- Email: [email protected]
Advancing the Development of the Guidelines for the Nursing of Children, Adolescents, and Families: 2014 Revision: Process, Development, and Dissemination
DEPARTMENT
Professional Issues
Advancing the Development of the Guidelines for the Nursing of Children, Adolescents, and Families: 2014 Revision: Process, Development, and Dissemination Cecily L. Betz, PhD, RN, FAAN, Julia Muennich Cowell, PhD, APHN-BC, FAAN, Melissa Spezia Faulkner, PhD, RN, FAAN, Veronica D. Feeg, PhD, RN, FAAN, Cindy Smith Greenberg, DNSc, RN, PNP-BC, FAAN, Marilyn J. Krajicek, EdD, RN, FAAN, Terri H. Lipman, PhD, CRNP, FAAN, Marie L. Lobo, PhD, RN, FAAN, Wendy M. Nehring, PhD, RN, FAAN, FAAIDD, Martha Craft-Rosenberg, PhD, RN, FAAN, & Judith A. Vessey, PhD, DPNP, MBA, FAAN
Section Editor Andrea Kline Tilford, MS, RN, CPNP-PC/AC, CCRN, FCCM Children’s Hospital of Michigan Detroit, Michigan Cecily L. Betz, Professor of Clinical Pediatrics, USC Keck School of Medicine, Los Angeles, CA; Director of Nursing Training, Director of Research, USC University Center of Excellence in Developmental Disabilities, Children’s Hospital Los Angeles, Los Angeles, CA; and Editor-in-Chief, Journal of Pediatric Nursing: Nursing Care of Children and Families. Julia Muennich Cowell, Professor Emerita, College of Nursing, Rush University, Chicago, IL, and Executive Editor, The Journal of School Nursing. Melissa Spezia Faulkner, Professor, Nell Hodgson Woodruff School of Nursing, and Professor, Department of Pediatrics, Emory University, Atlanta, GA.
Nursing Specialty, National Resource Center for Health and Safety in Child Care and Early Education, University of Colorado College of Nursing Anschutz Medical Campus, Denver, CO. Terri H. Lipman, Miriam Stirl Endowed Term Professor of Nutrition, Professor of Nursing of Children, and Assistant Dean for Community Engagement, School of Nursing, University of Pennsylvania, Philadelphia, PA. Marie L. Lobo, Professor Emerita, College of Nursing, University of New Mexico, Albuquerque, NM. Wendy M. Nehring, Dean and Professor, College of Nursing, East Tennessee State University, Johnson City, TN. Martha Craft-Rosenberg, Professor Emerita, School of Nursing, University of Iowa, Iowa City, IA. Judith A. Vessey, Lelia Holden Carroll Chair, William F. Connell School of Nursing, Boston College, and Nurse Scientist, Boston Children’s Hospital, Boston, MA. Conflicts of interest: None to report.
Veronica D. Feeg, Gitenstein Professor, Associate Dean, and Director of the PhD Program, Division of Nursing, and Assistant Dean, Director of the Center for Nursing Research and Scholarly Practice, Molloy College, Rockville Centre, NY.
Correspondence: Cecily L. Betz, PhD, RN, FAAN, 4750 Sunset Blvd, MS #53, Los Angeles, CA 90027; e-mail: [email protected]. edu.
Cindy Smith Greenberg, Interim Associate Dean, College of Health and Human Development, California State University, Fullerton, Fullerton, CA.
Copyright Q 2015 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.
Marilyn J. Krajicek, Professor and Director, Doctor of Nursing Practice (DNP MPH) Dual Degree Program and DNP Public Health
http://dx.doi.org/10.1016/j.pedhc.2015.11.003
www.jpedhc.org
0891-5245/$36.00
-/- 2015
1
ABSTRACT This article details the process used to develop the revision of the original Guidelines that resulted in the development of the 2014 Health Care Quality and Outcomes Guidelines for Nursing of Children, Adolescents, and Families. Members of the 2014 Guidelines Revision Task Force conducted an extensive process of revision, which included the input and approval of 16 pediatric and child health nursing and affiliated organizational endorsements. The revised Guidelines were presented to and endorsed by the American Academy of Nursing Board. These Guidelines are designed for use by pediatric and child health nurses who work in a range of health care and community-based settings. The Guidelines are proposed to be used as a framework for nurse-directed services and intervention development and testing, as a model for undergraduate and graduate pediatric and child health nursing program curriculum development, and as the theoretical basis for nursing investigations on the care of children, adolescents, and families. J Pediatr Health Care. (2015) -, ---.
KEY WORDS Nursing and child health guidelines, nursing intervention development and testing, pediatric and child health nursing curriculum development
This article presents the description of the newly revised Health Care Quality and Outcomes Guidelines for Nursing of Children, Adolescents and Families (hereafter referred to as Guidelines) and the overview of the process involved with the development of the 2014 revision. For more than 15 years, the Child, Adolescent and Family Expert Panel of the American Academy of Nursing (AAN) provided the leadership with the development, support, dissemination, and advocacy of the Guidelines. The Guidelines serve as the core framework of nursing across all specialized areas of practice and address the comprehensive health care needs of children, adolescents, and families. These Guidelines are intended for use by nurses who practice in a variety of settings such as health care organizations and community and school sites and who teach in academic programs. The Guidelines are intended to serve as the framework for the development and testing of nursedirected services and interventions, the model for curriculum development for undergraduate and graduate pediatric and child health nursing programs, and for theoretically supported nursing investigations that study the care of children, adolescents, and families. HISTORICAL PERSPECTIVE Beginning in the late 1990s, the leaders of the Child and Family Expert Panel recognized the need to operationalize the commonalities of pediatric and child health nursing specialty care, given its broad and unique scope of practice. The development of a core framework of pediatric and child health care would provide a template for practice, education, research, policy making, and 2
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advocacy that is needed to contribute to the science and professional growth of this specialty field. Development of the Guidelines began in 1999 under the leadership of Drs. Marion Broome and Veronica Feeg. Drs. Marilyn Krajicek and Martha Craft-Rosenberg continued to shepherd this effort until it resulted in the final version of the 2004 Guidelines under the leadership of Drs. Cecily Betz and Julia Cowell. This effort also involved collaboration with nine neonatal, pediatric, child, and family nursing organizations, as well as the American Nurses Association (ANA), representing 50,000 child health nurses. These organizations included the following: American Association of Mental Retardation (AAMR, currently American Association on Intellectual and Developmental Disabilities), Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN), International Association of Newborn Nurses (IANN), National Association of Neonatal Nurses (NANN), National Association of Pediatric Nurse Associates and Practitioners (NAPNAP), National Association of School Nurses (NASN), Northeast Pediatric Cardiology Nurse Association (NPCNA), Pediatric Endocrinology Nursing Society (PENS), and Society of Pediatric Nurses (SPN). As the Guidelines reached completion, efforts were directed to their dissemination, which included a number of journal publications (Betz, Cowell, Lobo, & Craft-Rosenberg, 2004; Craft-Rosenberg, Krajicek, & Shin, 2002). A notable outcome was the publication of a text (Craft-Rosenberg & Krajicek, 2006) that included a chapter devoted to each guideline, discussing nursing care and providing comments on multidisciplinary collaboration. Members of the Child and Family Expert Panel contributed to this text as chapter authors.
BOX 1. Pediatric and child health nursing and affiliated organizational endorsements American Association on Intellectual and Developmental Disabilities American Nurses Association Association of Pediatric Hematology/Oncology Nurses Association of Community Health Nurse Educators Association of Women’s Health, Obstetric and Neonatal Nurses Children’s Hospice International International Family Nursing Association National Association of Hispanic Nurses National Association of Neonatal Nurses National Association of Pediatric Nurse Practitioners National Association of School Nurses Pediatric Endocrinology Nursing Society Public Health Nursing Section, American Public Health Association Society of Pediatric Nurses Association of Public Health Nurses The National Black Nurses Association
Journal of Pediatric Health Care
BOX 2. 2014 Health Care Quality and Outcome Guidelines 1. Children and youthsa have an identified health home (medical home).b 2. Children, youths, and families receive care that supports growth and development. 3. Children, youths, families, and health care providers are partners in decisions, planning, and delivery of care, including appropriate community services. 4. Cultural values, beliefs, and preferences are integral to family-centered care. 5. Family concerns are recognized as a priority and family strengths are respected and supported in the care of children and youths. 6. Children, youths, and families have high-quality, affordable, and accessible health care. 7. The child’s, youth’s, and family’s needs are identified and prioritized and services are offered. 8. Children, youths, and families receive care that optimizes wellness, promotes and maintains physical and mental health, and prevents disease and injury. 9. Pregnant adolescents and women, children, youths, and families have access to genetic and genomic testing and genomic appropriate counseling. 10. Children and youths receive care that is delivered in a physically and emotionally safe environment. 11. Children’s, youths’, and families’ privacy and rights are protected. 12. Children and youths with acute, critical, or chronic needs and their families receive the full range of services. 13. Children and youths with disabilities and/or special health care needs and their families receive the full range of services. 14. Children, youths, and families receive appropriate palliative and/or hospice care. 15. Children, youths, and families receive appropriate prevention and community referral services. 16. Children’s, youths’, and families’ health risk behaviors and problems are identified and addressed. 17. Children, youths, and families are fully informed of the process, outcomes, and alternatives to care, including quality of life. Assumptions 1. Children, youths, and families will receive equitable, nonjudgmental care regardless of race, religion, socioeconomic status, gender, sexual orientation, or gender identity. 2. All children, youths, and families should have the assurance their health care providers are competent, address communication barriers, and provide culturally sensitive care.c 3. Conflicts among children, youths, other family members, and/or health care providers over appropriate or desired services should be negotiated with respect for the dignity and rights of children, youths, and family members to support their self-determination. 4. All children, youths, and families should have access to affordable, high-quality, and comprehensive health care. 5. The health of children, youths, and families includes their physical, psychosocial, cultural, and spiritual aspects of living. 6. The home and community environments where they live, work, learn, and play will have significant impact on children, youths, and families. 7. Optimal health care is a continuous health team effort. 8. Health care is affected by socioeconomic and cultural partnerships. Values 1. Family health directly impacts the health of the children, youth, and families. 2. Holistic health care is integrated into the range of services offered. 3. Care is provided from preconception to a peaceful death. 4. The health care provider is responsible for quality care. Quality care is based on scientific evidence, best practices, provider expertise, and patient and family preferences; it is ethical, safe, clinically efficacious, and cost-effective. Quality care is health care that meets family needs and incorporates their priorities and preferences. a Children and youths: This expression is used to refer to the following age groupings: Children refer to the age group from birth to late school age (up to and including 11 years of age); youths refers to the age group of early adolescents to emerging adults (ages 12 to 21 years of age). b Health home: Of note, the Accountable Care Act uses the terminology health home in relation to Medicaid, whereas in the original version of the Guidelines, the term healthcare home was used. The Child, Adolescent, and Family Expert Panel has chosen to adapt the terminology health home for this revision. The term medical home was included in this revision as noted in the parenthesis. The rationale for inclusion of the term medical home is predicated on the widespread use and adoption of the term by federal, state, and local agencies. c Cultural sensitivity: Cultural sensitivity refers to the acknowledgement and respect for cultural differences in terms of practices and beliefs of individuals from cultures other than those of health care professionals. This term was selected for use based on the rationale that health care professionals are unlikely to become culturally competent when a deficit of complete understanding of the customs and practices of another culture exists, especially when the language of the community is not known. (Continued on next page)
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BOX 2. Continued. Advanced Practice Registered Nurse Advanced practice registered nurse is a term used to encompass certified nurse-midwife (CNM), certified registered nurse anesthetist (CRNA), clinical nurse specialist (CNS), and nurse practitioner (NP). Advanced practice nursing is broadly defined as nursing interventions that influence health care outcomes, including the direct care of individual patients, management of care for individuals and populations, administration of nursing and health care organizations, and the development and implementation of health policy (American Association of Colleges of Nursing. [2004]. AACN position statement on the practice doctorate in nursing. Washington, DC: Author). From: Consensus Model for APRN Regulation: Licensure, Accreditation, Certification & Education, July 7, 2008 The definition of an Advanced Practice Registered Nurse (APRN) is a nurse: 1. who has completed an accredited graduate-level education program preparing him/her for one of the four recognized APRN roles; 2. who has passed a national certification examination that measures APRN, role and population-focused competencies and who maintains continued competence as evidenced by recertification in the role and population through the national certification program; 3. who has acquired advanced clinical knowledge and skills preparing him/her to provide direct care to patients, as well as a component of indirect care; however, the defining factor for all APRNs is that a significant component of the education and practice focuses on direct care of individuals; 4. whose practice builds on the competencies of registered nurses (RNs) by demonstrating a greater depth and breadth of knowledge, a greater synthesis of data, increased complexity of skills and interventions, and greater role autonomy; 5. who is educationally prepared to assume responsibility and accountability for health promotion and/or maintenance as well as the assessment, diagnosis, and management of patient problems, which includes the use and prescription of pharmacologic and non-pharmacologic interventions; 6. who has clinical experience of sufficient depth and breadth to reflect the intended license; and 7. who has obtained a license to practice as an APRN in one of the four APRN roles: certified registered nurse anesthetist (CRNA), certified nurse-midwife (CNM), clinical nurse specialist (CNS), or certified nurse practitioner (CNP).
To reach a broad audience of nurses who provide care to children, adolescents, and families, editors of the major pediatric and child health nursing journals were approached with the request that they publish the Guidelines. Many of the editors responded affirmatively, and the Guidelines were published in the Journal of Pediatric Health Care, the Journal of Pediatric Nursing, and the Journal of Specialists in Pediatric Nursing. PROCESS During the 2012 Child, Adolescent, and Family (CAF) Expert Panel meeting (in 2006, the Adolescent Expert Panel had merged with the Child and Family Expert Panel to become the CAF Expert Panel), members discussed the issue of reviewing and revising the 2004 Health Care Quality and Outcome Guidelines for Nursing of Children and Families. It was suggested that a task force be convened to undertake this initiative. Eleven CAF Expert Panel members volunteered to participate in this effort, many of whom had been involved with the development of the 2004 Guidelines (author group). It was also recommended that the development of the revision replicate the process undertaken with the original work. In response to this charge, members of Guidelines Task Force convened via multiple conference calls and electronically by e-mail to review, revise, and update the 2004 Health Care Quality and Outcome 4
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Guidelines before distributing the revised Guidelines to pediatric and child health nursing and affiliated organizations for their input and endorsements. The focus of Task Force efforts was to ensure that the Guidelines reflected the changes in health care for children, adolescents, and families, as well as pediatric and child health nursing practice, that have occurred during the past 10 years. In 2013, the first phase of the revision process was completed wherein the members of the task force reviewed and revised the Guidelines as detailed in this article. The changes made by the task force in the revised Guidelines reflected the following: Use of inclusive language (i.e., language that is family-centered, person-first, and culturally sensitive) Alteration of terminology to improve intended meaning Clarification of language to reflect subsequent and projected developments in health care for children, adolescents, and families Acknowledgement of advanced practice registered nurse (APRN) roles in the Guidelines document, particularly with the increased emphasis on the APRN roles as described in the Institute of Medicine report on The Future of Nursing: Leading Change, Advancing Health (Institute of Medicine [IOM], 2010)
Journal of Pediatric Health Care
TABLE. Comparison of 2004 and 2014 revisions Characteristic
2004
2014
Number of guidelines Assumptions Values Footnotes Number of endorsements Consumer guidelines
18 6 4 None 10 Yes
17 8 4 4 16 No
This revised draft was presented during the CAF Expert Panel meeting during the 2013 meeting of the AAN in Washington, DC. During that meeting, a number of strategies were proposed to distribute the revision of the Guidelines to pediatric and child health nursing and affiliated organizations. It was determined that the most feasible and cost-efficient approach was to distribute the Guidelines electronically rather than convene face-to-face meetings with collaborators, as had been done with the original version. Furthermore, members of the CAF Expert Panel offered additional suggestions regarding other pediatric and child health nursing and affiliated organizations to add to the original partners. After that meeting, members of the Task Force contacted nursing and affiliated organizations for their input and endorsements of the Guidelines. Seven of the organizations provided feedback, with recommendations for additional changes in the Guidelines revision draft. The major recommendations could be characterized as use of more inclusive language, addition of a new guideline, deletion of a guideline that appeared repetitive, incorporation of language to better reflect the concept of the statement, addition of two assumptions, and editing of the values statements. The 16 pediatric and child health nursing and affiliated organizations that provided endorsements of the Guidelines are listed in Box 1. The final version of the revised Guidelines is presented in Box 2. The major changes of the 2014 revised Guidelines, compared with the 2004 Guidelines, are noted in the Table. The final version of the Guidelines were approved by the AAN Board in November 2014. NEXT STEPS A dissemination plan was formulated by the Guidelines Task Force. The publication of this article describing the 2014 revised Guidelines reflects the initial step of the dissemination plan. Next, the Guide-
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lines will be distributed to all pediatric and child health nursing and affiliated endorsing organizations, as well as other professional organizations whose scope includes care of children, adolescents, and families. Members of the Task Force will be available and will seek opportunities to present the Guidelines to professional audiences of the endorsing organizations to facilitate their application to practice, education, research, and advocacy efforts. As with .the intent of the previous version, these Guidelines is the editors of the major to provide a journals in the United States and globally pediatric and child who publish research health nursing and scholarly articles framework that can on the care of children, adolescents, and fambe applied to any ilies will be invited setting, whether for to publish a guest practice, editorial on the Guidelines. In addition, education, members of the Task research, policy Force have finalized a making, or contract with a publisher for a new text advocacy edition based on the purposes. revised Guidelines. As stated previously, the intent of these Guidelines is to provide a pediatric and child health nursing framework that can be applied to any setting, whether for practice, education, research, policy making, or advocacy purposes. The goal of these Guidelines is to foster the science and practice of pediatric and child health nursing care for children, adolescents, and their families. REFERENCES Betz, C. L., Cowell, J. M., Lobo, M. L., & Craft-Rosenberg, M. (2004). American Academy of Nursing Child and Family Expert Panel: Health Care Quality and Outcomes Guidelines for Nursing of Children and Families: Phase II. Nurs Outlook, 52(6), 311-316. Craft-Rosenberg, M., & Krajicek, M. (2006). Nursing excellence for children and families. New York, NY: Springer. Craft-Rosenberg, M., Krajicek, M., & Shin, D. (2002). Report of the American Academy of Nursing Child-Family Expert Panel: Identification of quality and outcome indicators for maternal child nursing. Nurs Outlook, 50, 57-60. Institute of Medicine. (2010). The future of nursing: Leading change, advancing health. Retrieved from http://books.nap.edu/ openbook.php?record_id=12956&page=R1
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Professional Issues
Advancing the Development of the Guidelines for the Nursing of Children, Adolescents, and Families: 2014 Revision: Process, Development, and Dissemination Cecily L. Betz, PhD, RN, FAAN, Julia Muennich Cowell, PhD, APHN-BC, FAAN, Melissa Spezia Faulkner, PhD, RN, FAAN, Veronica D. Feeg, PhD, RN, FAAN, Cindy Smith Greenberg, DNSc, RN, PNP-BC, FAAN, Marilyn J. Krajicek, EdD, RN, FAAN, Terri H. Lipman, PhD, CRNP, FAAN, Marie L. Lobo, PhD, RN, FAAN, Wendy M. Nehring, PhD, RN, FAAN, FAAIDD, Martha Craft-Rosenberg, PhD, RN, FAAN, & Judith A. Vessey, PhD, DPNP, MBA, FAAN
Section Editor Andrea Kline Tilford, MS, RN, CPNP-PC/AC, CCRN, FCCM Children’s Hospital of Michigan Detroit, Michigan Cecily L. Betz, Professor of Clinical Pediatrics, USC Keck School of Medicine, Los Angeles, CA; Director of Nursing Training, Director of Research, USC University Center of Excellence in Developmental Disabilities, Children’s Hospital Los Angeles, Los Angeles, CA; and Editor-in-Chief, Journal of Pediatric Nursing: Nursing Care of Children and Families. Julia Muennich Cowell, Professor Emerita, College of Nursing, Rush University, Chicago, IL, and Executive Editor, The Journal of School Nursing. Melissa Spezia Faulkner, Professor, Nell Hodgson Woodruff School of Nursing, and Professor, Department of Pediatrics, Emory University, Atlanta, GA.
Nursing Specialty, National Resource Center for Health and Safety in Child Care and Early Education, University of Colorado College of Nursing Anschutz Medical Campus, Denver, CO. Terri H. Lipman, Miriam Stirl Endowed Term Professor of Nutrition, Professor of Nursing of Children, and Assistant Dean for Community Engagement, School of Nursing, University of Pennsylvania, Philadelphia, PA. Marie L. Lobo, Professor Emerita, College of Nursing, University of New Mexico, Albuquerque, NM. Wendy M. Nehring, Dean and Professor, College of Nursing, East Tennessee State University, Johnson City, TN. Martha Craft-Rosenberg, Professor Emerita, School of Nursing, University of Iowa, Iowa City, IA. Judith A. Vessey, Lelia Holden Carroll Chair, William F. Connell School of Nursing, Boston College, and Nurse Scientist, Boston Children’s Hospital, Boston, MA. Conflicts of interest: None to report.
Veronica D. Feeg, Gitenstein Professor, Associate Dean, and Director of the PhD Program, Division of Nursing, and Assistant Dean, Director of the Center for Nursing Research and Scholarly Practice, Molloy College, Rockville Centre, NY.
Correspondence: Cecily L. Betz, PhD, RN, FAAN, 4750 Sunset Blvd, MS #53, Los Angeles, CA 90027; e-mail: [email protected]. edu.
Cindy Smith Greenberg, Interim Associate Dean, College of Health and Human Development, California State University, Fullerton, Fullerton, CA.
Copyright Q 2015 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.
Marilyn J. Krajicek, Professor and Director, Doctor of Nursing Practice (DNP MPH) Dual Degree Program and DNP Public Health
http://dx.doi.org/10.1016/j.pedhc.2015.11.003
www.jpedhc.org
0891-5245/$36.00
-/- 2015
1
ABSTRACT This article details the process used to develop the revision of the original Guidelines that resulted in the development of the 2014 Health Care Quality and Outcomes Guidelines for Nursing of Children, Adolescents, and Families. Members of the 2014 Guidelines Revision Task Force conducted an extensive process of revision, which included the input and approval of 16 pediatric and child health nursing and affiliated organizational endorsements. The revised Guidelines were presented to and endorsed by the American Academy of Nursing Board. These Guidelines are designed for use by pediatric and child health nurses who work in a range of health care and community-based settings. The Guidelines are proposed to be used as a framework for nurse-directed services and intervention development and testing, as a model for undergraduate and graduate pediatric and child health nursing program curriculum development, and as the theoretical basis for nursing investigations on the care of children, adolescents, and families. J Pediatr Health Care. (2015) -, ---.
KEY WORDS Nursing and child health guidelines, nursing intervention development and testing, pediatric and child health nursing curriculum development
This article presents the description of the newly revised Health Care Quality and Outcomes Guidelines for Nursing of Children, Adolescents and Families (hereafter referred to as Guidelines) and the overview of the process involved with the development of the 2014 revision. For more than 15 years, the Child, Adolescent and Family Expert Panel of the American Academy of Nursing (AAN) provided the leadership with the development, support, dissemination, and advocacy of the Guidelines. The Guidelines serve as the core framework of nursing across all specialized areas of practice and address the comprehensive health care needs of children, adolescents, and families. These Guidelines are intended for use by nurses who practice in a variety of settings such as health care organizations and community and school sites and who teach in academic programs. The Guidelines are intended to serve as the framework for the development and testing of nursedirected services and interventions, the model for curriculum development for undergraduate and graduate pediatric and child health nursing programs, and for theoretically supported nursing investigations that study the care of children, adolescents, and families. HISTORICAL PERSPECTIVE Beginning in the late 1990s, the leaders of the Child and Family Expert Panel recognized the need to operationalize the commonalities of pediatric and child health nursing specialty care, given its broad and unique scope of practice. The development of a core framework of pediatric and child health care would provide a template for practice, education, research, policy making, and 2
Volume - Number -
advocacy that is needed to contribute to the science and professional growth of this specialty field. Development of the Guidelines began in 1999 under the leadership of Drs. Marion Broome and Veronica Feeg. Drs. Marilyn Krajicek and Martha Craft-Rosenberg continued to shepherd this effort until it resulted in the final version of the 2004 Guidelines under the leadership of Drs. Cecily Betz and Julia Cowell. This effort also involved collaboration with nine neonatal, pediatric, child, and family nursing organizations, as well as the American Nurses Association (ANA), representing 50,000 child health nurses. These organizations included the following: American Association of Mental Retardation (AAMR, currently American Association on Intellectual and Developmental Disabilities), Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN), International Association of Newborn Nurses (IANN), National Association of Neonatal Nurses (NANN), National Association of Pediatric Nurse Associates and Practitioners (NAPNAP), National Association of School Nurses (NASN), Northeast Pediatric Cardiology Nurse Association (NPCNA), Pediatric Endocrinology Nursing Society (PENS), and Society of Pediatric Nurses (SPN). As the Guidelines reached completion, efforts were directed to their dissemination, which included a number of journal publications (Betz, Cowell, Lobo, & Craft-Rosenberg, 2004; Craft-Rosenberg, Krajicek, & Shin, 2002). A notable outcome was the publication of a text (Craft-Rosenberg & Krajicek, 2006) that included a chapter devoted to each guideline, discussing nursing care and providing comments on multidisciplinary collaboration. Members of the Child and Family Expert Panel contributed to this text as chapter authors.
BOX 1. Pediatric and child health nursing and affiliated organizational endorsements American Association on Intellectual and Developmental Disabilities American Nurses Association Association of Pediatric Hematology/Oncology Nurses Association of Community Health Nurse Educators Association of Women’s Health, Obstetric and Neonatal Nurses Children’s Hospice International International Family Nursing Association National Association of Hispanic Nurses National Association of Neonatal Nurses National Association of Pediatric Nurse Practitioners National Association of School Nurses Pediatric Endocrinology Nursing Society Public Health Nursing Section, American Public Health Association Society of Pediatric Nurses Association of Public Health Nurses The National Black Nurses Association
Journal of Pediatric Health Care
BOX 2. 2014 Health Care Quality and Outcome Guidelines 1. Children and youthsa have an identified health home (medical home).b 2. Children, youths, and families receive care that supports growth and development. 3. Children, youths, families, and health care providers are partners in decisions, planning, and delivery of care, including appropriate community services. 4. Cultural values, beliefs, and preferences are integral to family-centered care. 5. Family concerns are recognized as a priority and family strengths are respected and supported in the care of children and youths. 6. Children, youths, and families have high-quality, affordable, and accessible health care. 7. The child’s, youth’s, and family’s needs are identified and prioritized and services are offered. 8. Children, youths, and families receive care that optimizes wellness, promotes and maintains physical and mental health, and prevents disease and injury. 9. Pregnant adolescents and women, children, youths, and families have access to genetic and genomic testing and genomic appropriate counseling. 10. Children and youths receive care that is delivered in a physically and emotionally safe environment. 11. Children’s, youths’, and families’ privacy and rights are protected. 12. Children and youths with acute, critical, or chronic needs and their families receive the full range of services. 13. Children and youths with disabilities and/or special health care needs and their families receive the full range of services. 14. Children, youths, and families receive appropriate palliative and/or hospice care. 15. Children, youths, and families receive appropriate prevention and community referral services. 16. Children’s, youths’, and families’ health risk behaviors and problems are identified and addressed. 17. Children, youths, and families are fully informed of the process, outcomes, and alternatives to care, including quality of life. Assumptions 1. Children, youths, and families will receive equitable, nonjudgmental care regardless of race, religion, socioeconomic status, gender, sexual orientation, or gender identity. 2. All children, youths, and families should have the assurance their health care providers are competent, address communication barriers, and provide culturally sensitive care.c 3. Conflicts among children, youths, other family members, and/or health care providers over appropriate or desired services should be negotiated with respect for the dignity and rights of children, youths, and family members to support their self-determination. 4. All children, youths, and families should have access to affordable, high-quality, and comprehensive health care. 5. The health of children, youths, and families includes their physical, psychosocial, cultural, and spiritual aspects of living. 6. The home and community environments where they live, work, learn, and play will have significant impact on children, youths, and families. 7. Optimal health care is a continuous health team effort. 8. Health care is affected by socioeconomic and cultural partnerships. Values 1. Family health directly impacts the health of the children, youth, and families. 2. Holistic health care is integrated into the range of services offered. 3. Care is provided from preconception to a peaceful death. 4. The health care provider is responsible for quality care. Quality care is based on scientific evidence, best practices, provider expertise, and patient and family preferences; it is ethical, safe, clinically efficacious, and cost-effective. Quality care is health care that meets family needs and incorporates their priorities and preferences. a Children and youths: This expression is used to refer to the following age groupings: Children refer to the age group from birth to late school age (up to and including 11 years of age); youths refers to the age group of early adolescents to emerging adults (ages 12 to 21 years of age). b Health home: Of note, the Accountable Care Act uses the terminology health home in relation to Medicaid, whereas in the original version of the Guidelines, the term healthcare home was used. The Child, Adolescent, and Family Expert Panel has chosen to adapt the terminology health home for this revision. The term medical home was included in this revision as noted in the parenthesis. The rationale for inclusion of the term medical home is predicated on the widespread use and adoption of the term by federal, state, and local agencies. c Cultural sensitivity: Cultural sensitivity refers to the acknowledgement and respect for cultural differences in terms of practices and beliefs of individuals from cultures other than those of health care professionals. This term was selected for use based on the rationale that health care professionals are unlikely to become culturally competent when a deficit of complete understanding of the customs and practices of another culture exists, especially when the language of the community is not known. (Continued on next page)
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BOX 2. Continued. Advanced Practice Registered Nurse Advanced practice registered nurse is a term used to encompass certified nurse-midwife (CNM), certified registered nurse anesthetist (CRNA), clinical nurse specialist (CNS), and nurse practitioner (NP). Advanced practice nursing is broadly defined as nursing interventions that influence health care outcomes, including the direct care of individual patients, management of care for individuals and populations, administration of nursing and health care organizations, and the development and implementation of health policy (American Association of Colleges of Nursing. [2004]. AACN position statement on the practice doctorate in nursing. Washington, DC: Author). From: Consensus Model for APRN Regulation: Licensure, Accreditation, Certification & Education, July 7, 2008 The definition of an Advanced Practice Registered Nurse (APRN) is a nurse: 1. who has completed an accredited graduate-level education program preparing him/her for one of the four recognized APRN roles; 2. who has passed a national certification examination that measures APRN, role and population-focused competencies and who maintains continued competence as evidenced by recertification in the role and population through the national certification program; 3. who has acquired advanced clinical knowledge and skills preparing him/her to provide direct care to patients, as well as a component of indirect care; however, the defining factor for all APRNs is that a significant component of the education and practice focuses on direct care of individuals; 4. whose practice builds on the competencies of registered nurses (RNs) by demonstrating a greater depth and breadth of knowledge, a greater synthesis of data, increased complexity of skills and interventions, and greater role autonomy; 5. who is educationally prepared to assume responsibility and accountability for health promotion and/or maintenance as well as the assessment, diagnosis, and management of patient problems, which includes the use and prescription of pharmacologic and non-pharmacologic interventions; 6. who has clinical experience of sufficient depth and breadth to reflect the intended license; and 7. who has obtained a license to practice as an APRN in one of the four APRN roles: certified registered nurse anesthetist (CRNA), certified nurse-midwife (CNM), clinical nurse specialist (CNS), or certified nurse practitioner (CNP).
To reach a broad audience of nurses who provide care to children, adolescents, and families, editors of the major pediatric and child health nursing journals were approached with the request that they publish the Guidelines. Many of the editors responded affirmatively, and the Guidelines were published in the Journal of Pediatric Health Care, the Journal of Pediatric Nursing, and the Journal of Specialists in Pediatric Nursing. PROCESS During the 2012 Child, Adolescent, and Family (CAF) Expert Panel meeting (in 2006, the Adolescent Expert Panel had merged with the Child and Family Expert Panel to become the CAF Expert Panel), members discussed the issue of reviewing and revising the 2004 Health Care Quality and Outcome Guidelines for Nursing of Children and Families. It was suggested that a task force be convened to undertake this initiative. Eleven CAF Expert Panel members volunteered to participate in this effort, many of whom had been involved with the development of the 2004 Guidelines (author group). It was also recommended that the development of the revision replicate the process undertaken with the original work. In response to this charge, members of Guidelines Task Force convened via multiple conference calls and electronically by e-mail to review, revise, and update the 2004 Health Care Quality and Outcome 4
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Guidelines before distributing the revised Guidelines to pediatric and child health nursing and affiliated organizations for their input and endorsements. The focus of Task Force efforts was to ensure that the Guidelines reflected the changes in health care for children, adolescents, and families, as well as pediatric and child health nursing practice, that have occurred during the past 10 years. In 2013, the first phase of the revision process was completed wherein the members of the task force reviewed and revised the Guidelines as detailed in this article. The changes made by the task force in the revised Guidelines reflected the following: Use of inclusive language (i.e., language that is family-centered, person-first, and culturally sensitive) Alteration of terminology to improve intended meaning Clarification of language to reflect subsequent and projected developments in health care for children, adolescents, and families Acknowledgement of advanced practice registered nurse (APRN) roles in the Guidelines document, particularly with the increased emphasis on the APRN roles as described in the Institute of Medicine report on The Future of Nursing: Leading Change, Advancing Health (Institute of Medicine [IOM], 2010)
Journal of Pediatric Health Care
TABLE. Comparison of 2004 and 2014 revisions Characteristic
2004
2014
Number of guidelines Assumptions Values Footnotes Number of endorsements Consumer guidelines
18 6 4 None 10 Yes
17 8 4 4 16 No
This revised draft was presented during the CAF Expert Panel meeting during the 2013 meeting of the AAN in Washington, DC. During that meeting, a number of strategies were proposed to distribute the revision of the Guidelines to pediatric and child health nursing and affiliated organizations. It was determined that the most feasible and cost-efficient approach was to distribute the Guidelines electronically rather than convene face-to-face meetings with collaborators, as had been done with the original version. Furthermore, members of the CAF Expert Panel offered additional suggestions regarding other pediatric and child health nursing and affiliated organizations to add to the original partners. After that meeting, members of the Task Force contacted nursing and affiliated organizations for their input and endorsements of the Guidelines. Seven of the organizations provided feedback, with recommendations for additional changes in the Guidelines revision draft. The major recommendations could be characterized as use of more inclusive language, addition of a new guideline, deletion of a guideline that appeared repetitive, incorporation of language to better reflect the concept of the statement, addition of two assumptions, and editing of the values statements. The 16 pediatric and child health nursing and affiliated organizations that provided endorsements of the Guidelines are listed in Box 1. The final version of the revised Guidelines is presented in Box 2. The major changes of the 2014 revised Guidelines, compared with the 2004 Guidelines, are noted in the Table. The final version of the Guidelines were approved by the AAN Board in November 2014. NEXT STEPS A dissemination plan was formulated by the Guidelines Task Force. The publication of this article describing the 2014 revised Guidelines reflects the initial step of the dissemination plan. Next, the Guide-
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lines will be distributed to all pediatric and child health nursing and affiliated endorsing organizations, as well as other professional organizations whose scope includes care of children, adolescents, and families. Members of the Task Force will be available and will seek opportunities to present the Guidelines to professional audiences of the endorsing organizations to facilitate their application to practice, education, research, and advocacy efforts. As with .the intent of the previous version, these Guidelines is the editors of the major to provide a journals in the United States and globally pediatric and child who publish research health nursing and scholarly articles framework that can on the care of children, adolescents, and fambe applied to any ilies will be invited setting, whether for to publish a guest practice, editorial on the Guidelines. In addition, education, members of the Task research, policy Force have finalized a making, or contract with a publisher for a new text advocacy edition based on the purposes. revised Guidelines. As stated previously, the intent of these Guidelines is to provide a pediatric and child health nursing framework that can be applied to any setting, whether for practice, education, research, policy making, or advocacy purposes. The goal of these Guidelines is to foster the science and practice of pediatric and child health nursing care for children, adolescents, and their families. REFERENCES Betz, C. L., Cowell, J. M., Lobo, M. L., & Craft-Rosenberg, M. (2004). American Academy of Nursing Child and Family Expert Panel: Health Care Quality and Outcomes Guidelines for Nursing of Children and Families: Phase II. Nurs Outlook, 52(6), 311-316. Craft-Rosenberg, M., & Krajicek, M. (2006). Nursing excellence for children and families. New York, NY: Springer. Craft-Rosenberg, M., Krajicek, M., & Shin, D. (2002). Report of the American Academy of Nursing Child-Family Expert Panel: Identification of quality and outcome indicators for maternal child nursing. Nurs Outlook, 50, 57-60. Institute of Medicine. (2010). The future of nursing: Leading change, advancing health. Retrieved from http://books.nap.edu/ openbook.php?record_id=12956&page=R1
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