Health Care Quality and Outcome Guidelines for Nursing of Children and Families

Abstract

EDITORS FROM THE major pediatric and child and family nursing journals will be publishing copies of the Health Care Quality and Outcome Guidelines for Nursing of Children and Families and the Consumer Guide, based on the guidelines, which were produced by the Child and Family Expert Panel of the American Academy of Nursing in collaboration with 10 pediatric and child specialty nursing organizations. Obviously, this collective editorial effort demonstrates the importance of this work and the necessity of disseminating nationally and internationally the Health Care Quality and Outcome Guidelines for Nursing of Children and Families and the Consumer Guide to as many pediatric and child nurses as possible. This is the first and only time that such an editorial endeavor has been undertaken; however, these important documents represent a unified effort by many nursing organizations representing more than 60,000 pediatric and child and family organizations that first began in 1999. Under the leadership of the Child and Family Expert Panel of the American Academy of Nursing, representatives from 10 organizations 1These organizations included the American Association of Mental Retardation (AAMR), American Nurses Association (ANA), Association of Women's Health, Obstetric and Neonatal Nurse (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).1These organizations included the American Association of Mental Retardation (AAMR), American Nurses Association (ANA), Association of Women's Health, Obstetric and Neonatal Nurse (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). met several times coupled with continued dialogue via conference calls and emails to consider what the commonalities of healthcare practice are for nurses and healthcare professionals who provide care to women, infants, children, youth, and families with varied needs for healthcare in diverse settings. The 18 elements listed in the Health Care Quality and Outcome Guidelines for Nursing of Children and Families represent that shared scope of practice for nurses and healthcare professionals (Table 1). This document also includes the set of assumptions and values that shaped the development of the guidelines.Table 1Health Care Quality and Outcome Guidelines1. Children and youth have an identified health care home.2. The families of children and youth are partners in decisions, planning, and delivery of care.3. Family values, beliefs, and preferences are part of care.4. Family strengths and main concerns are obvious in the care of children and youth.5. Children, youth, and families will have accessible health care.6. Pregnant women will have accessible health care.7. Family needs are identified and services are offered.8. Children, youth, and families are directed to community services when needed.9. Children, youth, and families receive care that promotes and maintains health and prevents disease.10. Pregnant women, children, youth, and families have access to genetic testing and advice.11. Children and youth receive care that is physically and emotionally safe.12. Children's, youth's, and families' privacy and rights are protected.13. Children and youth who are very ill receive the full range of needed services.14. Children and youth with disabilities and/or special health care need to receive the full range of services.15. Children, youth, and families receive comfort care.16. Children's, youth's, and families' health and risky behaviors and problems are identified and addressed.17. Children, youth, and families receive care that supports development.18. Children, youth, and families are fully informed of the outcomes of care.Assumptions1. All children, youth, and families should have the assurance that their providers are competent.2. All children, youth, and families should have access to affordable health care.3. The children's, youth's, and families' health includes their social, physical, mental, and spiritual aspects of living.4. The home and community environments significantly impact children, youth, and families.5. Optimal health care is a continuous health team effort.6. Health care is affected by economic factors.Values1. Mother's 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, is ethical, safe, and economically reasonable. Quality care is health care that meets family needs and wishes. Open table in a new tab The intent and visions of the Health Care Quality and Outcome Guidelines for Nursing of Children and Families are multifold. These guidelines can serve as the scope of practice framework for pediatric and child nursing clinicians by which to evaluate the quality of care that they provide to infants, children, youth, and families. Nursing educators can apply the guidelines to direct the development of the curriculum for pediatric and child nursing studies. Administrators can integrate the guidelines into programmatic efforts for both consumers and staff. Researchers can develop and test interventions using the elements of the guidelines as a study framework. The most immediate consequence of developing the guidelines was the creation of the Health Care Quality and Outcomes Guidelines for Nursing of Children and Families, Consumer Version, which is presented in Table 2. The consumer version of the guidelines, based on the 18 elements, was developed to assist consumers, namely families, in assessing the quality of the health services that they receive. Providing families with this consumer guide will enable them to become more informed and empowered consumers of care. In addition, the work associated with producing the guidelines have been documented by Craft-Rosenberg & Krajicek, 2002Craft-Rosenberg M. Krajicek M.J. Report of the American Academy of Nursing Child–Family Expert Panel: Identification of quality and outcome indicators for maternal child nursing.Nursing Outlook. 2002; 50: 57-60Abstract Full Text Full Text PDF PubMed Scopus (11) Google Scholar, Betz et al., 2004Betz C.L. Cowell J.M. Lobo M.L. Craft-Rosenberg M. American Academy of Nursing Child and Family Expert Panel Health Care Quality and Outcomes Guidelines for Nursing of Children and Families: Phase II.Nursing Outlook. 2004; 52: 311-316Abstract Full Text Full Text PDF PubMed Scopus (12) Google Scholar.Table 2Health Care Quality and Outcome Guidelines for ConsumersOften times, families have questions about the healthcare that their children receive. Families may be unsure about the quality of their children's healthcare. Families may not know exactly what to expect from their children's providers—whether nurse, physician, or other healthcare professional. This set of questions is a guide to help families answer those questions. Families can review these questions to find out if they are receiving quality healthcare. Families can use this guide whenever their child receives healthcare services.1. Children and youth have an identified health care home.• Do you have a choice in selecting your health care home?• Are you satisfied with your health care home?• Does your health care home provide comprehensive care?• Does your provider address your questions and concerns?2. The families of children and youth are partners in decisions, planning, and delivery of care.• Does your provider give you enough information about your child's care?• Do you have the chance to participate in decisions about your child's care?• Is your family included in all aspects of your child's care?• Are you given the chance to say what you know about your child's health? • Does your provider answer your child's questions?• Does your provider give you time to ask questions?3. Family values, beliefs, and preferences are part of care.• Do you have a chance to share your cultural values and beliefs?• Does your provider include your values and beliefs in your child's care?• Does your provider support your values and beliefs?4. Family strengths and main concerns are obvious in the care of children and youth.• Does your provider ask you questions about your family's strengths and needs?• Does the provider seek your input in developing your plan of care?• Does the plan of care meet your family's main concerns?5. Children, youth, and families will have accessible health care.• Is health care available to you and your family when you need it?• Are you satisfied with the knowledge and skill of your family's health care provider?• Is your family provider available at times that are useful to you?• Is the location of your provider convenient?• Are the costs of your health care reasonable?• Are other health services (e.g., pharmacies, health supply stores) conveniently close to your home?• Are mental health services available when you need them?• Are dental services available when you need them?6. Pregnant women will have accessible health care.• Is health care available to you when you need it?• Are you satisfied with the knowledge and skill of your health care provider?• Is your health care provider available at times that are useful to you?• Is the location of your provider convenient?• Are the costs of your health care reasonable?• Are other health services (e.g., pharmacies, health supply stores) conveniently close to your home?7. Family needs are identified and services are offered.• Does your provider assess your family needs?• Does your provider ask about help that you might have?• Does your provider suggest resources to help with family needs?• Does your provider direct you to family support services?8. Children, youth, and families are directed to community services when needed.• Does your provider help you to identify community services?• Does your provider give you a list community services?• Does your provider refer you to community services that help you in the care of your child?• Do you receive referrals to community services when you request it?• Are community services affordable, accessible, and acceptable?9. Children, youth, and families receive care that promotes and maintains health and prevents disease.• Does your provider clearly answer your questions about your child's health?• Does your provider give you clear information about your family's health?• Does your provider offer information to foster a healthy life?• Does your provider tell you how to prevent childhood illnesses?• Does your provider give you information or websites about your child's health?10. Pregnant women, children, youth, and families have access to genetic testing and advice.• Does your provide give you the information about genetic conditions you want/need?• Does your provider clearly answer your questions about genetic conditions?• Do you understand how your family history affects your child?• Do you understand the information about genetics that are given?11. Children and youth receive care that is physically and emotionally safe.• Is the care offered in a clean place?• Is care offered in a safe place?• Do providers respect you and your child?• Can you find out about the qualifications of your provider?• Are the provider's credentials available?• Are you comfortable with the safety of your child's care?• Does your provider give you safety precaution information?12. Children's, youth's, and families' privacy and rights are protected.• Are you sure that your children's and family's medical information is kept private?• Does your provider make you feel sure that your family's health information is kept private?• Does your provider ask for your signed release for health information that is provided to insurance companies, schools, or other parties?• Are you aware of your provider's responsibility in reporting suspected child abuse?13. Children and youth who are very ill receive the full range of needed services.• Does the provider give your child easy-to-understand descriptions of procedures, treatments, and tests?• Does the provider offer services or referrals for your child's range of needs?• Does your provider coordinate other health services?14. Children and youth with disabilities and/or special health care need to receive the full range of services.• Does your provider give well child care?• Does your provider see that your child gets early screening, diagnosis, and treatment?• Does your provider identify and coordinate long-term resources adequately?• Does your provider coordinate your child's health care with other community settings?• Does your provider participate in your child's Individualized Family Service Plan (IFSP) or Individualized Education Plan (IEP)?15. Children, youth, and families receive comfort care.• Does the provider give you useful information about your child's pain or end-of-life care?• Does the provider include you in the decision-making process?• Does the provider answer your questions and concerns in a sensitive way?• Do you feel supported during this process?• Are your child's needs met?16. Children's, youth's, and families' health and risky behaviors and problems are identified and addressed.• Does your provider identify your child's health and behavior risks or problems?• Does your provider use a screening tool to identify your child's health and risky behaviors or problems?• Does your provider ask questions to assess your child's risk related to sex, drugs/alcohol, violence, and safety/abuse?17. Children, youth, and families receive care that supports development.• Does the provider ask you about your child's developmental needs?• Do you feel that the care your child receives is age appropriate?• Does your provider consider your child's chronological and developmental age and level of functioning?• Does your provider use words that you and your child understand?• Does your provider prepare you and your child for transfer to new health care providers/settings as your child grows older?• Does your provider give you guidance and parenting tips?18. Children, youth, and families are fully informed of the outcomes of care.• Does the provider give you enough information about procedures?• How does the provider give information about care in a way that you like?• Does your provider tell you about side effects that your child might have? Open table in a new tab The work of the Child and Family Expert Panel is not finished. There are plans to continue to disseminate this document and educate nursing colleagues, interdisciplinary colleagues, and consumers about these new guidelines. Furthermore, Marty Craft-Rosenberg and Marilyn Krajicek are editing a textbook entitled Elements of Nursing Excellence in the Care of Infants, Children, Youth, and Families, which is to be published soon by the Springer Publishing Company. The book will contain chapters devoted to describing each of the 18 elements of care, the available evidence, and their application to practice. Those interested in obtaining more information on these new guidelines are encouraged to directly contact the Child and Family Expert Panel via the American Academy of Nursing website wherein copies of the Health Care Quality and Outcome Guidelines for Nursing of Children and Families and Health Care Quality and Outcomes Guidelines for Nursing of Children and Families, Consumer Version, can be obtained.