Pediatric Hematology Nursing: Scope and Standards of Practice

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1 Pediatric Hematology Nursing: Scope and Standards of Practice

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3 Pediatric Hematology Nursing: Scope and Standards of Practice July 2009

4 Copyright 2009 Association of Pediatric Hematology/Oncology Nurses 4700 W. Lake Avenue Glenview, IL / Fax 877/ All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without written permission from the copyright holder.

5 ACKNOWLEDGMENTS Author Jane Hennessy, MPH RN CNP CPON Children s Hospital & Clinics Minneapolis, MN Reviewers Karyn J. Brundige, MSN RN CPNP ARNP Seattle Children s Hospital Seattle, WA Christine J. Guelcher, MS PNP-BC Children s National Medical Center Washington, DC iii

6 CONTENTS Acknowledgments...iii Scope of Pediatric Hematology Nursing Practice... 1 Description of Pediatric Hematology Nursing... 1 Pediatric Hematology Nurse... 1 Pediatric Hematology Advanced Practice Registered Nurse... 1 Standards of Pediatric Hematology Nursing Practice Role of Standards... 2 Standards of Practice... 2 Standards of Professional Performance... 2 Standards of Practice: Pediatric Hematology Nurse Standard 1. Assessment... 3 Standard 2. Diagnosis... 6 Standard 3. Outcomes Identification... 6 Standard 4. Planning... 9 Standard 5. Implementation Standard 5a. Coordination of Care Standard 5b. Health Teaching and Health Promotion Standard 6. Evaluation Standards of Professional Performance: Pediatric Hematology Nurse Standard 7. Quality of Practice Standard 8. Education Standard 9. Professional Practice Evaluation Standard 10. Collegiality Standard 11. Collaboration Standard 12. Ethics Standard 13. Research Standard 14. Resource Utilization Standard 15. Leadership Standards of Practice: Pediatric Hematology Advanced Practice Registered Nurse Standard 1. Assessment Standard 2. Diagnosis Standard 3. Outcomes Identification iv

7 Standard 4. Planning Standard 5. Implementation Standard 5a. Coordination of Care Standard 5b Health Teaching and Health Promotion Standard 5c. Consultation Standard 5d. Prescriptive Authority and Treatment Standard 5e. Referral Standard 6. Evaluation Standards of Professional Performance: Pediatric Hematology Advanced Practice Registered Nurse Standard 7. Quality of Practice Standard 8. Education Standard 9. Professional Practice Evaluation Standard 10. Collegiality Standard 11. Collaboration Standard 12. Ethics Standard 13. Research Standard 14. Resource Utilization Standard 15. Leadership References Bibliography v

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9 SCOPE OF PEDIATRIC HEMATOLOGY NURSING PRACTICE Description of Pediatric Hematology Nursing Pediatric hematology nurses specialize in the care of children, adolescents, and young adults with acute and chronic disorders of the blood and blood-forming organs. This includes the care of children with acute and chronic conditions. In many hospitals and clinics, nurses who care for children with hematologic issues also care for children diagnosed with cancer. In 2006, the membership of the Association of Pediatric Oncology Nurses (APON) voted to change the name to the Association of Pediatric Hematology/Oncology Nurses (APHON) to recognize this fact. Pediatric hematology nursing blends the general skills needed to care for pediatric patients and the skills needed to care for patients with acute and chronic complications related to hematologic conditions. Nurses care for these children in inpatient settings, clinics, schools, and comprehensive care centers. The pediatric hematology nurse cares for patients across the age continuum, starting from birth in the cases of hemoglobinopathies and hemophilia until the child is transitioned into adult care. Pediatric Hematology Nurse The pediatric hematology nurse is a licensed registered nurse (RN) who demonstrates clinical knowledge and skill in the specialty of pediatric hematology nursing. Educational preparation for an RN may be an associate degree (AD) or Bach elor of Science in Nursing degree (BSN). Although specialty certification for pediatric hematology nursing is not currently available, in 2010, the Oncology Nursing Certification Corporation (ONCC) will offer the Certified Pediatric Hematology/ Oncology Nurse (CPHON) examination. This new certification examination will encompass both pediatric oncology and hematology. Pediatric Hematology Advanced Practice Registered Nurse The pediatric hematology advanced practice registered nurse (APRN) is an RN prepared with a minimum of a master s degree, with advanced education and training in pediatric hematology nursing. The pediatric hematology APRN must demonstrate competency in all standards of basic pediatric hematology practice in addition to the standards for the APRN. The pediatric hematology APRN may function as a clinical nurse specialist, nurse practitioner, nurse researcher, or in a blended role in compliance with state and federal laws and regulations. The inclusive APRN title emerged in response to the need for uniform titles within the nursing profession, and APHON recognizes this uniform title in documents and publications except when specific role functions are being described. Practice components of the pediatric hematology APRN professional role depend on activities applicable to the nurse s education level, employment position, and practice setting. The pediatric hematology APRN possesses self-direction in the development and maintenance of competency in practice and enhancement of career goals. This should include membership and participation in professional organizations, such as APHON, the International Association of Sickle Cell Nurses and Physician Assistants, the National Hemophilia Foundation, and other relevant professional organizations. 1

10 STANDARDS OF PEDIATRIC HEMATOLOGY NURSING PRACTICE Role of Standards Standards of practice and professional performance describe the roles and responsibilities of the pediatric hematology nurse. The standards of practice may be applied in all settings and across the continuum of care, including physical care, growth and development, psychosocial care, education, palliative care, long-term survival, transition into adult care, and wellness strategies. Standards of Practice Standards of practice pertain to professional nursing functions performed by the nurse throughout the nursing process, including assessment, diagnosis, outcomes identification, planning, implementation of interventions, and evaluation. Standards of Professional Performance Standards of professional performance reflect the expectations for professional behavior, including activities related to quality of practice, education, professional practice evaluation, collegiality, collaboration, ethics, research, resource utilization, and leadership. The standards of practice and professional performance may be used as a resource for a variety of purposes, including educating consumers about the practice of pediatric hematology nursing, providing additional guidelines for regulatory and other legal agencies, developing job descriptions and evaluating job performance, providing consistency in the care of children and adolescents with hematologic disorders, and providing a reference of nursing practice standards for pediatric hematology nurses. 2

11 STANDARDS OF PRACTICE: PEDIATRIC HEMATOLOGY NURSE Standard 1. Assessment The pediatric hematology nurse collects and documents data regarding the child and family. Assessment of the child s physical and psychosocial needs leads to the development of an appropriate plan of care for the child and family. The pediatric hematology nurse A. Collects data in a systematic and ongoing process that is pertinent to the needs of the child and family B. Involves the child, family, and other healthcare providers as appropriate in holistic data collection C. Considers family resources in assessment of child s environment, including physical environment (home and school) for safety issues, psychosocial environment that includes family dynamics and culture, and financial and medical coverage resources D. Collects data using appropriate evidence-based assessment techniques and instruments E. Collects data in the following areas as appropriate through assessment of 1. Physical care a) Symptoms and subsequent distress caused by the disorder and its treatments b) Physical status of vital functions by assessing vital signs, laboratory data, general appearance, nutrition, and behavior c) Parents comfort level with assisting or providing physical care for the child d) Knowledge of common childhood illnesses and their management in the child with a hematologic disorder e) Knowledge of well-child health maintenance issues that may be differ ent in the child with a hematologic disorder f) Methods of managing the symptoms of pain, bleeding or clotting, or other related symptoms, including the use of complementary and alternative therapies g) Alterations in protective mechanisms, neurologic function, mobility, elimination, ventilation, circulation, or comfort h) Alterations in body temperature and assessment of signs and symptoms of sepsis i) Management of central venous access devices 3

12 2. Growth and development a) Current stage of growth and development by using assessment tools, developmental milestones, growth chart, and child and parent history b) Level of interaction between child and parent(s) c) Impact of disorder and treatment on the child s developmental level and tasks d) Child s level of physical performance e) Child s level of success in interpersonal relationships f) Child and family s coping strategies and level of adjustment g) Parents ability to allow child to have independence appropriate to developmental level h) Effects of body image changes on the child s developing self-concept i) Impact of disorder and treatment on school attendance, academic achievement, and peer interaction 3. Psychosocial care At time of diagnosis and ongoing throughout development a) Structure and roles of family, family interactions, lifestyle, and commu nication styles b) Educational, occupational, or life experiences that impact perception and understanding of hematologic diagnosis c) Past experience with diagnosis in the case of genetically inherited disorders (hemophilia, etc.) and possible impact on understanding and coping d) Culture and spiritual traditions e) Psychosocial distress in response to diagnosis f) Effectiveness of support systems available to family g) Coping strategies utilized by the family in the past h) Factors that place family at high risk for difficulty in coping i) Need for referral to financial resources or information During treatment/ongoing care a) Family adjustment to caring for the child with a hematologic diagnosis across settings and adaptation to burden of care b) Impact on family dynamics (marriage, employment, finances) c) Family and child s adaptation to school within the context of a hematologic diagnosis d) Sibling adaptation to necessary lifestyle changes related to hematologic diagnosis e) Family s ability to follow medical treatment plan 4

13 At end of treatment or at transition a) Response to end of therapy and change in frequency of clinic visits b) Adjustment to new location and staff for ongoing management of chronic disorder (transition to adult care) c) Child and family s anxiety about ongoing care as an adult d) Issues related to employment opportunities or limitations and impact on insurance e) Reintegration to life without ongoing treatment f) Fear and anxiety about completion of treatment g) Potential psychosocial long-term effects of hematologic disorder h) If the disorder is genetic, psychosocial effects on long-term planning 4. Education a) Developmental and cognitive level of the child b) Child and family s knowledge of the diagnostic tests, diagnosis, prognosis, treatment, side effects, symptom management, and care at home c) Family s readiness to learn and preferred method of learning d) Formal and informal education and literacy level e) Availability of resources for non-english-speaking families f) Availability of community, clinic, and home resources to continue the teaching process 5. Chronic care a) Child and family s understanding of a chronic illness b) Ability to obtain and maintain insurance c) Child s level of comfort d) Multidisciplinary interventions that alleviate, or reduce to the best extent possible, distressing symptoms (e.g., pain) and promote comfort e) Support systems in the family and community f) Cultural and spiritual traditions to support the child and family dealing with the impact of a chronic illness on the child and family s life g) Ability of family to provide care to the child in the home or other setting h) Impact of prognosis on the siblings i) Understanding of child and family s decisions regarding medical options for the care of the child 6. Long-term survival and transition into adult care If treatment completed, response to therapy and understanding of follow-up plan; if transitioning into adult care, understanding of where to seek care and when 5

14 7. Prevention and early detection of disorder or treatment side effects a) Identification of risk factors related to hematologic disorder or treatment side effects b) Knowledge of warning signs and symptoms of treatment or disorder side effects c) Understanding of healthy lifestyle behaviors, especially regarding diet, exercise, and appropriate medical follow-up F. Synthesizes available data, information, and knowledge relevant to the situation to identify patterns and variances G. Documents assessment data in the medical record. Standard 2. Diagnosis The pediatric hematology nurse uses assessment data from nursing and other disciplines to determine diagnoses. Diagnoses help the pediatric hematology nurse identify problems and subsequently determine the appropriate interventions, including expected outcomes, plan, and evaluation. The pediatric hematology nurse A. Determines actual or potential diagnoses from assessment data B. Develops diagnoses that are developmentally and age appropriate as well as culturally relevant C. Ensures that the diagnoses address physical care, growth and development, psychosocial care, palliative care, long-term survival, and prevention and early detection as appropriate D. Communicates with the child, family, and other members of the healthcare team to validate and prioritize the diagnoses E. Documents the diagnoses in the child s medical record to facilitate the determination of expected outcomes and plan of care. Standard 3. Outcomes Identification The pediatric hematology nurse identifies expected outcomes specific to the child and family. The identification of expected outcomes allows the pediatric hematology nurse to work with the child and family to meet the mutual goals of care. Expected outcomes include adequate education, optimal growth and development, optimal physical and emotional health, minimal symptom distress, and prevention of treatment symptoms or disorder side effects. 6

15 The pediatric hematology nurse A. Derives expected outcomes from diagnoses B. Designs outcomes that are mutually formulated with the child, family, and other healthcare team members as appropriate C. Ensures that outcomes are developmentally and age appropriate as well as culturally relevant D. Designs time-specific, realistic, and measurable outcomes E. Formulates outcomes that are congruent with the existing treatment plan F. Develops outcomes in the following areas as appropriate, but not limited to 1. Physical care The child and family a) Demonstrate proficiency in performing necessary physical and emotional care, including teaching and promoting self-care behaviors b) Communicate appropriate interventions for common childhood illnesses c) Verbalize understanding of well-child health maintenance, including what may be different for a child with hematologic diagnosis d) Identify appropriate methods for management of distressing symptoms e) Describe appropriate interventions for real or potential alterations in protective mechanisms, mobility, elimination, neurologic function, ventilation, circulation, or comfort 2. Growth and development The child a) Demonstrates mastery and overcomes fears related to disorder and treatment b) Demonstrates independence appropriate to developmental level c) Participates in daily care and engages in self-care as appropriate to developmental level d) Maintains normalcy in life as much as possible through parental involvement; structure and flexibility from caregivers; continued relationships with peers; and school- and age-appropriate play, social activities, and physical activities e) Maintains growth patterns as plotted on the growth chart f) Demonstrates mastery of language, social, and motor skills appropriate to developmental level 7

16 The family a) Maintains discipline and consistency in approach to parenting and continues to have appropriate expectations of child b) Demonstrates ability to manage issues related to siblings c) Establishes a routine appropriate to child s developmental level d) Supports child s autonomy in learning about disorder and treatment e) Verbalizes understanding of the diagnosis impact on child s growth and development, and assesses success of interventions to manage delays 3. Psychosocial care At time of diagnosis, the family a) Identifies and expresses emotions, distress, and needs consistent with cultural background b) Describes plan of care for child while hospitalized and at home c) Demonstrates adequate coping skills for dealing with life-altering event d) Develops plan for addressing financial issues e) Explains diagnosis and treatment to the child and siblings as appropriate f) Demonstrates ability to participate in care During treatment and care, the family a) Verbalizes acceptance of diagnosis b) Verbalizes understanding of genetic component (if applicable) of the disorder c) Verbalizes understanding of treatment plan and demonstrates compliance d) Utilizes available support systems (extended family, friends, spiritual and cultural community) e) Establishes new normal regarding family routines and lifestyle f) Demonstrates ability to provide emotional support to child g) Demonstrates ability to provide support to siblings through inclusion in treatment routines and by spending individual time with each child At end of treatment or at transition to adult care, the family a) Identifies and verbalizes feelings about completing therapy or moving into adult care b) Works to foster independence appropriate to child s developmental level c) Adapts to treatment discontinuation or the transition to adult care by asking questions and verbalizing concerns d) Recognizes child s unique needs for follow-up care 8

17 4. Education The child and family a) Verbalize understanding of disorder, treatment options, and potential side effects related to treatment or disorder b) Demonstrate understanding of treatment by complying with recommended home-care practices c) Share in the ongoing decision-making process as developmentally and culturally appropriate d) Identify resources for continued learning and support 5. Transition into adult care The child and family a) Describe received and ongoing treatment b) Understand impact of disorder on insurance and insurability c) Understand impact of disorder on employability and limitations on job options d) Describe actual and potential effects of disorder or treatment e) Verbalize understanding of follow-up for prevention, monitoring, and early treatment of real or potential effects related to disorder or treatment f) Utilize community, academic, and medical resources to achieve maximum quality of life g) Verbalize understanding of genetic component of the hematologic disorder and meaning for their lives 6. Prevention and wellness The child and family a) Describe healthy lifestyle behaviors that will decrease chances of developing other illnesses or exacerbate side effects of the hematologic disorder or its treatment b) Describe warning signs that could indicate health compromise c) Identify risk factors for the development of effects from the disorder or treatment. Standard 4. Planning The pediatric hematology nurse develops an individualized plan that prescribes interventions to attain expected outcomes. A comprehensive and individualized care plan guides the healthcare team to implement interventions that facilitate the achievement of expected outcomes. 9

18 The pediatric hematology nurse A. Bases the plan of care on current knowledge of pediatric and hematology nursing care B. Considers the age and cognitive ability of the child when formulating the plan of care C. Partners with the child and family in the development of the plan of care D. Considers the social, financial, spiritual, and cultural aspects of the family E. Includes physical and psychosocial interventions F. Integrates current best practices and research affecting care in the planning process G. Includes a plan for education of the child and family H. Creates a plan that provides for continuity of care I. Collaborates to develop and establish priorities for the plan of care with healthcare team members J. Documents the plan of care in the medical record. Standard 5. Implementation The pediatric hematology nurse implements the plan of care to achieve the expected outcomes for the child and family. The implementation of the plan of care is designed to prevent or treat healthcare problems associated with the diagnosis of a hematologic disorder or its treatment. The overall goal is to improve the child s health status, promote quality of life, and facilitate optimal family functioning. The pediatric hematology nurse A. Collaborates with other members of the healthcare team to implement interventions outlined in the plan of care B. Participates in clinical trials by understanding and following the protocol for each patient and by explaining the rationale and schedule to the family C. Utilizes evidence-based interventions and treatments specific to the diagnosis or problem D. Identifies resources necessary and available to implement the plan of care E. Ensures that the interventions are safe, timely, and implemented in a caring manner F. Ensures that interventions are developmentally appropriate 10

19 G. Adjusts interventions to meet the needs of the child and family H. Partners with the child and family in the implementation process I. Documents interventions in the medical record. Standard 5a. Coordination of Care The pediatric hematology nurse coordinates delivery of care to support transition across the care continuum. The child with a hematologic disorder is cared for in a variety of settings, which necessitates communication and coordination among settings to provide quality care. The pediatric hematology nurse A. Coordinates safe delivery of care within and across healthcare settings B. Documents coordination of care in the medical record. Standard 5b. Health Teaching and Health Promotion The pediatric hematology nurse employs strategies to educate families about maintaining health and providing a safe environment of care. The pediatric hematology nurse is in a unique position to provide daily education to promote, maintain, restore, and improve the health and comfort of the child with a hematologic disorder. The pediatric hematology nurse A. Provides health teaching and anticipatory guidance about the disorder (including symptoms and side effects), disorder management in both the healthcare and home setting, and the promotion of the child s developmental process B. Uses teaching methods appropriate to the situation, child s developmental level, learning needs, language preference, and culture C. Encourages feedback and evaluation of the effectiveness of teaching strategies. Standard 6. Evaluation The pediatric hematology nurse evaluates the child and family s progress toward attainment of the expected outcomes. The plan of care and the impact of the interventions are continually evaluated and subsequently changed to meet the needs of the child and family to attain expected outcomes. 11

20 The pediatric hematology nurse A. Collects data pertaining to the child and family s response to interventions B. Partners with the child, family, and other members of the healthcare team in the evaluation process when appropriate C. Utilizes an evaluation process that is systematic, ongoing, and criteria-based D. Compares actual findings to expected outcomes E. Reviews and revises diagnoses, expected outcomes, and plan of care based on the data collected and the consensus of the healthcare team F. Documents the findings of the evaluation process and the revised plan of care in the medical record. 12

21 STANDARDS OF PROFESSIONAL PERFORMANCE: PEDIATRIC HEMATOLOGY NURSE Standard 7. Quality of Practice The pediatric hematology nurse participates in activities that improve the quality, safety, and effectiveness of nursing care in all care settings. The pediatric hematology nurse delivers expert, scientifically-based, safe care in a healthcare environment that is continually changing as a result of technological and scientific advances in basic and behavioral sciences and information systems. New information must be integrated into current practice and continually evaluated. The pediatric hematology nurse A. Participates in quality assessment and improvement activities as appropriate to the nurse s education and position, which may include 1. Identifying safety issues in patient care and care delivery systems 2. Identifying, collecting, and analyzing data to measure and monitor the effectiveness and outcomes of care 3. Integrating results of quality assessment and improvement activities into practice 4. Developing policies and procedures that measure compliance and improve quality of care B. Works to improve safe, quality care and advances nursing practice throughout the work setting and the community C. Contributes to systematic knowledge development and research related to child and family s response to care D. Integrates results of scientific inquiry, quality assessment, and improvement activities into all areas of nursing practice as appropriate and incorporates new knowledge to improve nursing practice, care delivery systems, and patientcare outcomes. Standard 8. Education The pediatric hematology nurse demonstrates competency in pediatric hematology nursing practice and maintains current knowledge gained from publications, research findings, and professional activities. The rapid expansion of knowledge pertaining to basic and behavioral sciences, technology, and information systems requires an ongoing commitment to scientific inquiry and learning. 13

22 The pediatric hematology nurse A. Demonstrates commitment to lifelong learning by participating in ongoing educational activities (formal or independent) to expand knowledge, enhance role performance, and increase knowledge of professional issues B. Seeks opportunities to obtain knowledge and experiences necessary to develop and maintain clinical skills that reflect current practice C. Seeks to obtain certification (per eligibility criteria) in order to demonstrate continued professional development that reflects the nurse s practice and experience in, and current knowledge of, pediatric care of the child with a hematologic disorder D. Maintains and updates knowledge of political, cultural, spiritual, social, healthcare, and ethical issues related to hematology care and practice setting E. Acknowledges and utilizes colleagues as resources and pursues diverse avenues to enhance knowledge and performance F. Maintains professional records to provide evidence of learning. Standard 9. Professional Practice Evaluation The pediatric hematology nurse evaluates own nursing practice in relation to professional practice standards, relevant statutes, and regulations. The pediatric hematology nurse delivers expert, scientifically-based care to children and families in accordance with nursing practice standards established by APHON and the nursing profession. Performance appraisal includes self-evaluation and input from peers in accordance with current professional nursing standards. The pediatric hematology nurse A. Demonstrates competency in areas relevant to the practice of pediatric hematology nursing B. Demonstrates knowledge of current professional practice standards, laws, and regulations C. Contributes to systematic knowledge development and research by integrating scientific inquiry into areas of practice and decision making D. Engages in regular performance appraisal of own clinical practice and role performance, and identifies areas of strength and areas requiring further development E. Demonstrates understanding of a therapeutic nurse-patient relationship and seeks regular, constructive feedback regarding individual practice and role performance 14

23 F. Participates in peer performance appraisal activities as appropriate G. Participates in medical error reporting. Standard 10. Collegiality The pediatric hematology nurse interacts with and contributes to the professional development of peers, colleagues, and others. The pediatric hematology nurse provides leadership in the professional development of other nurses and healthcare professionals, demonstrates awareness of learning needs, and supports professional development by acting as a preceptor or mentor. The pediatric hematology nurse A. Works collaboratively and functions as an effective member of the healthcare team by promoting an environment conducive to collaboration, contribution, and professional communication B. Facilitates professional growth of self and others by acting as a preceptor or mentor for new staff and students C. Assists colleagues and students in the development of therapeutic relationships with children and families D. Participates in peer performance appraisal that is constructive and reflective of hematology nursing practice and professional development E. Collaborates with colleagues in conducting research, preparing reports, publications, and presentations as appropriate F. Provides leadership that improves the quality of care and advances nursing practice throughout the work setting and the community G. Promotes peer and public awareness of the scope of current hematology nursing practice H. Contributes to an environment conducive to clinical education of nursing students and other healthcare professionals as appropriate I. Recognizes and respects colleagues and their contributions. Standard 11. Collaboration The pediatric hematology nurse collaborates with children, families, and multidisciplinary team members in providing care. The complexity and intensity of hematology care requires coordinated and ongoing interaction between the child and family, and the multidisciplinary team. Through the collaborative process, healthcare providers use their diverse abilities to assess, plan, implement, and evaluate care. 15

24 The pediatric hematology nurse A. Establishes rapport and supportive ongoing relationships with the child, the family, and other healthcare providers B. Educates the child s school and community about hematologic disorders and their impact on patients and families C. Collaborates with the child, family, and other healthcare providers in the formulation of goals and the plan of care through communication and documentation D. Identifies appropriate community resources to promote continuity of care and collaborates with managed care or insurance companies for home care E. Makes referrals as appropriate F. Develops relationships with colleagues to promote change and generate positive outcomes in planning and evaluating care G. Fosters and promotes an environment that facilitates professional communication and collaboration between self and colleagues. Standard 12. Ethics The pediatric hematology nurse respects the rights of all children and families, and makes decisions and designs interventions that are in agreement with ethical principles. Advances in technology and genetics, along with scarce resources in health care, have created an environment in which ethical issues frequently arise. The pediatric hematology nurse should advocate for the rights of children with hematologic disorder as well as identify and help resolve ethical conflicts. The pediatric hematology nurse A. Understands and applies the basic ethical principles of autonomy (right to self-determination), beneficence (do what is in the best interest of the child), nonmaleficence (do minimal harm), justice, and veracity (truth-telling) B. Examines own beliefs relating to autonomy, rights of a minor, quality of life, death, suffering, truth-telling, equality, and access to care C. Identifies available resources, including the Code of Ethics for Nurses with Interpretive Statements (ANA, 2001), when formulating ethical decisions D. Maintains confidentiality E. Provides quality care to all children regardless of race, culture, educational background, spiritual beliefs, socioeconomic status, or the ability to pay F. Delivers care in a manner that preserves and protects child s autonomy, dignity, and rights 16

25 G. Acts as a patient advocate and assists children and families in developing skills so they can advocate for themselves H. Identifies ethical conflicts and seeks to resolve them through multidisciplinary team discussions, including the child and family as appropriate I. Addresses advance directives with young adults 18 years of age and older J. Seeks to include minors in decision-making as appropriate K. Ensures that all children and families receive truthful information regarding diagnoses and treatments L. Participates in the informed consent process by witnessing the signing of consent documents, obtaining ongoing education about research trials, answering the child and family s questions regarding their participation in research, and ensuring the child and family s continued desire to participate in the research trial M. Reports illegal, incompetent, impaired, or unethical practices N. Maintains therapeutic professional nurse-patient relationship with appropriate boundaries. Standard 13. Research The pediatric hematology nurse contributes to nursing through participation, review, and integration of research. Pediatric hematology nurses contribute to systematic knowledge development and research by integrating scientific inquiry into all areas of practice and decisionmaking. Knowledge gained from research, quality assessment and improvement activities, publications, and professional activities is utilized to advance clinical care and nursing practice. The pediatric hematology nurse A. Critiques research for application to practice B. Applies research findings in the development of policies, procedures, and practice guidelines C. Complies with clinical protocol requirements regarding eligibility criteria, treatment regimens, and appropriate specimen and data collection when clinically responsible for children enrolled in research protocols D. Participates as an educator and advocate in the protection of human subjects by ensuring informed consent is obtained prior to instituting treatment or collecting data for a research study E. Participates in research activities as appropriate to the nurse s education and practice setting 17

26 F. Identifies clinical problems suitable for scientific inquiry, research, or quality assessment G. Integrates research findings into practice when applicable. Standard 14. Resource Utilization The pediatric hematology nurse effectively manages the environment of care and considers factors related to safety, effectiveness, and cost when planning and delivering care. The pediatric hematology nurse delivers safe, effective care and utilizes resources efficiently. The nurse s clinical and administrative decisions consider available resources and desired outcomes of care and reflect the ability to prioritize actions and utilize colleagues to achieve desired patient outcomes. The pediatric hematology nurse A. Evaluates factors related to safety, effectiveness, availability, and cost when two or more practice options would result in the same expected outcome B. Incorporates patient choice into management decisions when appropriate C. Discusses benefits and cost of treatment when exploring options with the family and members of the healthcare team as appropriate D. Assists the child and family in securing appropriate services and financial resources to address health-related needs E. Assists the child and family in becoming informed consumers about the costs, risks, and benefits of treatment and care F. Delegates responsibilities for the performance of selected patient-care activities as defined by the state s nurse practice act and according to the knowledge and skills of the caregiver G. Manages the environment of nursing care by identifying resources necessary to achieve desired outcomes H. Makes clinical and management decisions that reflect the ability to prioritize actions and utilize colleagues in achieving desired outcomes I. Makes clinical and management decisions that consider available resources as well as desired outcomes of practice J. Participates in appropriate ongoing evaluation of resource utilization. Standard 15. Leadership The pediatric hematology nurse serves as a leader, role model, and mentor for the professional development of colleagues and students in the local clinical setting. 18

27 The pediatric hematology nurse demonstrates leadership skills to promote nursing care delivered to children and families as well as the profession of pediatric hematology nursing. The pediatric hematology nurse A. Takes a leading role and encourages others to engage in teamwork B. Creates and maintains a healthy work environment by supporting and valuing colleagues C. Directs coordination of care across settings with all members of the multidisciplinary team D. Displays ability to define clear vision, goals, and plan E. Fosters a learning environment proactively by serving as a role model, mentor, or preceptor for nurses in the clinical setting F. Encourages colleagues to succeed G. Accepts mistakes by self and others and works to address changes in practice that help to decrease errors H. Demonstrates creativity and flexibility during times of change I. Exhibits energy, excitement, and passion for quality of care and teamwork J. Serves in leadership roles in the clinical setting, including committees and councils K. Promotes the advancement of pediatric hematology nursing through participation in professional organizations. 19

28 STANDARDS OF PRACTICE: PEDIATRIC HEMATOLOGY ADVANCED PRACTICE REGISTERED NURSE The pediatric hematology advanced practice registered nurse (APRN) must comply with all the standards of practice and professional performance described for the pediatric hematology nurse. In addition, the pediatric hematology APRN must blend the important functions of the hematology and pediatric APRN. These standards describe the competent behaviors of the APRN in pediatric hematology and incorporate key aspects of previously published standards from organizations such as the American Nurses Association (2004) and the Society of Pediatric Nurses (2003). Standard 1. Assessment The pediatric hematology APRN collects data from the child and family using assessment skills to determine the physical, emotional, cultural, and social needs along with the well-being of the child and family. Accurate, holistic assessment of the child and family provides information necessary to formulate the most comprehensive plan of care. The pediatric hematology APRN obtains a comprehensive health history, perform a physical examination, and order and interpret diagnostic tests or procedures, in addition to utilizing assessment data related to the seven key areas (physical care, growth and development, psychosocial care, education, palliative care, long-term survival, and prevention and early detection). Standard 2. Diagnosis The pediatric hematology APRN systematically analyzes the assessment data to identify actual and potential diagnoses. Identification of diagnoses and potential problem areas allows the focus of care to be directed toward appropriate interventions. The pediatric hematology APRN A. Compares clinical findings in the seven key areas with normal and abnormal developmental events and health issues when formulating differential diagnoses B. Uses advanced clinical skills, complex data obtained during history taking, assessment, examination, and diagnostic results in identifying diagnoses C. Utilizes critical thinking in the synthesis of information from multiple sources, such as current nursing and medical literature, conference presentations, and statistics from clinical trials 20

29 D. Assists and mentors staff in developing and maintaining competency in the diagnostic process. Standard 3. Outcomes Identification The pediatric hematology APRN identifies individualized expected outcomes based on the assessment and diagnosis of the child and family in collaboration with the multidisciplinary team when appropriate. The development of expected outcomes focuses nursing care on the specific goals that will help the child and family return to optimal health or experience a peaceful death. The pediatric hematology APRN A. Includes the seven key areas in identifying and defining outcomes B. Incorporates scientific evidence into outcomes that are achievable through implementation of evidence-based practices C. Considers financial and emotional burden to family when establishing desired outcomes and provides optimal care in the most effective and consistent way D. Supports the use of clinical guidelines linked to positive patient outcomes. Standard 4. Planning The pediatric hematology APRN formulates and implements a plan of treatment and interventions, including alternative plans, based on the diagnosis to achieve the desired outcomes. A holistic, prioritized plan of care specifies the interventions necessary for obtaining the desired results for the child and family. The pediatric hematology APRN A. Prescribes interventions and makes recommendations based on advanced clinical knowledge and current research findings B. Designs strategies to meet the multifaceted needs of complex patients, including the seven key areas of pediatric hematology nursing C. Partners with the child, family, and other members of the healthcare team to develop the plan D. Ensures that interventions also focus on and are appropriate for the child and family s values and belief systems. 21

30 Standard 5. Implementation The pediatric hematology APRN utilizes the various components of his or her role (case management, consultation, health promotion, education, prescriptive authority, referral, and research) to implement the plan of care. Implementation of the plan of care should lead to the attainment of the expected outcomes for the child and family. The pediatric hematology APRN A. Utilizes appropriate systems and community resources to implement the plan B. Collaborates with nursing colleagues and other disciplines to implement the plan C. Incorporates new knowledge and strategies for change in nursing practice to meet desired outcomes if necessary. Standard 5a. Coordination of Care The pediatric hematology APRN provides comprehensive clinical coordination of care throughout the relationship with the child and family. Coordination of care for the child and family is cost-effective and provides comprehensive quality of care for the child and family. The pediatric hematology APRN A. Provides leadership in coordination of the child s care along the continuum of health and illness in varied settings, which include the hospital, ambulatory or multidisciplinary clinic, home, and hospice B. Synthesizes data and information obtained from assessment in order to prescribe needed community support measures, including environmental modifications. Standard 5b. Health Teaching and Health Promotion The pediatric hematology APRN promotes and maintains a return to health with minimal complications and late effects of therapy. The pediatric hematology APRN also provides education regarding pediatric and hematology health concerns to children, their families, and the community. The health continuum covers the spectrum of health maintenance from acute or chronic illness to recovery or transition into adult care. The pediatric hematology APRN provides guidance and education throughout the continuum. 22

31 The pediatric hematology APRN A. Assesses the child and family for risk factors related to genetic predisposition to hematologic disorder B. Synthesizes empirical evidence on risk behaviors, learning theory, behavioral change theory, and epidemiology to provide health information and to develop patient education related to early detection and prevention C. Provides education based on the child and family s educational and developmental levels, learning needs, readiness to learn, cultural values, and spiritual beliefs D. Evaluates the accuracy, readability, and clarity of pediatric hematology health resources available on the Internet and elsewhere. Standard 5c. Consultation The pediatric hematology APRN provides consultation to members of the healthcare team, the child and family, and community to influence changes in health care. The pediatric hematology APRN provides consultation for health issues by using experience and knowledge gained from pediatric hematology nursing. This expertise enables the pediatric hematology APRN to offer recommendations for interventions or changes that would improve care for a particular child or for a larger population in general. The pediatric hematology APRN A. Provides information and serves as a resource person for children and families, other healthcare providers, and the community in the areas of children s health and pediatric hematologic disorder; this may include teaching about clinical trial protocols, supportive-care strategies, and transition to adult care B. Provides consultation by synthesizing data, information, theoretical frameworks, and evidence C. Involves the family and those requesting the consultation in the decisionmaking process to facilitate the effectiveness of the consultation D. Communicates recommendations and facilitates understanding to enhance the work of other members of the healthcare team. Standard 5d. Prescriptive Authority and Treatment The pediatric hematology APRN uses prescriptive authority in accordance with institutional, state, and federal regulations in prescribing medications or treatments and in performing procedures essential to the diagnosis and treatment of children with hematologic disorders. 23

32 Advanced practice nursing is regulated by state boards of nursing and by the clinical privileges granted within each (credentialing) institution. The pediatric hematology APRN A. Prescribes specific medications based on knowledge of pharma cology, physiology, and current research findings in hematology care B. Provides information to allow the child and family choices about to treatment options when appropriate C. Prescribes evidence-based treatments, therapies, and procedures specific to the child s comprehensive healthcare needs, clinical status, and diagnostic and laboratory test results D. Informs the child and family about potential side effects and late effects of medications and treatments given, and evaluates such effects E. Provides information about the availability, effectiveness, and cost of alternative therapies F. Competently performs procedures such as bone marrow aspirations, biopsies, lumbar punctures, intrathecal chemotherapy administration, and other procedures as appropriate to the setting and practice privileges for which he or she is credentialed at his or her institution. Standard 5e. Referral The pediatric hematology APRN, in consultation with the primary hematologist as appropriate, makes referrals based on the need for additional resources or consultation by other specialists. Referral should be made for any need that is outside the pediatric hematology APRN s scope of practice or area of expertise. The pediatric hematology APRN A. Recognizes own scope of practice and consults with the primary hematologist as needed B. Makes referrals that are cost-effective and beneficial to the child, working within existing healthcare coverage whenever possible C. Communicates with the specialist to provide continuity of care D. Remains available to the specialist and follows up on recommendations. Standard 6. Evaluation The pediatric hematology APRN evaluates response to the treatment plan and to interventions and monitors progress toward achievement of expected outcomes. 24

33 Evaluation allows for determination of reaching goals and, if goals are not met, for reassessing and redefining the plan and goals. The pediatric hematology APRN A. Develops and maintains a systematic and effective evaluation process to assess the accuracy of the diagnosis and effectiveness of interventions in relation to the attainment of expected outcomes B. Synthesizes results of the evaluation to determine the impact of the plan on affected children, families, groups, communities, and institutions C. Uses the results of the evaluation to make or recommend changes to policy, procedure, or protocol, as appropriate. 25

34 STANDARDS OF PROFESSIONAL PERFORMANCE: PEDIATRIC HEMATOLOGY ADVANCED PRACTICE REGISTERED NURSE Standard 7. Quality of Practice The pediatric hematology APRN systematically evaluates the quality and effectiveness of clinical (RN) and advanced (APRN) pediatric hematology nursing practice. The pediatric hematology APRN delivers expert care in a healthcare environment that is continually changing as a result of technologic and scientific advances in basic and behavioral sciences and information systems. The pediatric hematology APRN is expected to be a leader in the development of patient-care standards and the evaluation of outcomes. The pediatric hematology APRN A. Maintains specialized education, certification, and licensure requirements according to institutional, state, and federal laws and regulations B. Promotes the delivery of evidence-based nursing practice throughout the healthcare system, including the APRN s own clinical practice C. Develops and monitors standards of care through evidence-based practice to improve the care of children with hematologic disorders and their families in collaboration with other healthcare team members D. Collaborates with the healthcare team to design and coordinate quality improvement activities and to formulate comprehensive plans to provide high-quality, cost-effective care E. Analyzes outcome data from the literature and quality-improvement processes to identify necessary changes that will improve pediatric hematology care throughout the healthcare system F. Involves children and families in the analysis of quality-improvement activities G. Evaluates practice environment and quality of nursing care and identifies opportunities for research. Standard 8. Education The pediatric hematology APRN acquires and maintains current knowledge and skills in the area of pediatric hematology nursing and related disciplines. The rapid expansion of knowledge pertaining to basic and behavioral sciences, technology, and information systems requires ongoing commitment to scientific inquiry and learning. 26

35 Measurement criteria The pediatric hematology APRN Participates in continuing education opportunities and uses current research findings and other evidence to expand clinical knowledge, enhance role performance, and increase knowledge of professional nursing issues. Standard 9. Professional Practice Evaluation The pediatric hematology APRN evaluates own clinical practice to provide competent, culturally sensitive care and is held accountable to the public and the profession. The pediatric hematology APRN functions with a high degree of independence and must assume responsibility for self-evaluation by soliciting input from supervisors, peers, and colleagues. The pediatric hematology APRN A. Evaluates own advanced nursing practice in regard to institutional, state, and federal laws and regulations as well as to child and family outcomes B. Seeks feedback from peers, colleagues, healthcare team members, and the child and family regarding practice and performance C. Identifies personal strengths and weaknesses and independently seeks opportunities to meet educational and other performance goals D. Communicates areas of concern regarding performance of peers and other healthcare professionals in a professional and ethical manner. Standard 10. Collegiality The pediatric hematology APRN establishes collegial relationships with all members of the healthcare team and contributes to the professional development of peers and colleagues. The pediatric hematology APRN interacts with a variety of healthcare team members to ensure quality care for children with hematologic disorders and their families and is a role model of expert nursing care to all members of the healthcare team. The pediatric hematology APRN A. Models expert practice to healthcare team members and healthcare consumers B. Mentors other RNs and colleagues to encourage high-level care for children and families 27

36 C. Participates in interdisciplinary teams that contribute to nursing role development, advanced nursing practice, and improved health services for children and families. Standard 11. Collaboration The pediatric hematology APRN promotes and collaborates with the multidisciplinary team to care for the child and family. The complexity of pediatric hematology care requires partnership with other disciplines to enhance patient care through education, consultation, care coordination and management, technological development, and research. Through collaborative practice, the pediatric hematology APRN works with other team members to care for the child and family. The pediatric hematology APRN A. Collaborates with multidisciplinary healthcare team members to provide care to the child and family B. Facilitates interdisciplinary processes and collaborates with members of the healthcare team to improve care C. Collaborates with other disciplines and members of the healthcare team regarding continuity of care, rehabilitation, home care, symptom management, palliative care, and hospice care D. Documents all communications regarding the plan of care, including the rationale for changes and any collaborative discussions E. Works collaboratively with parents to ensure optimal care is provided to children with hematologic disorders F. Collaborates within appropriate research organizations to develop research and clinical trials for the treatment of children with hematologic disorders. Standard 12. Ethics The pediatric hematology APRN respects the rights of all children and families, and the APRN makes decisions and designs interventions that are in agreement with ethical principles. Technologic advances and scarce resources have created an environment in which ethical issues frequently arise. The pediatric hematology APRN is a clinical, professional leader who must advocate for patient and family rights and assist in resolving conflicts. 28

37 The pediatric hematology APRN A. Instructs others and models ethical nursing practice by applying the basic ethical principles of autonomy, beneficence, nonmaleficence, justice, and veracity B. Examines own views and helps other to assess personal beliefs about autonomy, rights of minors, quality of life, death, suffering, truth-telling, equality, and access to care C. Informs children and families of the risks, benefits, and outcomes of healthcare regimens to promote informed decision-making D. Maintains child and family confidentiality E. Ensures Institutional Review Board regulations are followed in clinical trials and that developmentally appropriate child assent is obtained as indicated F. Participates in multidisciplinary teams that seek to resolve ethical conflicts and address risks, benefits, and interests, including the child and family as appropriate G. Reviews institutional policies and procedures that relate to biomedical or organizational ethics as appropriate H. Provides quality care to all children regardless of race, culture, educational background, spiritual beliefs, socioeconomic status, or the ability to pay I. Addresses advance directives with adolescents 18 years of age and older. Standard 13. Research The pediatric hematology APRN conducts and promotes research to maintain an evidence-based pediatric hematology nursing practice and contributes to nursing knowledge through the incorporation of research activities into practice. Through advanced education and practice, the pediatric hematology APRN is in a position to make significant contributions to the identification of pertinent areas of research in pediatric hematology nursing. The pediatric hematology APRN may, as an individual or in collaboration with others, design and conduct studies to answer important questions that affect the care of the child and family. The pediatric hematology APRN A. Commits to translational research in pediatric hematology nursing practice B. Promotes evidence-based practice in all areas of pediatric hematology nursing C. Examines and evaluates practice in regard to current research findings D. Contributes to nursing knowledge by conducting research to improve pediatric hematology care 29

38 E. Serves as resource to staff nurses regarding the research process and researchbased nursing practice F. Participates in appropriate clinical trials research through the development, implementation, and evaluation of pediatric clinical trials G. Disseminates research findings through practice, education, consultation, and publication H. Ensures the protection of research subjects. Standard 14. Resource Utilization The pediatric hematology APRN provides high-quality, cost-effective care across the healthcare continuum. The pediatric hematology APRN provides holistic care to children and families. His or her expertise reaches across the continuum of care, providing a unique opportunity to identify and implement strategies for using healthcare resources wisely. The pediatric hematology APRN A. Uses organizational and community resources to formulate multidisciplinary plans of care B. Develops innovative solutions for care problems that maintain high-quality of care and use resources wisely C. Develops evaluation strategies to demonstrate high-quality, cost-effective care. Standard 15. Leadership The pediatric hematology APRN serves as a leader, role model, and mentor for the professional development of peers, colleagues, staff, and students at the local and national level. The pediatric hematology APRN is considered the nursing clinical expert and must demonstrate leadership skills to promote nursing care delivered to children and families as well as the profession of pediatric hematology nursing. The pediatric hematology APRN A. Works to influence professional advocacy and legislative organizations to improve the care of children with hematologic disorders and their families B. Promotes communication of information and advancement of pediatric hematology nursing through writing, publishing, and oral presentations to both professional and lay audiences 30

39 C. Contributes to the professional development and education of pediatric hematology nursing D. Fosters a learning environment by serving as a role model, mentor, preceptor, and facilitator of learning for pediatric hematology nurses, pediatric hematology APRNs, and students E. Designs innovations to promote change in pediatric hematology nursing practice and to improve the health outcomes of children with hematologic disorders and their families F. Initiates and revises protocols and guidelines to reflect evidence-based practice and to improve health outcomes for children with hematologic disorders G. Participates in professional and specialty nursing organizations, as well as advocacy and service organizations related to pediatric hematology. 31

40 References American Nurses Association. (2001). Code of ethics for nurses with interpretive statements. Washington, DC: Author. American Nurses Association. (2004). Nursing: Scope of standards of practice. Washington, DC: Author. Bibliography American Nurses Association. (2008). Pediatric nursing scope and standards of practice. Silver Spring, MD: Author. Cornett, J. (Ed.). (2002). The hemophilia handbook (4th ed.). Atlanta, GA: Hemophila of Georgia, Inc. Earles, A., Lessing, S., & Vichinsky, E. (Eds.). A parent handbook for sickle cell disease, part II: Six to eighteen years of age (Rev. ed.). Richmond, CA: California Department of Health Services. Hockenberry-Eaton, M. (Ed.). (2008). Essentials of pediatric hematology/oncology nursing: A core curriculum (3rd ed.). Glenview, IL: Association of Pediatric Hematology/ Oncology Nurses. Lessing, S., & Vichinsky, E. (Eds.). A parent handbook for sickle cell disease, part I: Birth to six years of age (Rev. ed.). Richmond, CA: California Department of Health Services. National Institutes of Health. National Heart, Lung, and Blood Institute. (2002). The management of sickle cell disease (4th ed.; NIH Publication No ). Bethesda, MD: Author. Available for download at Wysoker, A. (2001). Standards of care. Journal of the American Psychiatric Nurse Association, 7(5),

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