such as food, shelter, and clothing. They have been encouraged to become independent and to take action for their children. Families without phones have been assisted with securing lifeline phones at a reduced cost. When following up with children who have been discharged, we have observed that the families continue to comply with the medical regimen, including giving medications to the child and attending followup appointments. The parents have been more effective advocates for their children. The children are receiving care from a community pediatrician and continue to be followed by their subspecialty physicians. An increased level of compliance is being maintained, and these children are being managed successfully by their parents at home.
Slocial support
provided by the PNPs has assisted many families in coping with the stressors of living with a chronically ill child.
It is our impression that during home visits, nurse practitioners can obtain more information than can be obtained in the clinic setting, including knowledge of family dynamics, the home environment, the family’s management of the child’s illness, and a clearer view of
and Case Managers
297
the impact of the illness on the family. When PNPs understand why families have not been compliant with the therapeutic regimen, they can more effectively intervene. Social support provided by the PNPs has assisted many families in coping with the stressors of living with a chronically ill child. In summary, we believe that PNPs can effectively provide primary care and case management for chronically ill children in the home. Using the four dimensions of practice: (a) case management, (b) management of chronic illness, (c) management of minor pediatric illnesses, and (d) management of well child care, PNPs have created an appropriate model to provide for the needs of these chronically ill children. Benefits of this method of care delivery have been numerous. We have observed an increase in compliance with the medical regimen as measured by following prescribed diet, taking medications, and attending follow-up appointments. In addition, there has been an increase in school attendance, prevention of hospital admissions and emergency room visits, and more appropriate use of community resources. We believe that the children have received less fragmented and more comprehensive care than they received prior to their enrollment in the BEACH program. It is our hope that this program will be duplicated in other institutions. n n
ACKNOWLEDGEMENTS
We would like to acknowledge the following people for their participation in the REACH program: Irvin A. Kaufman, MD, as Project Director; Herbert Kimmons, MD, as Program Director; Mary Louise Braney, MS, RN, Vice President for the Program; Jonathan Bates, MD, former Project Director; Susan Meister, PhD, RN, FAAN, as Principal Investigator; Shirley Girouard, PhD, RN, FAAN, Program Officer at the Robert Wood Johnson Foundation; A. Todd Davis, MD, Program Director in Chicago; Phil Porter, MD, Healthy Children Director; Mindy Cohn, RN, and Marilyn McFall, BS, RN, Chicago REACH nurses. We are grateful to the Robert Wood Johnson Foundation for the grant which made the REACH Project possible, along with Children’s Hospital and Health Center in San Diego and Children’s Memorial Hospital of Chicago for the funding for the REACH Program. REFERENCES American Academy of Pediatrics. (1985). Guidelinesfi health super&&z. Evanston, IL: Author. Hymovich, D. (1985). Nursing services. In N. Hobbs and J. Perrin (Eds.), Issues in the care of children with chronic illness (pp. 478493). San Francisco: Jossey-Bass. Meister, S.B. (1991). Children’s hospitals REACH out: Content of care and impact in two pilot programs. Final report to the Robert Wood Johnson Foundation. Meister, S.B., Feetham, S.L., Girouard, S., & Durand, B.A. (in press). Creating and extending successful innovations: Practice and policy implications. In: Differentiating nursing practice: Into the twentyfirst century. American Academy of Nursing. Mezey, M. (1986). The mture of primary care and nurse practitioner. In M. Mezey and D. McGivem (Eds.). Nurses, numepractitiunm: The evolution ofpimmy care (pp. 37-49). Boston: Little Brown.
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& Hartman
Mitchell, K. (1!>86). Taking children home where they belong. Pcdiasric Num’ng, 12, 256. Perrin, J. (1985). Introduction. In N. Hobbs and J. Perrin (Eds.). Ima in th care of children with chronic ills (pp. l-10). San Francisco: Jossey-Bass. Pierce, I’., & Freedman, S. (1983). The REACH project: An innovative health delivery model for medically dependent children. CWrcu’s Hcaltb Cart, 12, 86-89. Porter, P. J., & IButler, J. C. (1987). Healthy children: An assessment
Volume 5, Number 6 November-December 1991
of community based primary care health programs for children and their impact on access,cost and quality. Advmca in Pedhia, 34, 379-410. Scope of Practice Statcm~t for Pediatric Nurse Practitioners Issued. (1974, May). The Am&can Num, 5. Task Force on Case Management in Nursing. (1988). NW@ cuse rnun+mcnt. Kansas City, MO: American Nurses’ Association. Yoos, L. (1987) Chronic childhood illnesses: Developmental issues. Pediatric Nursing, 13, 25-28.
Bound Volumes Available to Subscribers Bound volumes of the JOURNAL OF PEDIATRIC HEALTH CARE are available to subscribers (only) for the 1990 issues from the Publisher, at a cost of $25.00 ($32.75 for Canadian and $3 1.00 for international) for Vol. 4 (January-December). Shipping charges are included. Each bound volume contains a subject and author index and all advertising is removed. Copies are shipped within 60 days afrer publication of the last issue of the volume. The binding is durable buckram with the JOURNAL name, volume number, and year stamped in gold on the spine. Pa-t must accmpany all mh. Contact Mosby-Year Book Inc., Subscription Services, 11830 Westline Industrial Drive, St. Louis, MO 631463318, USA; phone (800)325-4177, ext. 4351; (314)453-4351. Subsctiptious must be in force to qualify. Bound volumes are not available in place of a regular JOURNAC subscription.
t
xpanding the role of the nurse practitioner to include home care creates a viable method for providing primary care and case management for children with chronic illnesses. Children’s Hospital and Health Center in San Diego implemented a pilot program designed to use pediatric nurse practitioners (PNPs) in this expanded role. The pilot program was completed in June 1990, and the first empirical analyses produced results with great promise. At this point, we are able to describe our experience as PNI’s in home care and our clinical irnpressions of the effects of this kind of nursing practice. This article was written during the active pilot phase and describes the population we serve, the program, and the expanded role of PNPs with attention to four dimensions of practice: case management, management of chronic illness, minor illnesses, and management of well child care. Mary Louise Schreiber Diego, California.
is $3PNP at Children’s
Hospital
and Health Center,
Natalie Harris Martinez and Ellyn Wade Hartman are currently Rees-Stealy Medical Croup, San Diego, California.
San
PNPs at Sharp
Send reprint requests to: Mary Louise Schreiber, MS, RN, CPNP, Children’s Hospital and Health Center, REACH Program/Discharge Planning, 8001 Frost, San Diego, CA 92123. The views expressed in this article are solely those of the authors and official endorsement by the Robert Wo+xi Johnson Foundation is not intended and should not be inferred. 2511123417
JOURNAL
OF PEDIATRIC
HEALTH
CARE
From the onset, the REACH program was designed to be “portable,” that is, so that it could be disseminated and replicated in other hospitals. The first empirical analyses focused on the questions that the stafi? of other hospitals would ask (such as, what is REACH, what is the impact of the intervention, is the program feasible, what are the impacts on system dollars). Initial analyses demonstrated that the REACH program was practical and successfi~I; outcomes improved for the children, their families, and the hospital. System health care dollars were saved (Meister, 1991; Meister et al., 1991). m TARGET
POPULATION
Chronic illness is a significant problem. It is estimated that 1 million children in the United States are burdened by severe chronic illness (Yoos, 1987). Chronic illness is defined by Perrin (1985) as “a condition that interferes with daily functioning for more than three months in a year, causes hospitalization of more than one month a year or (at time of diagnosis) is likely to do either of these” (pg. 2), In many pediatric tertiary care centers, chronically ill children account for approximately 40% of all hospital days (Mitchell, 1986). Frequent hospitalizations and inappropriate use of resources cause increased health care costs and family stress. School absenteeism is also a major problem for these children.
291
292
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Schreiber,
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CASE STUDY David is a severely developmentally delayed, blind, and deaf z-year-old boy who has been hospitalized 18 times since birth for seizures and respiratory illnesses. hlany factors contributed to his frequent hospitalizations. His illiterate non-English speaking family had insufficient knowledge of his disease process and were noncompliant with the treatment regimen. Transportation problems prevented them from follow-up care, and they had limited financial resources. David’s family had a history of neglect, his father ‘was incarcerated, and they had no primary care provider. He was referred by his neurologist to the REACH Program at Children’s Hospital and Health Center in San Diego. Through this program, the PNP provided David with primary care as well as health teaching and extensive coordination of health services for him and his family. The PNP monitored’ his seizure medications with the neurologist. During home visits, compliance with the treatment regimen was assessed through observation of the family’s ability to administer the child’s medication, ensuring the family’s access to the prescribed medication, and evaluating the family’s knowledge of the therapeutic plan. David’s seizures decreased in number and severity as his mother became more capable and effective in following the treatment Iregimen. Previously, acute illnesses such as otitis media and other respiratory infections exacerbated his seizures and resulted in frequent visits to the emergency room. Through intervention by the PNP, acute illnesses were managed promptly, either at home or in the clinic, which decreased both the number of seizures and emergency room visits. David had no source of well child care when he was referred to the REACH program. The PNP provided health screening and administered all immunizations, including the influenza vaccine. Vitamins with fluoride and dietary counseling were also provided. An environmental assessment determined the need for emergency food, housing, and funding sources. The PNP worked with community agencies to obtain these needed resources. Respite care and transportation were other services provided for the family. Following a developmental assessment, the PNP assisted the child in obtaining access to an infant stimulation program, occupational and physical therapies, and specialty referrals. After 18 months of enrollment in the REACH program, David was referred to a community pediatrician and discharged from the REACH program. The family has been compliant with follow-up and maintains access to community resources. David has not been hospitalized for 6 months.
Children’s Hospital and Health Center in San Diego (CHHC) targeted a population within this group: the subgroup who were frequently hospitalized, who had problems with noncompliance, and/or who lacked a primary care provider. Consistent follow-up and compliance with the medical regimen might have prevented some emergency room visits and hospitalizations that were experienced by these children as a result of the acute exacerbations of their chronic illnesses. Often, characteristics of the family would be the reason for intervention. For example, many of the families did not use community resources because they could not speak English or because they were “low functioning,” meaning they had difficulty solving problems and/or processing information, had not finished high school, and/or were illiterate. Many of the families were “dysfunctional,” that is, one or more of the family members exhibited ineffective coping patterns, abused drugs or alcohol, were incarcerated, or were perpetrators of child abuse or neglect. Other factors that burdened these f&nilies included lack of money for basic needs and medical expenses and problems with transportation. In addition, these chronically ill children lacked adequate and consistent well child care. n
MEETING THE NEEDS OF THE POPULATION
Children’s Hospital and Health Care in San Diego was looking for a way to meet the needs of these children. The hospital was able to draw on the resources of “Healthy Children” as it was developing its new program. Directed by Philip J. Porter, MD, FAAI?, Associate Professor of Pediatrics at Harvard Medical School, the Healthy Children program assists communities in making health care services accessible to needy children through imaginative and efficient use of existing community resources. Healthy Children does not make grants, instead it provides information about strategies that have worked in other communities (Porter & Butler, 1987). Healthy Children provided CHHC with strategies from a number of communities, including Gainesville, Florida. The Florida project REACH (Rural Efforts to Assist Children at Home) was “a service demonstration project that provided health care and case management to medically dependent children , . .” (Pierce & Freedman, 1983, pg. 86). Nurses provided home care and case management in collaboration with physicians based at the University of Florida Health Center. Children’s Hospital and Health Center in San Diego decided that the rural Florida REACH model could be successfully applied to its urban setting. The Children’s Hospital REACH model was pilottested by Children’s Hospital and Health Center in San Diego and Children’s Memorial Hospital in Chicago.
Journal of Pediatric Health Care
The pilot programs, and the research to assess them, were funded by the hospitals and by the Robert Wood Johnson Foundation. The programs ran for 2 years (June 1988 throu,gh June 1990). As of June 1990 the pilot programs were concluded, and each hospital has adapted its own version of the program.
Each hospital’s
REACH program was designed to match the needs and resources of the institution.
Each hospital’s REACH program was designed to match the needs and resources of the institution. In San Diego, the target population lacked primary care providers, and thus, the REACH program was designed to use Master’s-prepared certified pediatric nurse practitioners. THE ROLE OF THE PEDIATRIC NURSE PRACTITIONER
n
The PNP role was designed to increase the quality, availability, and accessibility of child care in the United States (Hymovich, 1985). According to the statement on Scope of Practice, the PNP promotes the psychosocial, physical, and developmental well-being of children by functioning as a practitioner, a collaborative member of the health team and an advocate of child health in the community (Scope of Practice, 1974). Traditionally, nurse practitioners have been in primary care settings but a.renow beginning to emerge in tertiary care and in home care settings. Mezey (198611 advocates strengthening the role of the nurse practitioner as a primary care provider in home care, with physicians acting in the consultative role. ‘This serves to clarify the responsibility for care, allowing clients and their families to negotiate directly with the health professional most responsible for their care” (Mezey, 1986, pg. 48). Because a primary focus of nursing is health maintenance, nurse practitioners can assume a leadership role in coordination of services to ensure continuity, comprehensiveness, and individualization of care. Nurse practitioners have the knowledge and abilities to assume key positions in coordinating such services, especially in view of the trend toward emphasizing the total needs of the child and family (Hymovich, 1985). In recent years this system of assessment, planning, coordination of services, and monitoring a client’s needs and services has become known as case managing. The Task Force on Case Management in Nursing (1988) advocates the nurse as a case manager for clients who ;are chronically ill; who have muhifaceted, costly care;, or who are severely compromised by an acute episode of illness.
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THE REACH PROGRAM
Because Children’s Hospital and Health Center in San Diego has targeted a population of chronically ill children with high-risk families who are unable to use the traditional system, home care by PNPs presents a viable method for providing comprehensive care. As case managers, these PNPs aim to provide comprehensive care, decrease fragmented care, promote the child’s and family’s well being, and contain costs. Referrals are received from many sources including subspecialty physicians (i.e., neurologists, immunologists), nurses, and social workers. The 69 children enrolled in the program are age 16 years and under. They have a variety of chronic illnesses such as seizure disorders, cerebral palsy, myelomeningocele, immunodeficiencies, diabetes, asthma, cardiac defects, cancer, tuberculosis, renal problems, and pulmonary disease. Several of these children require ventilator support. Seventy percent of the REACH patients are developmentally delayed. Thirty-two percent have multisystem involvement, with more than one chronic illness. The REACH patients are from various backgrounds: 51% are hispanic, 31% are white, 16% are black, and 2% are other. Twenty-nine percent do not speak English; 50% of the children enrolled have a history of abuse or neglect. All families carry the burden of the child’s chronic illness and multiple financial and social problems.
T
he process of enrollment begins with a telephone call to the family, a contact during an inpatient hospital stay, or a clinic visit.
The process of enrollment begins with a telephone call to the family, a contact during an inpatient hospital stay, or a clinic visit. The program is reviewed, and consent is obtained. Early in the course of care, the REACH PNP collects information to form a data base on the child and the family. Information in the data base includes the following: 1. Health history and physical examination 2. Developmental assessment 3. Daily care needs of the chronically ill child 4. School and educational needs 5. Family assessment 6. Environmental assessment 7. Assessment of community resources Tables 1,2, and 3 provide a description of the in-depth assessment that the nurse practitioner completes on each family. This assessment usually requires two home visits and is continually updated. From the client data base a comprehensive picture of the child is formed, enabling
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‘I’ABLE 1 Initial assessment: Patient data base
Mm Meet
s&pecialty
M providers
Acth&ies, therapy Medications Infusion therapy Home health nurse
History of chronic #m&es) l Diagn:noses, prognosis, medications Document frequency of visits Chart review Meet with family/client l Comprehensive history l Prenatal, birth apgars, perinatal l Family history l Childhood illnesses, immunizations l Surgeries, hospitalizations l Treatments, medications l Dietary history l Developmental milestones l Activities of daily living Comprehensive physical exam l Vision, hearing, dental Developmental assessment l Gross/fine motor, language skills l Social, emotional, intellectual evaluation l Neurological evaluation l Occupational/physical therapy evaluation l
the PNP to identify health needs, to anticipate problems, and to create a plan of care. An assessment of the family, home environment, and community resources currently being used is the first step in the PNP’s process of case management. l
~~~~~~ONAl School name, phone Teacher/nurse contact Past educational history Individual educational plan Psychometric tests Special class infant stimulation Transportation l Physically handicapped School environment l Experiences with chronic illness
During evening and weekend hours, the supervising physicians for the BEACH program are available for phone triage. Patients can be referred to the hospital’s after-hours clinic as necessary.
A typical
home visit lasts 1 hour and 15 minutes and includes assessment/diagnosis, planning, implementation, and evaluation.
PROCESS OF CARE
One full-time PNP and two part-time PNPs manage a caseload of approximately 45 chronically ill children. Each PNP makes two to five home visits daily (Monday through Friday) as well as seeing children in the outpatient clinic and in the hospital. Several hours a day are spent in case management. Daily patient phone calls are handled by the triage method and may necessitate a home visit if the child is acutely ill. Each child’s home can be reached in a reasonable amount of travel time (45 to 60 minutes). A typical home visit lasts 1 hour and 15 minutes and includes assessment /diagnosis, planning, implementation, and evaluation. Patient and family teaching about the child’s illness, treatment, equipment, and growth and development is provided. Because many of the families are without a phone, PNPs use car phones to maintain contact with physicians and community resources during home visits. School visits are made to assessthe child in the school setting and to ensure that the child’s treatment plan is understood. All patient contact is documented for the hospital medical record, and data are collected for the research project.
Weekly meetings with the supervising physicians provide an update on each patient’s status. Although each PNP has his or her own caseload, patient coverage is shared on scheduled days off. n
DIMENSIONS
OF PRACTICE
Providing comprehensive care for children with chronic illnesses includes attention to four dimensions of practice: (a) case management, (b) management of chronic illness, (c) management of minor pediatric illnesses, and (d) management of well child care. The following subsections address how PNPs in the BEACH program are able to meet the needs of these chronically ill children by providing primary care and case management in the home. Case Management
The goals of the PNP as case manager include providing comprehensive health care, assisting the child in meeting
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W TABLE
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2 Initial assessment: Family data base
his or her optimal level of functioning, and decreasing fragmented health care and health care costs (Task Force on Case Management, 1988). The PNP’s initial assessment of a child enrolled in the REACH program provides the data base needed to begin the delivery of comprehensive care. The problems, strengths, and needs of both the child and the family are determined, and a plan of care is formulated with the help of the family and other health care providers. The PNP collaborates with physicians, specialty nurses, social workers, therapists, and community agencies that are participating in the care of each child. Because the PNP is involved in all aspects of the child’s care, communication between health care providers and continuity of care are enhanced.
A
s case manager, the PNP assesses community services currently used by the family and initiates involvement of other resources as needed.
As case manager, the PNP assessescommunity services currently used by the family and initiates the involvement of other resources as needed. The PNP assists the family with securing basic needs such as food, housing, and medications. It has been our observation that once these basic needs are met, the family is more attentive to their child’s physical and medical needs. The PNP also initiates referrals to resources including respite care, therapies, and educational programs. With these resources in place:, the PNP continues to provide on-
going care and encourages follow-up. Once the family fully participates in meeting the child’s physical and psychosocial needs, the child is more likely to function at his or her optimal level. Management
of Chronic Illness
Before the first meeting with the child, the PNP reviews the child’s illness and the current treatment plan with the referring physician and specialty nurses. The PNP’s role in monitoring the chronic illness at home involves assessment of the following areas of the child’s daily life: the child’s condition, the family’s ability to provide daily care for their child, the use and maintenance of home equipment, and the adequacy of the home environment. The number of intermittent home visits, clinic visits, and phone calls varies according to the child’s needs, but the goal of the PNP is to contact each family at least monthly. Diagnostic studies, medications, and therapies are ordered as needed, per standardized procedures, in consultation with the physician. When a child develops an acute problem, consultation with the physician is made to devise an appropriate treatment plan. For example, if a child with asthma has respiratory distress, the PNP examines the child, aerosol treatments are given, the immunologist is consulted, laboratory work is ordered, and medications are adjusted as needed. If an emergency room visit or hospital admission is warranted, the PNP helps facilitate these through preparation of the family and communication with the health care team. After the acute phase, the PNP coordinates follow-up either in the clinic or through a home visit.
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of Minor Pediatric Illnesses
Minor pediatric illnesses such as otitis media and pharyngitis can be managed by the nurse practitioner in the home. REACH families contact the PNP when the child is acutely ill, and a home visit is made as warranted. Standardized procedures are used to manage these minor pediatric ‘illnesses in phone consultation with the physician. Compliance with the treatment regimen and evaluation of the child’s status are assessedwith a followup home visit.. Management
of Well Child Care
As primary care providers, the PNP’s role includes management of well child care. Using the guidelines of the American Academy of Pediatrics (1985) for health supervision, the PNP addresses the following areas: immunizations, nutrition, development, physical growth, dental care, and health screening. Because children enrolled in the REACH program are chronically ill and cared for in the home, modifications and innovative approaches are used in providing well child care. In addition, PNPs making home visits are in a unique position to do an environmental assessment and to observe family dynamics. A hypothetical case study for a typical child enrolled in the CHHC program who received home intervention from a PNP is found at the end of this article. w IMPACT OF THE PROGRAM
It is our clinical impression that both the chronically ill child and the child’s family have benefited from this program. Many children who frequently used the emer-
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gency room for minor acute illnesses are now being managed effectively in the home. Because the parents promptly contact the PNP for intervention, their child is seen sooner during the acute illness phase, decreasing the likelihood of an emergency room visit or hospitalization. This has been a significant benefit for ventilatordependent children who are difficult to transport. Moreover, chronically ill children who have been hospitalized can go home earlier because PNPs are available for home visits. It is our impression that these interventions have decreased health care costs for these children. This impression will be tested in formal analysis using cost effective techniques. We have observed that the chronic illnesses of many children are better controlled as a result of their increased understanding and compliance with the treatment regimen and follow-up. This has been particularly evident for the children in the program who have diabetes (five patients) and asthma (11 patients). The laboratory values of several children with diabetes improved dramatically within the first 2 months that these children participated in the REACH program, and these values continue to improve. Hospitalizations and visits to the emergency room have been reduced significantly (from multiple hospitalizations to zero to one and from weekly emergency room visits to zero to two per child). Most emergency room visits occur on weekends when the PNPs are not available for home visits. According to school reports, children in the program who have diabetes and asthma have increased their school attendance remarkably. Five families with children who have severe devel-
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opmental delays were frequent users of many hospital services (inpatient stays, clinic visits, emergency room visits, and use of after-hours clinic). These children had uncontrolled seizures (up to 20 per day), recurring infections, and common childhood illnesses. Each family has received primary care, education, social support, and case management through the BEACH program. The number of seizures has decreased to less than three per day through close monitoring of medications by the PNP in consultation with the physician. Infections, which exacerbate seizure disorders, receive prompt treatment at home, and use of the various hospital services, have decreased. The children enrolled in San Diego’s BEACH program did not have accessto primary care providers. The PNPs have provided immunizations, tuberculosis and influenza vaccinations, evaluations of speech/hearing/developmenral status, and fluoride and vitamin supplements . While enrolled in the BEACH Program, six of the 69 patients were removed from their homes because of abuse or ne,glect; five are doing well in foster homes, and one has returned home. Thirty-four of the patients have been active child protection cases; some of them still are active. The PNPs provide monitoring and interventions that, in some cases, have allowed children to remain in their homes. Families have received anticipatory guidance about diseases, supportive counseling, and referrals for essential resources such as food, shelter, and clothing. They have been encouraged to become independent and to take action for their children. Families without phones have been assisted with securing lifeline phones at a reduced cost. When following up with children who have been discharged, we have observed that the families continue to comply with the medical regimen, including giving medications to the child and attending followup appointments. The parents have been more effective advocates for their children. The children are receiving care from a community pediatrician and continue to be followed by their subspecialty physicians. An increased level of compliance is being maintained, and these children are being managed successfully by their parents at home.
Slocial support
provided by the PNPs has assisted many families in coping with the stressors of living with a chronically ill child.
It is our impression that during home visits, nurse practitioners can obtain more information than can be obtained in the clinic setting, including knowledge of family dynamics, the home environment, the family’s management of the child’s illness, and a clearer view of
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the impact of the illness on the family. When PNPs understand why families have not been compliant with the therapeutic regimen, they can more effectively intervene. Social support provided by the PNPs has assisted many families in coping with the stressors of living with a chronically ill child. In summary, we believe that PNPs can effectively provide primary care and case management for chronically ill children in the home. Using the four dimensions of practice: (a) case management, (b) management of chronic illness, (c) management of minor pediatric illnesses, and (d) management of well child care, PNPs have created an appropriate model to provide for the needs of these chronically ill children. Benefits of this method of care delivery have been numerous. We have observed an increase in compliance with the medical regimen as measured by following prescribed diet, taking medications, and attending follow-up appointments. In addition, there has been an increase in school attendance, prevention of hospital admissions and emergency room visits, and more appropriate use of community resources. We believe that the children have received less fragmented and more comprehensive care than they received prior to their enrollment in the BEACH program. It is our hope that this program will be duplicated in other institutions. n n
ACKNOWLEDGEMENTS
We would like to acknowledge the following people for their participation in the REACH program: Irvin A. Kaufman, MD, as Project Director; Herbert Kimmons, MD, as Program Director; Mary Louise Braney, MS, RN, Vice President for the Program; Jonathan Bates, MD, former Project Director; Susan Meister, PhD, RN, FAAN, as Principal Investigator; Shirley Girouard, PhD, RN, FAAN, Program Officer at the Robert Wood Johnson Foundation; A. Todd Davis, MD, Program Director in Chicago; Phil Porter, MD, Healthy Children Director; Mindy Cohn, RN, and Marilyn McFall, BS, RN, Chicago REACH nurses. We are grateful to the Robert Wood Johnson Foundation for the grant which made the REACH Project possible, along with Children’s Hospital and Health Center in San Diego and Children’s Memorial Hospital of Chicago for the funding for the REACH Program. REFERENCES American Academy of Pediatrics. (1985). Guidelinesfi health super&&z. Evanston, IL: Author. Hymovich, D. (1985). Nursing services. In N. Hobbs and J. Perrin (Eds.), Issues in the care of children with chronic illness (pp. 478493). San Francisco: Jossey-Bass. Meister, S.B. (1991). Children’s hospitals REACH out: Content of care and impact in two pilot programs. Final report to the Robert Wood Johnson Foundation. Meister, S.B., Feetham, S.L., Girouard, S., & Durand, B.A. (in press). Creating and extending successful innovations: Practice and policy implications. In: Differentiating nursing practice: Into the twentyfirst century. American Academy of Nursing. Mezey, M. (1986). The mture of primary care and nurse practitioner. In M. Mezey and D. McGivem (Eds.). Nurses, numepractitiunm: The evolution ofpimmy care (pp. 37-49). Boston: Little Brown.
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Mitchell, K. (1!>86). Taking children home where they belong. Pcdiasric Num’ng, 12, 256. Perrin, J. (1985). Introduction. In N. Hobbs and J. Perrin (Eds.). Ima in th care of children with chronic ills (pp. l-10). San Francisco: Jossey-Bass. Pierce, I’., & Freedman, S. (1983). The REACH project: An innovative health delivery model for medically dependent children. CWrcu’s Hcaltb Cart, 12, 86-89. Porter, P. J., & IButler, J. C. (1987). Healthy children: An assessment
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of community based primary care health programs for children and their impact on access,cost and quality. Advmca in Pedhia, 34, 379-410. Scope of Practice Statcm~t for Pediatric Nurse Practitioners Issued. (1974, May). The Am&can Num, 5. Task Force on Case Management in Nursing. (1988). NW@ cuse rnun+mcnt. Kansas City, MO: American Nurses’ Association. Yoos, L. (1987) Chronic childhood illnesses: Developmental issues. Pediatric Nursing, 13, 25-28.
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