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Pediatric nurse practitioners specializing with survivors of childhood cancer
Pediatric Nurse Practitioners Specializing with Survivors . of Childhood Cancer . Wendy
L. Hobbie,
MSN,
PNP, and Patricia
j. Hollen,
PhD,
RN
The evolution of the role of the pediatric nurse practitioner in oncology specializing in the care of childhood cancer survivors is described, with certain aspects of the role solidified or expanded and new functions added. The early concept of the role included three interdependent functions: (a) clinician/caregiver, (b) educator, and (c) researcher. The functions of specialty care provider and educator remain strong; the role of researcher has been expanded, and new role components, clinical/program manager and consultant, have been added. The central focus for the pediatric nurse practitioner in oncology is the survivor and family, which is extended to the clinic population and related groups by the blending of the pediatric nurse practitioner and clinical nurse specialist roles. Any role function on behalf of this clinical population should be assumed as necessary to provide comprehensive care. J PEDIATR HEALTH CARE. (1993). 7, 24-30.
H
obbie (1986) described the role of the pediatric nurse practitioner in oncology (PNP /O) specializing in the care of childhood cancer survivors. The basic focus of this advanced nursing role is to (a) decrease the full negative impact of long-lasting effects of therapy, (b) assist the survivor and family to cope effectively while monitoring and treating late effects, and (c) help the survivor and family gain perspective on the cancer experience so that they can be vigilant toward potential late effects. This practice area has changed in the last 6 years because of an increasing population of survivors, the result of advances in cancer therapies and a growing body of knowledge related to the high-risk and longterm needs of the survival population. As survivors’ unique needs have become more apparent, the role of the PNP/O has been refined and expanded upon, thus warranting reexamination of the role. n
CURRENT SURVIVOR STATUS
Long-term survivors continue to be defined by researchers as children who have been disease-free for at least 5 years and who have been off therapy for 2 or more years. Sixty percent of all children diagnosed with cancer will achieve this status of survival, resulting in an estimated 125,000 to 150,000 survivors of childhood can-
Wendy L. Hobbie is the Project Director of the Teen Survivorship Study for the School of Nursing at the University of Rochester, Rochester, New York. Patricia J. Hollen is an assistant professor for the School University of Rochester, Rochester, New York.
of Nursing
at the
Reprint requests: Wendy L. Hobbie, MSN, PNP, School of Nursing, University of Rochester, 601 Elmwood Ave., Box HWH, Rochester, NY 14642. 25/l/37079
24
cer in 1990 (Bleyer, 1990; Meadows & Hobbie, 1986; Morris- Jones & Craft, 1990). Based on Bleyer’s (1990) projections, this survivor population will increase 5500 annually. These survival rates have improved because of the advent of multimodal therapy (that is, chemotherapy, radiation, and surgery) and supportive care (that is, symptom management or quality of life enhancement). Unfortunately, the very treatment that cures these children often causes deleterious physical, physiologic, cognitive, and psychosocial late effects. The adverse effects of lifesaving therapy result from persistent injury to normal tissue. They are caused by lack of nourishment to healthy cells, chronic cell injury, death of cells with subsequent loss of normal fimctioning, and scar tissue formation (Hobbie, Ruccione, Moore, & Truesdale, 1992). Fibrotic lung damage, myocardial dysfunction, liver damage, cognitive impairment, second malignancies, and cosmetic changes are just a few of the possible effects of chemotherapy and radiation. These effects may become apparent several months to years after the completion of therapy and require systematic evaluation and follow-up by health care professionals (Meadows & Hobbie, 1986). n
HISTORIC DEVELOPMENT OF THE ROLE
The cure rates for childhood cancer have only begun to rise since the mid 197Os, thereby warranting a specialized health care provider. The nursing community recognized the need for an innovative role like the PNP/O during that time. In 1976, a Pediatric Nurse Practitioner Program in Oncology was developed by the Oncology Division at Children’s Hospital of Philadelphia. This program focused on the development of PNP skills, such as history taking and physical assess0891-5245/93/$1.00
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ment, with an emphasis on oncology. Some PNP/Os sought an additional program to obtain skills aligned with the clinical nurse specialist (CNS), such as those of educating and researching. In 1983, the first follow-up clinic for long-term survivors, established in the same department of that institution, was coordinated by a PNP/O who implemented both the PNP and CNS roles. The focus of the clinical program was to provide continuity of care to survivors through systematic evaluation and treatment. The number of follow-up clinics such as this has increased from six in the mid 1980s to approximately 30 at this writing. Kitzman (1983, 1989) first described the blending of PNP and CNS roles that has been occurring for some time. According to K&man, the PNP role primarily focuses on direct care of the individual patient and family within a wide range of common health and illness problems; the CNS role is aimed at both direct and indirect care of specific populations based on age and identified health care problems. Gleeson et al. (1990) also described an advanced practice nursing role that blends the functions of direct care provider with the indirect care roles of change agent, community liaison, consultant, and researcher. Masters degree programs in nursing are beginning to hybridize curricula that prepare nurse practitioners and CNSs. These changes are viewed as the future direction for primary care and specialty care nursing and as a means of increasing the profession’s leadership, autonomy, and responsiveness to the health care environment (Bidwell-Cerone, 199 1). Strategies to enhance leadership skills in complex organizations and with aggregates of patients, such as needs assessment and program planning, are being taught elsewhere in nurse practitioner curricula (Selby & Tuttle, 1987; Bidwell-Cerone, 1991). n
THE CURRENT ROLE OF THE PNP/O
The PNP/O has evolved in a fashion consistent with the trends described for advanced-practice nursing in general. The role was originally envisioned modestly as one that identifies the population of long-term survivors, informs them of available services, and helps meet their unique needs. The early concept of the role included three interdependent functions: (a) clinician/caregiver, (b) educator, and (c) researcher. The functions of specialty care provider (formerly clinician/caregiver) and clinical/community educator remain strong; the role of researcher has been expanded, and new role components, clinical/program manager and consultant, have been added (Figure). From a systems perspective, the primary focus and energy of the role flows from direct care of individual survivors and high-risk subgroups to indirect care of the clinic population of survivors as a collective and of the community-at-large.
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Specialty Care Provider
The direct care function for the PNP/O continues to be based on sound knowledge of the potential longterm consequences of cancer therapy. Clinical expertise is essential in detecting abnormalities obtained from a comprehensive history and a physical examination. Early identification of both actual and potential late effects is imperative to make early intervention possible. The PNP/O needs to offer clear and concise explanations of these late effects at appropriate educational levels to gain the confidence of the survivors and their families; these explanations must be carefully given to reduce uncertainty. Interventions must be tailored for each survivor’s actual or potential sequela of treatment. In addition, the PNP/O must have a broad background in growth and development to frame the late effects and to counsel effectively.
R
estoration of normalcy to the family unit remains an important goal for the PNP/O.
The specialty care provider monitors long-term care of this formerly acutely ill population. The demarcation between the primary care provider’s role and that of the PNP/O in routine care is clear cut. All routine care, including minor illness, is first filtered through the local primary care provider, a family’s pediatrician or physician. However, if a family is concerned about an illness in relation to the past medical history of cancer, then even a minor illness should be evaluated by the PNPIO. The concerns of survivors, families, and health care providers today are the same as those identified by Hobbie in 1986: (a) return of disease; (b) risk of second malignancies; (c) vital organ function; (d) linear growth and intellectual and psychosocial development; and (e) sexual maturation and fertility. The study by Wilimas, and Fairclough Wasserman, Thompson, (1987), involving 40 survivors, found that survivors (33%) were concerned about recurrence of a second malignancy, but they were using denial to deal with this threat. Restoration of normalcy to the family unit remains an important goal for the PNP / 0. This entails assisting these survivors and their families as they deal with every day consequences of cancer therapy. Putting past events in perspective is a difficult task with which most survivors need assistance. Success in this regard is essential if they are to accept their medical past and move forward in achieving future goals. The crisis of having a child diagnosed with cancer shakes the basic structure of the family. Parents question their ability to cope and parent as they experience a heightened sense of vulnerability through the various phases of diagnosis and treatment. Parents are often
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TOTAL
,’
,’
,’
,’,’ ,’ ,’
COMMUNITY-AT-LARGE
n FIGURE A systems model of the role of the pediatric nurse (PNP/O) with the high-risk population of survivors of childhood
thrown into another crisis when they are informed of actual or potential late effects. Every member of the family is affected because they all struggle with the meaning of cancer as a chronic disease, in that they must be vigilant toward actual and potential late effects. Resolution of this second crisis is difficult but generally quicker as they journey toward acceptance and internalization of the cancer experience as chronic; knowing that the child has survived and that the family has withstood the earlier crisis accelerates this transition (Hopson & Adams, 1976). The l?NP/O can facilitate this transition process by helping the family deal positively with actual late effects and by ensuring they are vigilant but not over-alarmed, about potential late effects. Families need help recognizing the positive outcomes of cancer treatment in the face of certain negative consequences. They need to know they play a significant role in achieving and maintaining long-term survival. Recognizing differing parenting abilities is a part of assessment. Educated parents tend to use significantly more externally-directed coping strategies, such as problem-solving and searching for information; they use fewer passive strategies, such as denial, acceptance, and reliance on religion (Chesler & Barbarin, 1987). Mothers tend to use religion and searching for information
CLINIC
practitioner cancer.
specializing
in oncology
more often than fathers, who tend to use denial more often (Chesler & Barbarin, 1987). Parental income and socioeconomic status were significantly related to overall adjustment of survivors (Koocher & O’Malley, 1981). The lower the income, the more adjustment problems appear. With knowledge of past research in mind, the PNP/O can plan interventions accordingly. Normalcy at home follows quickly when parents begin to gain more confidence in their coping and parenting skills. Educator
The clinical/community educator aspect of this advanced practice role remains strong. Providing information to survivors and families continues to be a vital function of the PNP/O role. Certain concepts regarding survival need to be continually reinforced. Koocher and O’Malley (1981) found that parents had lingering concerns of reoccurrence, second malignancies, and late effects regardless of length of survival, a finding which continues to be supported through clinical experience. Factual information must be carefully woven with hope and support to reduce uncertainty as much as possible. The information needs of survivors andtheir families can best be met if the PNP/O is familiar with a wide
Journalof Pediatric
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range of the latest approaches to treatment for late effects, for example, plastic surgery techniques or referral for teaching methods to strengthen abstract reasoning skills for math competency. Knowledge of available literature is particularly beneficial. The PNP/O should suggest development of or should offer to be involved in the creation of literature when none exists. An example of educational materials for survivors developed by PNP / OS is a pamphlet/record entitled, ‘Taking Care of Yourself for Life,” developed to help young adult survivors become aware of their treatment and its actual and potential late effects (Ruccione & Hobbie, 1989). This record is particularly helpful for college students or young adults who are emancipated. It helps provide the survivor with an accurate history of past treatment, and it suggests follow-up care for actual and potential late effects. The PNP/O has an educational role within the community-at-large in addition to the role of the patient
T
he PNP/O has an educational role within the community-at-large in addition to the role of patient and family educator.
and family educator. The stigma of cancer still remains although major strides have been made in public awareness of cancer. Since 1985, special interest groups such as the National Coalition of Cancer Survivors have educated not only the surviving population, but the larger community as well. Nonetheless, a concerted effort is needed on the part of specialty care providers to promote accurate information and to provide innovative approaches to care in the community. Teachers continue to be a significant group for whom the PNP/O needs to provide accurate information related to students’ needs in the classroom. The attitudes of teachers and fellow students are critical in a survivor’s concepts of normalcy. Moreover, some learning problems caused by central nervous system prophylactic therapy have been minimized by individualized instruction, tutoring, and parental support (Peckham, Meadows, Bartel, & Marrero, 1988). Cognitive late effects are well documented for survivors of acute lymphocytic leukemia treated with 2400 cGy cranial radiation, intrathecal methotrexate, and high-dose intravenous methotrexate. Peckham and colleagues (1988) delineated these cognitive effects as impairment of attention/concentration, memory, sequencing, and comprehension during school work. Teachers play a pivotal part in the recognition of learning disabilities such as these and in their remediation in the classroom by tailored educational plans. Educating personnel in insurance companies to realistically evaluate actual and potential late effects continues to be a primary target of the PNP/O. The findings
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of Koocher and O’Malley (1981), that survivors experienced discrimination when seeking health and life insurance, obtaining jobs, and entering the military service and other governmental positions, continue to be supported clinically. The PNP/O needs to provide anticipatory guidance regarding this discrimination and either educate young adult survivors and their families on their legal rights or refer them to an attorney. Writing supportive letters and putting survivors in contact with available resources for information, such as the Childhood Candlelighters Foundation, American Cancer Society, Leukemia Society, National Cancer Institute, and the National Coalition of Cancer Survivors, is imperative. The PNP/O in specialty practice plays a role in educating the professional community about survivorship in many ways. Corresponding with local physicians improves the continuity of care and ensures the consistency of information given to the family. Lecturing at professional meetings, interacting in cooperative study groups, and pub1 ish ing articles about important approaches to care continue to be effective ways to disseminate information about survivors. In sum, the PNP/O is a versatile source of information related to actual and potential late effects of childhood cancer for survivors and their families, educational and health care professionals, and the community-at-large. Clinical/Program
Manager of Nurse-Run Clinics
Follow-up clinics for long-term survivors have predominantly been nurse-run clinics to date. In one such clinic at Strong Children’s Medical Center in Rochester, New York, the PNP/O is part of a multi-disciplinary team that includes a pediatric oncologist, radiation oncologist, psychologist, social worker, school liaison, and identified specialty physicians (such as, orthopedist). This team meets routinely to evaluate the physical, physiologic, and psychosocial effects of surviving cancer. However, the PNP/O compiles the pertinent infor-
T
he PNP/O in specialty practice plays a role in educating the professional community about survivorship.
mation and begins to formulate a list of studies that will best evaluate an individual survivor at the time of the yearly visit. This information is compiled in a computerized data bank for easy retrieval in clinical and research use. During the weekly team meetings, the PNP / 0 gen.erally acts as the leader/facilitator, presents each survivor’s history, and validates the appropriate evaluations with the other team members. The PNP/O completes a patient history and a complete physical examination on the day of the visit. The pediatric oncologist and radiation oncologist meet with the survivor and family
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and discuss any questions related to their areas of expertise. After the visit, the PNP / 0 completes all followup tests, makes all referrals, and obtains all family feedback. In essence, the PNP/O has overall responsibility for clinical effectiveness in collaboration with the oncology medical director. Nurses have taken on more leadership in outpatient clinics, and case management has become a role component of the PNP/O. Case management or care coordination has been described as “assessment, risk appraisal, care planning and team conferencing, service referral and procurement, monitoring and tracking, and reassessment” (Weiss, 1987, p. 275). The case manager assures continuity of high quality care over a broad spectrum of services, from prevention to tertiary care, by being a primary resource person to help the patient and family navigate complex health systems (Faherty, 1990). The PNP/O must provide clinical case management for each survivor and family by coordinating services among the multiple disciplines, monitoring actual and potential late effects. Program case management can be conceptualized as providing care to groups and populations with similar needs. The PNP/O has the opportunity to synthesize the unmet needs of this population of survivors through a triangulation of methods (Goeppinger & Shuster, 1992; Kimchi, Polivka, & Stevenson, 1991). Use of a triangulation of methods for a population of survivors could be (a) interviewing or surveying the survivors and their families in the clinic setting as consumers of services, (b) collating information from key informants (members of the multi-disciplinary team or colleagues specializing in survivor care), and (c) integrating current literature related to actual and potential late effects. This use of multiple, complementary methods prevents bias in program development and production of unmarketable services. Program case management, when it focuses on the special unmet needs of the survivor population, provides the basis for strategic program planning in collaboration with the program medical director and other team members. As program money becomes tighter, the PNP/O will need to base program development on a wellgrounded needs assessment and on proven marketing strategies to obtain needed funding. An example of a needs assessment recently completed with parents of children with brain tumors at the University of Rochester, Strong Children’s Medical Center in Rochester, New York, revealed little in the literature, yet parents perceived their needs as unique from parents of other survivors with other diagnoses (Cable & Maurais, 1991). Some of the recommendations of the needs assessment were a day-long conference for parents, a parents’ support group, extension of the educational liaison’s role, increased linkage between radiology/oncol-
ogy and hematology/oncology for better continuity of care, and the development of local policy. Thus, the PNP/O is also responsible for the growth of programs and services for survivors and their families. Activities that promote a comprehensive program for survivors are necessary for effective program management by the PNP/O. Eliminating those aspects of the program that are obsolete and creating new ones based on documented needs keeps the program viable. Approaching local foundations or cancer organizations, if necessary, to obtain external funds to expand the program may be a future role for the PNP/O. Such tasks may seem monumental, but resources are generally available. The PNP/O also develops effective data information systems. Change may need to come slowly in some organizations, but providers aware of information management recognize that outdated information systems take up precious time and are not cost effective. Ethically, the PNP/O creates a standard of care for the aggregate of survivors through the role of program case management, resulting in comprehensive and quality services for the clinic population. Using this standard within the role of clinical case manager, the advanced practitioner determines what services the survivor and family should receive. The implications of nurse-run clinics are many. For survivors and their families, these clinics offer easy access to a specialty care provider and thus increase the likelihood of continuity of care. For hospital administrators, nurse-run clinics offer the opportunity to provide innovative care to high-risk individuals and to groups with
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urses have taken on more leadership in outpatient clinics, and case management has become a role component of the PNP/O.
common needs, thus enhancing services and marketability while reducing costs. Nurse-run clinics also offer the PNP/O autonomy and the opportunity to extend the limits of the nursing profession. Researcher
In the Hobbie (1986) description of the PNP/O role, the function of researcher was oriented toward data collection and management of clinical information for a given study with some involvement in research planning and data synthesis toward protocols for follow-up care. This component of the PNP/O role has evolved to become more collaborative. Masters-prepared nurses have claimed a significant role as clinical experts with survivors and need to consider working with doctorally prepared nurses or physicians on research projects. The desire, much less the expectation, to conduct clinical research as a principal investigator may not be realistic
Journal of Pediatric Health Care
for clinicians providing holistic care to a high-risk population. However, the union between the specialty care provider and a doctorally prepared nurse or physician provides an excellent way to conduct research as a coinvestigator or research associate. Several collaborative studies are currently underway in the follow-up clinic at the University of Rochester, Strong Children’s Medical Center in Rochester, New York. Hollen and Hobbie are conducting a study involving the reduction of risk behaviors for cancer-surviving adolescents. In addition, several physiologic studies to evaluate long-term effects are being conducted at the same time. Combining the expertise of a clinical expert with a research expert strengthens the possibility of obtaining highly competitive funding and successfully meeting research aims.
A
ctivities that promote a comprehensive program for survivors are necessary for effective program management by the PNP/O. Because the PNP/O is the case manager who knows the needs of the clinic population of survivors, the PNP/O is best able to (a) assist in/or determine research questions or hypotheses, (b) monitor access to the survivors so that they are not deluged by researchers, (c) coordinate the clinical studies conducted with this population at a given site to minimize time demands on both survivors and researchers, and (d) ensure that protocols do not interfere with one another, thus protecting the researchers’ outcomes. This comprehensive review of all studies for this aggregate is different from the intensive individual study review by a human subjects review board. The PNP/O needs to weigh the importance of a research study, family time expended, invasion of privacy or dignity, and interruption of staff time and its impact on clinic flow. Consultant Archer, Kelly, and Bisch (1984) described the consultant as an expert in a particular field, with either specific knowledge or skills, who uses a collaborative helping process in planned change or evaluation. Consultation with another professional regarding an individual case should not be confused with consultancy, focusing on role, educational, or management issues of a larger scale (Reed, Greer, McKay, & Knight, 1990). The consultant function for the PNP/O has become more important over the last few years as more institutions recognize the importance of systematic evaluation in establishing clinics tailored to the specific needs of a population, In addition, community organizations often seek help in program planning for high-risk populations.
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The PNP / 0 promotes a better understanding of survivorship by participating in community organizations and by professional networking. As the PNP/O keeps current in this specialized field, accumulates clinical experience, and participates in research, the role of consultant becomes a reality on the local level, and gradually more distant sites and larger projects become possible. The formal role of clinical/program consultant is at times difficult for the PNP / 0 because of a lack of formal education and few role models within nursing. Informal networking in person and by telephone is recommended when working to establish oneself as an expert. Information-seeking phone calls often lead to guest lectures and requests to assist institutions and agencies in special projects. Nurses have traditionally shared their knowledge and experience without acknowledgment or remuneration, but for the information and time to be valued, an external institution must be charged. An appropriate consultation fee can be determined by assessing the current rate charged by colleagues performing similar services. n
CONCLUSION
The role of the PNP/O has been evolving since the late 1970s to meet the demands of an increasing cancersurviving population with special needs related to actual and potential late effects. Essentially, the central focus for the PNP/O is the survivor and family, which is extended to the clinic population and related groups. Any role on behalf of this clinical population should be assumed as necessary to provide comprehensive care. Nurse-run clinics provide the opportune setting for the PNP/O to blend the role functions of the PNP and the CNS in an advanced practice role as the direction for care in the coming decades. Long-term survivors of childhood cancer are a unique population with high-risk needs. Because significant financial and emotional support is given to survivors during cancer treatment, protecting this investment is imperative, not only from an economic perspective but from a humanistic perspective as well. Providing specialized care through the role of the PNP/O has direct implications for the quality of life for survivors and their families and for health care costs. With the number of childhood cancer survivors increasing, providing health promotional care, tailored to the specific needs of survivors, will be crucial in the future. Moreover, this model for specialization can be applied to other high-risk populations that require systematic evaluation for effective care. n REFERENCES Archer, S. E., Kelly, C. D., & Bisch, S. A. (1984). Inzplementing change in wmmunities: A wL!ubarative pocess. (pp. 68-87). St. Louis: C. V. Mosby. Bidwell-Cerone,S. R. (1991). Preparing for the advanced practice
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role of the future: A curriculum to hybridize clinical nurse specialists and nurse practitioners. University of Rochester, School of Nursing, Rochester, New York. Unpublished manuscript. Bleyer, W. A. (1990). The impact of childhood cancer on the United States and the world. CA-A Cancer Journalfor Clinicians, 40, 355367. Cable, G., & Maurais, J. (1991). Needs assessment for parents of children with brain tumors. University of Rochester, School of Nursing, Rochester, New York. Unpublished manuscript. Chesler, M. A., & Barbarin, 0. A. (1987). Childhwd canner and the family: Meeting the challenge ofstress and support. New York: Brun ner/Mazel. Faherty, B. (1990). Case management, the latest buzzword: What it is, and what it isn’t. Caring, 9, 20-22. Gleeson, R. M., Mcilvain-Simpson, G., Boos, M. L., Sweet, E., Trzcinski, K. M., Solberg, C. A., & Doughty, R. A. (1990). Advanced practice nursing: A model of collaborative care. Amertin Journal ofMaternal Child Nursing, 15, 9-10, 12. Goeppinger, J., & Shuster, G. F. (1992). Gxnrnunity as client: Using the nursing process to promote health. In M. Stanhope, & J. Lancaster, Cummunity health nursing: Process and pm&e for pmmotiwhealth (3rded.), (pp. 253-276). St. Louis: C. V. Mosby. Hobbie, W. L. (1986). The role of the pediatric oncology nurse specialist in a follow-up clinic for long-term survivors of childhood cancer. Journal of the Associh~n of Pediatric Oncolgy ,Nurses, 3, 912, 24. Hobbie, W. L. Ruccione, K., Moore, I., & Truesdell, S. (in press). Long-term survivors. In G. V. Foley, D. Fochtman, & K. Mooney (Eds.), Nursing care ofthe child titb cuncer (2nd ed). Philadelphia: W. B. Saunders. Hopson, B., &Adams, J. (1976). Towards an understanding of transition: Defining some boundaries of transition dynamics. In J. Adams, J. Hayes, & B. Hopson, Tram&m: Understanding and mn&nfl persmral change (pp. 3-25). Montclair, NJ: Allanheld, Osmun Universe Books.
The JOURNAL is abstracted
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Kimchi, J., I’olivka, B., & Stevenson, J. S. (1991). Triangulation: Operational definitions. Nursiw Research, 40, 364-366. Kinsman, H. J. (1983). The CNS and the nurse practitioner. In A. B. Hamric & J. Spross (Eds.), The clinical nune specklist in tbeq andpractice (pp. 275290). New York: Grune & Stratton. K&man, H. J. (1989). The CNS and the nurse practitioner. In A. B. Hamric & J. Spross (Eds.), The clinical nurse specialist in tbemy andpractice (2nd ed.), (pp. 381-394). Philadelphia: W. B. Saunders. Koocher, G. I’., & O’Malley, J. E. (1981). The damocles syndrome: Psychosociul consequences of surviving childhood cancer. New York: McGraw-Hill. Meadows, A. T., & Hobbie, W. L. (1986). The medical consequences of cure. Cancer, 58(suppl), 524528. Morris-Jones, P. H., & Craft, A. W. (1990). Childhood cancer: Cure at what cost? Archives of Dhease in Childhood, 65, 638-640. Peckham, V. C., Meadows, A. T., Bartel, N., & Marrero, 0. (1988). Educational late effects in long-term survivors of childhood acute lymphocytic leukemia. Pediatriu, 81, 127-133. Reed, C., Greer, A., McKay, C., & Knight, C. (1990). Process issues in consultancy. Journal ofAdolescence, 13, 387-400. Ruccione, K., & Hobbie, W. L. (1989). Taking care ofyourselffw life. (Available from W. L. Hobbie, University of Rochester, School of Nursing, Rochester, New York). Selby, M. L., &Tuttle, D. M. (1987). Community health assessment and program planning in the nurse practitioner curriculum: Evaluation of a guided design learning module. Public Health Nursing, 4, 160-165. Wasserman, A. L., Thompson, E. I., Wilimas, J. A., & Fairclough, D. L. (1987). The psychological status of survivors of childhood/adolescent Hodgkin’s disease. American Journal of Diceares of Children, 141, 626-631. Weiss, L. J. (1987). Care coordination: An integration mechanism. In C. J. Evashwick & L. J. Weiss (Eds.), ManaBing the continuum of care, (pp. 271-291). Rockville, MD: Aspen.
Index, the Cumulative
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toNursing
&AUiedHealth
Liter&m,
and MEDLINE.
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L. Hobbie,
MSN,
PNP, and Patricia
j. Hollen,
PhD,
RN
The evolution of the role of the pediatric nurse practitioner in oncology specializing in the care of childhood cancer survivors is described, with certain aspects of the role solidified or expanded and new functions added. The early concept of the role included three interdependent functions: (a) clinician/caregiver, (b) educator, and (c) researcher. The functions of specialty care provider and educator remain strong; the role of researcher has been expanded, and new role components, clinical/program manager and consultant, have been added. The central focus for the pediatric nurse practitioner in oncology is the survivor and family, which is extended to the clinic population and related groups by the blending of the pediatric nurse practitioner and clinical nurse specialist roles. Any role function on behalf of this clinical population should be assumed as necessary to provide comprehensive care. J PEDIATR HEALTH CARE. (1993). 7, 24-30.
H
obbie (1986) described the role of the pediatric nurse practitioner in oncology (PNP /O) specializing in the care of childhood cancer survivors. The basic focus of this advanced nursing role is to (a) decrease the full negative impact of long-lasting effects of therapy, (b) assist the survivor and family to cope effectively while monitoring and treating late effects, and (c) help the survivor and family gain perspective on the cancer experience so that they can be vigilant toward potential late effects. This practice area has changed in the last 6 years because of an increasing population of survivors, the result of advances in cancer therapies and a growing body of knowledge related to the high-risk and longterm needs of the survival population. As survivors’ unique needs have become more apparent, the role of the PNP/O has been refined and expanded upon, thus warranting reexamination of the role. n
CURRENT SURVIVOR STATUS
Long-term survivors continue to be defined by researchers as children who have been disease-free for at least 5 years and who have been off therapy for 2 or more years. Sixty percent of all children diagnosed with cancer will achieve this status of survival, resulting in an estimated 125,000 to 150,000 survivors of childhood can-
Wendy L. Hobbie is the Project Director of the Teen Survivorship Study for the School of Nursing at the University of Rochester, Rochester, New York. Patricia J. Hollen is an assistant professor for the School University of Rochester, Rochester, New York.
of Nursing
at the
Reprint requests: Wendy L. Hobbie, MSN, PNP, School of Nursing, University of Rochester, 601 Elmwood Ave., Box HWH, Rochester, NY 14642. 25/l/37079
24
cer in 1990 (Bleyer, 1990; Meadows & Hobbie, 1986; Morris- Jones & Craft, 1990). Based on Bleyer’s (1990) projections, this survivor population will increase 5500 annually. These survival rates have improved because of the advent of multimodal therapy (that is, chemotherapy, radiation, and surgery) and supportive care (that is, symptom management or quality of life enhancement). Unfortunately, the very treatment that cures these children often causes deleterious physical, physiologic, cognitive, and psychosocial late effects. The adverse effects of lifesaving therapy result from persistent injury to normal tissue. They are caused by lack of nourishment to healthy cells, chronic cell injury, death of cells with subsequent loss of normal fimctioning, and scar tissue formation (Hobbie, Ruccione, Moore, & Truesdale, 1992). Fibrotic lung damage, myocardial dysfunction, liver damage, cognitive impairment, second malignancies, and cosmetic changes are just a few of the possible effects of chemotherapy and radiation. These effects may become apparent several months to years after the completion of therapy and require systematic evaluation and follow-up by health care professionals (Meadows & Hobbie, 1986). n
HISTORIC DEVELOPMENT OF THE ROLE
The cure rates for childhood cancer have only begun to rise since the mid 197Os, thereby warranting a specialized health care provider. The nursing community recognized the need for an innovative role like the PNP/O during that time. In 1976, a Pediatric Nurse Practitioner Program in Oncology was developed by the Oncology Division at Children’s Hospital of Philadelphia. This program focused on the development of PNP skills, such as history taking and physical assess0891-5245/93/$1.00
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ment, with an emphasis on oncology. Some PNP/Os sought an additional program to obtain skills aligned with the clinical nurse specialist (CNS), such as those of educating and researching. In 1983, the first follow-up clinic for long-term survivors, established in the same department of that institution, was coordinated by a PNP/O who implemented both the PNP and CNS roles. The focus of the clinical program was to provide continuity of care to survivors through systematic evaluation and treatment. The number of follow-up clinics such as this has increased from six in the mid 1980s to approximately 30 at this writing. Kitzman (1983, 1989) first described the blending of PNP and CNS roles that has been occurring for some time. According to K&man, the PNP role primarily focuses on direct care of the individual patient and family within a wide range of common health and illness problems; the CNS role is aimed at both direct and indirect care of specific populations based on age and identified health care problems. Gleeson et al. (1990) also described an advanced practice nursing role that blends the functions of direct care provider with the indirect care roles of change agent, community liaison, consultant, and researcher. Masters degree programs in nursing are beginning to hybridize curricula that prepare nurse practitioners and CNSs. These changes are viewed as the future direction for primary care and specialty care nursing and as a means of increasing the profession’s leadership, autonomy, and responsiveness to the health care environment (Bidwell-Cerone, 199 1). Strategies to enhance leadership skills in complex organizations and with aggregates of patients, such as needs assessment and program planning, are being taught elsewhere in nurse practitioner curricula (Selby & Tuttle, 1987; Bidwell-Cerone, 1991). n
THE CURRENT ROLE OF THE PNP/O
The PNP/O has evolved in a fashion consistent with the trends described for advanced-practice nursing in general. The role was originally envisioned modestly as one that identifies the population of long-term survivors, informs them of available services, and helps meet their unique needs. The early concept of the role included three interdependent functions: (a) clinician/caregiver, (b) educator, and (c) researcher. The functions of specialty care provider (formerly clinician/caregiver) and clinical/community educator remain strong; the role of researcher has been expanded, and new role components, clinical/program manager and consultant, have been added (Figure). From a systems perspective, the primary focus and energy of the role flows from direct care of individual survivors and high-risk subgroups to indirect care of the clinic population of survivors as a collective and of the community-at-large.
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Specialty Care Provider
The direct care function for the PNP/O continues to be based on sound knowledge of the potential longterm consequences of cancer therapy. Clinical expertise is essential in detecting abnormalities obtained from a comprehensive history and a physical examination. Early identification of both actual and potential late effects is imperative to make early intervention possible. The PNP/O needs to offer clear and concise explanations of these late effects at appropriate educational levels to gain the confidence of the survivors and their families; these explanations must be carefully given to reduce uncertainty. Interventions must be tailored for each survivor’s actual or potential sequela of treatment. In addition, the PNP/O must have a broad background in growth and development to frame the late effects and to counsel effectively.
R
estoration of normalcy to the family unit remains an important goal for the PNP/O.
The specialty care provider monitors long-term care of this formerly acutely ill population. The demarcation between the primary care provider’s role and that of the PNP/O in routine care is clear cut. All routine care, including minor illness, is first filtered through the local primary care provider, a family’s pediatrician or physician. However, if a family is concerned about an illness in relation to the past medical history of cancer, then even a minor illness should be evaluated by the PNPIO. The concerns of survivors, families, and health care providers today are the same as those identified by Hobbie in 1986: (a) return of disease; (b) risk of second malignancies; (c) vital organ function; (d) linear growth and intellectual and psychosocial development; and (e) sexual maturation and fertility. The study by Wilimas, and Fairclough Wasserman, Thompson, (1987), involving 40 survivors, found that survivors (33%) were concerned about recurrence of a second malignancy, but they were using denial to deal with this threat. Restoration of normalcy to the family unit remains an important goal for the PNP / 0. This entails assisting these survivors and their families as they deal with every day consequences of cancer therapy. Putting past events in perspective is a difficult task with which most survivors need assistance. Success in this regard is essential if they are to accept their medical past and move forward in achieving future goals. The crisis of having a child diagnosed with cancer shakes the basic structure of the family. Parents question their ability to cope and parent as they experience a heightened sense of vulnerability through the various phases of diagnosis and treatment. Parents are often
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TOTAL
,’
,’
,’
,’,’ ,’ ,’
COMMUNITY-AT-LARGE
n FIGURE A systems model of the role of the pediatric nurse (PNP/O) with the high-risk population of survivors of childhood
thrown into another crisis when they are informed of actual or potential late effects. Every member of the family is affected because they all struggle with the meaning of cancer as a chronic disease, in that they must be vigilant toward actual and potential late effects. Resolution of this second crisis is difficult but generally quicker as they journey toward acceptance and internalization of the cancer experience as chronic; knowing that the child has survived and that the family has withstood the earlier crisis accelerates this transition (Hopson & Adams, 1976). The l?NP/O can facilitate this transition process by helping the family deal positively with actual late effects and by ensuring they are vigilant but not over-alarmed, about potential late effects. Families need help recognizing the positive outcomes of cancer treatment in the face of certain negative consequences. They need to know they play a significant role in achieving and maintaining long-term survival. Recognizing differing parenting abilities is a part of assessment. Educated parents tend to use significantly more externally-directed coping strategies, such as problem-solving and searching for information; they use fewer passive strategies, such as denial, acceptance, and reliance on religion (Chesler & Barbarin, 1987). Mothers tend to use religion and searching for information
CLINIC
practitioner cancer.
specializing
in oncology
more often than fathers, who tend to use denial more often (Chesler & Barbarin, 1987). Parental income and socioeconomic status were significantly related to overall adjustment of survivors (Koocher & O’Malley, 1981). The lower the income, the more adjustment problems appear. With knowledge of past research in mind, the PNP/O can plan interventions accordingly. Normalcy at home follows quickly when parents begin to gain more confidence in their coping and parenting skills. Educator
The clinical/community educator aspect of this advanced practice role remains strong. Providing information to survivors and families continues to be a vital function of the PNP/O role. Certain concepts regarding survival need to be continually reinforced. Koocher and O’Malley (1981) found that parents had lingering concerns of reoccurrence, second malignancies, and late effects regardless of length of survival, a finding which continues to be supported through clinical experience. Factual information must be carefully woven with hope and support to reduce uncertainty as much as possible. The information needs of survivors andtheir families can best be met if the PNP/O is familiar with a wide
Journalof Pediatric
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range of the latest approaches to treatment for late effects, for example, plastic surgery techniques or referral for teaching methods to strengthen abstract reasoning skills for math competency. Knowledge of available literature is particularly beneficial. The PNP/O should suggest development of or should offer to be involved in the creation of literature when none exists. An example of educational materials for survivors developed by PNP / OS is a pamphlet/record entitled, ‘Taking Care of Yourself for Life,” developed to help young adult survivors become aware of their treatment and its actual and potential late effects (Ruccione & Hobbie, 1989). This record is particularly helpful for college students or young adults who are emancipated. It helps provide the survivor with an accurate history of past treatment, and it suggests follow-up care for actual and potential late effects. The PNP/O has an educational role within the community-at-large in addition to the role of the patient
T
he PNP/O has an educational role within the community-at-large in addition to the role of patient and family educator.
and family educator. The stigma of cancer still remains although major strides have been made in public awareness of cancer. Since 1985, special interest groups such as the National Coalition of Cancer Survivors have educated not only the surviving population, but the larger community as well. Nonetheless, a concerted effort is needed on the part of specialty care providers to promote accurate information and to provide innovative approaches to care in the community. Teachers continue to be a significant group for whom the PNP/O needs to provide accurate information related to students’ needs in the classroom. The attitudes of teachers and fellow students are critical in a survivor’s concepts of normalcy. Moreover, some learning problems caused by central nervous system prophylactic therapy have been minimized by individualized instruction, tutoring, and parental support (Peckham, Meadows, Bartel, & Marrero, 1988). Cognitive late effects are well documented for survivors of acute lymphocytic leukemia treated with 2400 cGy cranial radiation, intrathecal methotrexate, and high-dose intravenous methotrexate. Peckham and colleagues (1988) delineated these cognitive effects as impairment of attention/concentration, memory, sequencing, and comprehension during school work. Teachers play a pivotal part in the recognition of learning disabilities such as these and in their remediation in the classroom by tailored educational plans. Educating personnel in insurance companies to realistically evaluate actual and potential late effects continues to be a primary target of the PNP/O. The findings
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of Koocher and O’Malley (1981), that survivors experienced discrimination when seeking health and life insurance, obtaining jobs, and entering the military service and other governmental positions, continue to be supported clinically. The PNP/O needs to provide anticipatory guidance regarding this discrimination and either educate young adult survivors and their families on their legal rights or refer them to an attorney. Writing supportive letters and putting survivors in contact with available resources for information, such as the Childhood Candlelighters Foundation, American Cancer Society, Leukemia Society, National Cancer Institute, and the National Coalition of Cancer Survivors, is imperative. The PNP/O in specialty practice plays a role in educating the professional community about survivorship in many ways. Corresponding with local physicians improves the continuity of care and ensures the consistency of information given to the family. Lecturing at professional meetings, interacting in cooperative study groups, and pub1 ish ing articles about important approaches to care continue to be effective ways to disseminate information about survivors. In sum, the PNP/O is a versatile source of information related to actual and potential late effects of childhood cancer for survivors and their families, educational and health care professionals, and the community-at-large. Clinical/Program
Manager of Nurse-Run Clinics
Follow-up clinics for long-term survivors have predominantly been nurse-run clinics to date. In one such clinic at Strong Children’s Medical Center in Rochester, New York, the PNP/O is part of a multi-disciplinary team that includes a pediatric oncologist, radiation oncologist, psychologist, social worker, school liaison, and identified specialty physicians (such as, orthopedist). This team meets routinely to evaluate the physical, physiologic, and psychosocial effects of surviving cancer. However, the PNP/O compiles the pertinent infor-
T
he PNP/O in specialty practice plays a role in educating the professional community about survivorship.
mation and begins to formulate a list of studies that will best evaluate an individual survivor at the time of the yearly visit. This information is compiled in a computerized data bank for easy retrieval in clinical and research use. During the weekly team meetings, the PNP / 0 gen.erally acts as the leader/facilitator, presents each survivor’s history, and validates the appropriate evaluations with the other team members. The PNP/O completes a patient history and a complete physical examination on the day of the visit. The pediatric oncologist and radiation oncologist meet with the survivor and family
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and discuss any questions related to their areas of expertise. After the visit, the PNP / 0 completes all followup tests, makes all referrals, and obtains all family feedback. In essence, the PNP/O has overall responsibility for clinical effectiveness in collaboration with the oncology medical director. Nurses have taken on more leadership in outpatient clinics, and case management has become a role component of the PNP/O. Case management or care coordination has been described as “assessment, risk appraisal, care planning and team conferencing, service referral and procurement, monitoring and tracking, and reassessment” (Weiss, 1987, p. 275). The case manager assures continuity of high quality care over a broad spectrum of services, from prevention to tertiary care, by being a primary resource person to help the patient and family navigate complex health systems (Faherty, 1990). The PNP/O must provide clinical case management for each survivor and family by coordinating services among the multiple disciplines, monitoring actual and potential late effects. Program case management can be conceptualized as providing care to groups and populations with similar needs. The PNP/O has the opportunity to synthesize the unmet needs of this population of survivors through a triangulation of methods (Goeppinger & Shuster, 1992; Kimchi, Polivka, & Stevenson, 1991). Use of a triangulation of methods for a population of survivors could be (a) interviewing or surveying the survivors and their families in the clinic setting as consumers of services, (b) collating information from key informants (members of the multi-disciplinary team or colleagues specializing in survivor care), and (c) integrating current literature related to actual and potential late effects. This use of multiple, complementary methods prevents bias in program development and production of unmarketable services. Program case management, when it focuses on the special unmet needs of the survivor population, provides the basis for strategic program planning in collaboration with the program medical director and other team members. As program money becomes tighter, the PNP/O will need to base program development on a wellgrounded needs assessment and on proven marketing strategies to obtain needed funding. An example of a needs assessment recently completed with parents of children with brain tumors at the University of Rochester, Strong Children’s Medical Center in Rochester, New York, revealed little in the literature, yet parents perceived their needs as unique from parents of other survivors with other diagnoses (Cable & Maurais, 1991). Some of the recommendations of the needs assessment were a day-long conference for parents, a parents’ support group, extension of the educational liaison’s role, increased linkage between radiology/oncol-
ogy and hematology/oncology for better continuity of care, and the development of local policy. Thus, the PNP/O is also responsible for the growth of programs and services for survivors and their families. Activities that promote a comprehensive program for survivors are necessary for effective program management by the PNP/O. Eliminating those aspects of the program that are obsolete and creating new ones based on documented needs keeps the program viable. Approaching local foundations or cancer organizations, if necessary, to obtain external funds to expand the program may be a future role for the PNP/O. Such tasks may seem monumental, but resources are generally available. The PNP/O also develops effective data information systems. Change may need to come slowly in some organizations, but providers aware of information management recognize that outdated information systems take up precious time and are not cost effective. Ethically, the PNP/O creates a standard of care for the aggregate of survivors through the role of program case management, resulting in comprehensive and quality services for the clinic population. Using this standard within the role of clinical case manager, the advanced practitioner determines what services the survivor and family should receive. The implications of nurse-run clinics are many. For survivors and their families, these clinics offer easy access to a specialty care provider and thus increase the likelihood of continuity of care. For hospital administrators, nurse-run clinics offer the opportunity to provide innovative care to high-risk individuals and to groups with
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urses have taken on more leadership in outpatient clinics, and case management has become a role component of the PNP/O.
common needs, thus enhancing services and marketability while reducing costs. Nurse-run clinics also offer the PNP/O autonomy and the opportunity to extend the limits of the nursing profession. Researcher
In the Hobbie (1986) description of the PNP/O role, the function of researcher was oriented toward data collection and management of clinical information for a given study with some involvement in research planning and data synthesis toward protocols for follow-up care. This component of the PNP/O role has evolved to become more collaborative. Masters-prepared nurses have claimed a significant role as clinical experts with survivors and need to consider working with doctorally prepared nurses or physicians on research projects. The desire, much less the expectation, to conduct clinical research as a principal investigator may not be realistic
Journal of Pediatric Health Care
for clinicians providing holistic care to a high-risk population. However, the union between the specialty care provider and a doctorally prepared nurse or physician provides an excellent way to conduct research as a coinvestigator or research associate. Several collaborative studies are currently underway in the follow-up clinic at the University of Rochester, Strong Children’s Medical Center in Rochester, New York. Hollen and Hobbie are conducting a study involving the reduction of risk behaviors for cancer-surviving adolescents. In addition, several physiologic studies to evaluate long-term effects are being conducted at the same time. Combining the expertise of a clinical expert with a research expert strengthens the possibility of obtaining highly competitive funding and successfully meeting research aims.
A
ctivities that promote a comprehensive program for survivors are necessary for effective program management by the PNP/O. Because the PNP/O is the case manager who knows the needs of the clinic population of survivors, the PNP/O is best able to (a) assist in/or determine research questions or hypotheses, (b) monitor access to the survivors so that they are not deluged by researchers, (c) coordinate the clinical studies conducted with this population at a given site to minimize time demands on both survivors and researchers, and (d) ensure that protocols do not interfere with one another, thus protecting the researchers’ outcomes. This comprehensive review of all studies for this aggregate is different from the intensive individual study review by a human subjects review board. The PNP/O needs to weigh the importance of a research study, family time expended, invasion of privacy or dignity, and interruption of staff time and its impact on clinic flow. Consultant Archer, Kelly, and Bisch (1984) described the consultant as an expert in a particular field, with either specific knowledge or skills, who uses a collaborative helping process in planned change or evaluation. Consultation with another professional regarding an individual case should not be confused with consultancy, focusing on role, educational, or management issues of a larger scale (Reed, Greer, McKay, & Knight, 1990). The consultant function for the PNP/O has become more important over the last few years as more institutions recognize the importance of systematic evaluation in establishing clinics tailored to the specific needs of a population, In addition, community organizations often seek help in program planning for high-risk populations.
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The PNP / 0 promotes a better understanding of survivorship by participating in community organizations and by professional networking. As the PNP/O keeps current in this specialized field, accumulates clinical experience, and participates in research, the role of consultant becomes a reality on the local level, and gradually more distant sites and larger projects become possible. The formal role of clinical/program consultant is at times difficult for the PNP / 0 because of a lack of formal education and few role models within nursing. Informal networking in person and by telephone is recommended when working to establish oneself as an expert. Information-seeking phone calls often lead to guest lectures and requests to assist institutions and agencies in special projects. Nurses have traditionally shared their knowledge and experience without acknowledgment or remuneration, but for the information and time to be valued, an external institution must be charged. An appropriate consultation fee can be determined by assessing the current rate charged by colleagues performing similar services. n
CONCLUSION
The role of the PNP/O has been evolving since the late 1970s to meet the demands of an increasing cancersurviving population with special needs related to actual and potential late effects. Essentially, the central focus for the PNP/O is the survivor and family, which is extended to the clinic population and related groups. Any role on behalf of this clinical population should be assumed as necessary to provide comprehensive care. Nurse-run clinics provide the opportune setting for the PNP/O to blend the role functions of the PNP and the CNS in an advanced practice role as the direction for care in the coming decades. Long-term survivors of childhood cancer are a unique population with high-risk needs. Because significant financial and emotional support is given to survivors during cancer treatment, protecting this investment is imperative, not only from an economic perspective but from a humanistic perspective as well. Providing specialized care through the role of the PNP/O has direct implications for the quality of life for survivors and their families and for health care costs. With the number of childhood cancer survivors increasing, providing health promotional care, tailored to the specific needs of survivors, will be crucial in the future. Moreover, this model for specialization can be applied to other high-risk populations that require systematic evaluation for effective care. n REFERENCES Archer, S. E., Kelly, C. D., & Bisch, S. A. (1984). Inzplementing change in wmmunities: A wL!ubarative pocess. (pp. 68-87). St. Louis: C. V. Mosby. Bidwell-Cerone,S. R. (1991). Preparing for the advanced practice
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role of the future: A curriculum to hybridize clinical nurse specialists and nurse practitioners. University of Rochester, School of Nursing, Rochester, New York. Unpublished manuscript. Bleyer, W. A. (1990). The impact of childhood cancer on the United States and the world. CA-A Cancer Journalfor Clinicians, 40, 355367. Cable, G., & Maurais, J. (1991). Needs assessment for parents of children with brain tumors. University of Rochester, School of Nursing, Rochester, New York. Unpublished manuscript. Chesler, M. A., & Barbarin, 0. A. (1987). Childhwd canner and the family: Meeting the challenge ofstress and support. New York: Brun ner/Mazel. Faherty, B. (1990). Case management, the latest buzzword: What it is, and what it isn’t. Caring, 9, 20-22. Gleeson, R. M., Mcilvain-Simpson, G., Boos, M. L., Sweet, E., Trzcinski, K. M., Solberg, C. A., & Doughty, R. A. (1990). Advanced practice nursing: A model of collaborative care. Amertin Journal ofMaternal Child Nursing, 15, 9-10, 12. Goeppinger, J., & Shuster, G. F. (1992). Gxnrnunity as client: Using the nursing process to promote health. In M. Stanhope, & J. Lancaster, Cummunity health nursing: Process and pm&e for pmmotiwhealth (3rded.), (pp. 253-276). St. Louis: C. V. Mosby. Hobbie, W. L. (1986). The role of the pediatric oncology nurse specialist in a follow-up clinic for long-term survivors of childhood cancer. Journal of the Associh~n of Pediatric Oncolgy ,Nurses, 3, 912, 24. Hobbie, W. L. Ruccione, K., Moore, I., & Truesdell, S. (in press). Long-term survivors. In G. V. Foley, D. Fochtman, & K. Mooney (Eds.), Nursing care ofthe child titb cuncer (2nd ed). Philadelphia: W. B. Saunders. Hopson, B., &Adams, J. (1976). Towards an understanding of transition: Defining some boundaries of transition dynamics. In J. Adams, J. Hayes, & B. Hopson, Tram&m: Understanding and mn&nfl persmral change (pp. 3-25). Montclair, NJ: Allanheld, Osmun Universe Books.
The JOURNAL is abstracted
and/or
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Kimchi, J., I’olivka, B., & Stevenson, J. S. (1991). Triangulation: Operational definitions. Nursiw Research, 40, 364-366. Kinsman, H. J. (1983). The CNS and the nurse practitioner. In A. B. Hamric & J. Spross (Eds.), The clinical nune specklist in tbeq andpractice (pp. 275290). New York: Grune & Stratton. K&man, H. J. (1989). The CNS and the nurse practitioner. In A. B. Hamric & J. Spross (Eds.), The clinical nurse specialist in tbemy andpractice (2nd ed.), (pp. 381-394). Philadelphia: W. B. Saunders. Koocher, G. I’., & O’Malley, J. E. (1981). The damocles syndrome: Psychosociul consequences of surviving childhood cancer. New York: McGraw-Hill. Meadows, A. T., & Hobbie, W. L. (1986). The medical consequences of cure. Cancer, 58(suppl), 524528. Morris-Jones, P. H., & Craft, A. W. (1990). Childhood cancer: Cure at what cost? Archives of Dhease in Childhood, 65, 638-640. Peckham, V. C., Meadows, A. T., Bartel, N., & Marrero, 0. (1988). Educational late effects in long-term survivors of childhood acute lymphocytic leukemia. Pediatriu, 81, 127-133. Reed, C., Greer, A., McKay, C., & Knight, C. (1990). Process issues in consultancy. Journal ofAdolescence, 13, 387-400. Ruccione, K., & Hobbie, W. L. (1989). Taking care ofyourselffw life. (Available from W. L. Hobbie, University of Rochester, School of Nursing, Rochester, New York). Selby, M. L., &Tuttle, D. M. (1987). Community health assessment and program planning in the nurse practitioner curriculum: Evaluation of a guided design learning module. Public Health Nursing, 4, 160-165. Wasserman, A. L., Thompson, E. I., Wilimas, J. A., & Fairclough, D. L. (1987). The psychological status of survivors of childhood/adolescent Hodgkin’s disease. American Journal of Diceares of Children, 141, 626-631. Weiss, L. J. (1987). Care coordination: An integration mechanism. In C. J. Evashwick & L. J. Weiss (Eds.), ManaBing the continuum of care, (pp. 271-291). Rockville, MD: Aspen.
Index, the Cumulative
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&AUiedHealth
Liter&m,
and MEDLINE.
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