Family Presence and Participation: Pediatrics Leading the Way ... And Still Evolving.

Patient- and family-centered care began in pediatrics more than two decades ago, and pediatric care has continued to lead the way in acknowledging and supporting family presence and participation in patient care and decision-making. However, many adult hospitals still have "visiting" policies that restrict the potential for true partnerships with families and other care partners. A national campaign, Better Together: Partnering with Families, developed by the Institute for Patient- and Families-Centered Care (IPFCC), urges all hospitals--pediatric and adult--to welcome families 24/7. Despite the leadership of pediatrics in family-centered care, even in children's hospitals, policy and practice must continue to evolve to strengthen partnerships with families, as described in a profile of C.S. Mott Children's Hospital and the University of Michigan Health System.

Transitions from Pediatric to Adult Care: Programs and Resources.

This third article in a series on the critical issue of the transition from pediatric to adult care for young adults with complex chronic conditions offers resources, including information about exemplary programs, to pediatric nurses. Three hospital-based programs are highlighted, four key Internet resources are identified, and five relevant articles are annotated. This information can support pediatric nurses in considering transition support options for individual teens and their families as well as in developing resources and designing programs in their own settings.

Transitioning from pediatric to adult health care: the experience of patients and families.

Due to advances in medicine, many young adults with complex chronic conditions are now able.to reach the age when they must transition from pediatric to adult care. But preparation for these transitions is often inadequate--for patients and their families, as well as for adult providers. As a result, many needs (clinical, psychosocial, and educational) may not be met, and patients and their families may feel uncertain about the quality of care. This article is the first in a series addressing this critical issue by providing insights from patients and families who have experienced transitions, as well as information about programs and available resources. In this article two parents and one young adult patient share their stories of transitioning, identify the numerous challenges they faced, and suggest strategies to improve the health care system for other patients and families.

Diversity, Equity, and Inclusion in Patient and Family Advisory Councils: Advancing Best Practice in Children's Hospitals.

INTRODUCTION: This qualitative research study explored practices that support and advance diverse membership in Patient and Family Advisory Councils (PFACs) in children's hospitals and the involvement of PFACs in organization-level diversity, equity, and inclusion work. METHOD: This study consisted of a focused literature review and 17 key informant interviews. The study sought to identify important learnings about (1) recruiting and supporting patient and family advisors (PFAs) from historically marginalized populations and (2) ways to develop and sustain meaningful partnerships with PFAs and PFACs in diversity, equity, and inclusion work. RESULTS: The study findings highlighted a number of best practices for hospitals to adopt, including more actively reaching out to communities served, addressing barriers to participation through approaches and structures such as specialty PFACs and "tiered" options for participation by PFAs, and co-creation of inclusive environments. DISCUSSION: To move forward with this work, additional research, true commitment from health care organizations, and shared guidance and tools for the field are needed.

Making meaning after the death of a child: bereaved parents share their experiences.

Some 50,000 families experience the death of a child each year in the United States (Field & Behrman, 2003). Over time, some bereaved families find or develop approaches for "making meaning" from the experience in ways that allow them to maintain a sense of connection to their child, keep the child's memory alive, and help other families who may face similar circumstances. Interviews of three families demonstrate that the process of "making meaning" is individual and often builds on past strengths and interests. The stories shared by these three families demonstrate their individual approaches as well as common themes.

Strategies for encouraging patient/family member partnerships with the health care team.

The 5th International Conference of the Institute for Patient- and Family-Centered Care (IPFCC), held in Washington, DC, from June 4-6, 2012, offered an opportunity for almost 1,000 conference participants to share and learn about exciting new patient- and family-centered initiatives occurring across the U.S. and in many other countries. One focus addressed by keynote and plenary speakers, as well as numerous conference sessions and poster presentations, was how nurses and other health care professionals can encourage patients and family members to become partners with their health care teams. Various presenters shared strategies ranging from initial approaches to acknowledging family members as part of the team and offering simple, non-threatening roles in care provision, to policies and approaches inviting increased participation in health care encounters, to higher level involvement in the care planning process, and to partnership roles extending beyond care of the individual child and family. A wealth of ideas can be implemented at various levels by individual nurses, units, and health care institutions.

Bioethics for Neonatal Cardiac Care.

BACKGROUND: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications. METHODS: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice. RESULTS: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions. CONCLUSIONS: We include specific sections that bring attention to shared decision-making, research ethics, and outcomes reporting. We review empirical evidence and highlight recommendations.

Great summer reads and family-centered care, all in one!

Award-winning author Jodi Picoult has written several novels that dramatically portray families caught in personal, financial, medical, legal, and ethical dilemmas related to their children having medical or developmental challenges. At times drawing on personal experience but always conducting extensive background research, Picoult's work is very realistic in its depiction of varied child and family scenarios. These gripping stories, while fiction, point clearly to real issues and highlight the need for and importance of a family-centered approach in pediatric care. Pediatric nurses can confidently pick up a Picoult novel for an entertaining and thought-provoking summer read.

New Year's resolutions for family-centered care!

Consider a New Year's resolution to implement at lease one family-centered change in your practice in the upcoming year. New Health Partnerships, the Institute for Family-Centered Care, and the Initiative for Pediatric palliative care are among organizations whose websites offer information, guidance, curriculum materials, and tools related to implementing family-centered care. Nurses in any setting will find material here to inspire, encourage, and facilitate turning this New Year's resolution into reality. May the coming year be a good year for you ... and for the advancement of family-centered care. We'd love to hear back about the successes you have!

The many roles of families in family-centered care--part VI.

The mother of a child with cystic fibrosis describes her journey from sorrow and fear to hope. Her journey to hope began as partnership with a knowledgeable pediatrician and cystic fibrosis team. The journey wound through demanding care requirements, anguishing questions, and new realizations. The support of friends, and immersion in information about the disease, were also empowering. An introduction to the Cystic Fibrosis Foundation led this mother to volunteering, then to serving on a chapter Board of Directors, and finally to employment by the Foundation as a fundraiser. Both parents and health care organizations benefit from such arrangements. As this author states: "Working with the Cystic Fibrosis Foundation gives me a 'big picture' view of the state of my daughter's disease, and a sense of contributing a small part to the product of its big mission to cure and control CF, and [gives me] hope."

In their own voices: families discuss end-of-life decision making--part 1. Interview by Elizabeth Ahmann.

One parent's experience with her daughter in a neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU) setting sheds light on parental involvement in end-of-life decision making. For this parent, collaborative decision making was facilitated in an environment where the parents had gotten to know the health care providers over time. Health care provider style was a factor in providing parents with access to information needed to participate in decisions. Regular meetings away from the bedside facilitated parental information gathering and joint decision making. This parent also used outside advice in making key decisions. In contrast, interaction with a minimally communicative and authoritarian style health care professional added greatly to this parent's stress in an already difficult circumstance. These are her own words.

The many roles of family members in "family-centered care"--part I.

This article is the first in a series highlighting parental roles in family-centered care. A brief history of family-centered care from the 1960s to the present provides the context for the development of numerous roles parents have begun to play in the health care system. This background is followed by a mother's description of the steps in her own evolution as a "parent advocate." Deborah Dokken first developed her voice in the health care system as a parent to three premature infants, one of whom survived. Dokken used the skills she developed as a NICU parent to help other families through a peer-support program. She was subsequently invited to serve on a hospital's Ethics Committee; later to participate as a co-investigator and consultant on a palliative care education project; and most recently to be a member of several federal level health care advisory committees. Several themes in her development as a parent advocate included: readiness and commitment to assume new roles; the open support of at least one care professional in each setting; the identification of roles that matched her interest, background, and skills; and a growing conviction of her ability to contribute in a holistic way. Subsequent articles in this series will introduce other parents as they describe a variety of parental roles in family-centered care. We hope that illustration of these roles will inspire further involvement of parents in the pediatric health care system, at all levels.

A study of parent/grandparent education for managing a febrile illness using the CALM approach.

INTRODUCTION: The purpose of this study was to examine the effectiveness of fever management education in increasing knowledge, confidence, comfort, and satisfaction of the parent/grandparent. METHOD: A randomized repeated measures design was used to evaluate the effectiveness of an educational brochure and video. After baseline data were collected on parent/grandparents of children receiving standard care, each site was randomized into two groups: Group 1 parents were given a video and brochure about fever management as they left the clinic/office; Group 2 were shown the video and given the brochure before seeing their health care provider. The parent/grandparents of 216 children, mean age 21.8 months, completed the Fever Management Questionnaire (FMQ) at 48-72 hours, 1, 3, and 6 months post-education. RESULTS: Knowledge scores of parents/grandparents in both CALM groups were significantly higher than those in the control group at 48 hours and 1-month post-visit. By 6 months, the knowledge level of the parent/grandparents in CALM2, those who viewed the video in the office, was significantly different from the other two groups. Satisfaction, comfort, and confidence of all three groups were high at all three points. Parents/grandparents in both CALM groups were highly satisfied with the education they received. DISCUSSION: Educating parent/grandparents about fever management using written and video materials is effective in increasing knowledge about fever management.

NIH Consensus Development Conference statement: inhaled nitric-oxide therapy for premature infants.

Premature birth is a major public health problem in the United States and internationally. Infants born at or before 32 weeks' gestation (2% of all births in the United States in 2007) are at extremely high risk for death in the neonatal period or for pulmonary, visual, and neurodevelopmental morbidities with lifelong consequences including bronchopulmonary dysplasia, retinopathy of prematurity, and brain injury. Risks for adverse outcomes increase with decreasing gestational age. The economic costs to care for these infants are also substantial (estimated at $26 billion in 2005 in the United States). It is clear that the need for strategies to improve outcomes for this high-risk population is great, and this need has prompted testing of new therapies with the potential to decrease pulmonary and other complications of prematurity. Inhaled nitric oxide (iNO) emerged as one such therapy. To provide health care professionals, families, and the general public with a responsible assessment of currently available data regarding the benefits and risks of iNO in premature infants, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Heart, Lung, and Blood Institute, and the Office of Medical Applications of Research of the National Institutes of Health convened a consensus-development conference. Findings from a substantial body of experimental work in developing animals and other model systems suggest that nitric oxide may enhance lung growth and reduce lung inflammation independently of its effects on blood vessel resistance. Although this work demonstrates biological plausibility and the results of randomized controlled trials in term and near-term infants were positive, combined evidence from the 14 randomized controlled trials of iNO treatment in premature infants of ≤ 34 weeks' gestation shows equivocal effects on pulmonary outcomes, survival, and neurodevelopmental outcomes.

Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families.

OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational intervention on participants and participant institutions. SETTING: Retreats lasting 2.5 days. PARTICIPANTS: Physicians, nurses, psychosocial staff, and bereaved parents. INTERVENTION: "Relational learning across boundaries" pedagogy. MAIN OUTCOME MEASURES: Analysis of participant questionnaires (n = 782, response rate of 84%), team leader surveys (n = 72, response rate of 71%), and follow-up interview with subsample (n = 21, response rate of 81%). Outcomes included confidence to act and institutional improvements achieved. RESULTS: Seventy-four percent of team leaders reported significant or moderate improvement in pediatric palliative care after the retreat; only 1% reported no improvement. Ninety-one percent credited the retreat experience as being somewhat or very instrumental to the improvements, which included the establishment of pediatric palliative care and bereavement programs, improvements in interdisciplinary communication, care coordination, clinician-family interaction at the bedside, and educational programs. Participants attributed the impact of the 2.5-day retreat to its key pedagogical features, involvement of family members as equal participants and participation of colleagues from other disciplines and care settings, as well as the ground rules used for the small group seminars. CONCLUSIONS: The intervention was successful in improving clinicians' confidence and catalyzed improvements in pediatric palliative care within participating institutions. Relational learning holds promise for professional learning, especially when the educational goal is tied to enabling a shift in social and ethical norms.

NIH consensus development conference: Inhaled nitric oxide therapy for premature infants.

OBJECTIVE: To provide healthcare providers, patients, and the general public with a responsible assessment of currently available data on the use of inhaled nitric oxide in early routine, early rescue, or later rescue regimens in the care of premature infants <34 weeks gestation who require respiratory support. PARTICIPANTS: A non-Department of Health and Human Services, nonadvocate 16-member panel representing the fields of biostatistics, child psychology, clinical trials, ethics, family-centered care, neonatology, neurodevelopmental follow-up, nursing, pediatric epidemiology, neurobehavior, neurological surgery, neurology, and pulmonology, perinatology, and research methodology. In addition, 18 experts from pertinent fields presented data to the panel and conference audience. EVIDENCE: Presentations by experts and a systematic review of the literature prepared by the Johns Hopkins University Evidence-based Practice Center, through the Agency for Healthcare Research and Quality. Scientific evidence was given precedence over anecdotal experience. CONFERENCE PROCESS: The panel drafted its statement based on scientific evidence presented in open forum and on published scientific literature. The draft statement was presented on the final day of the conference and circulated to the audience for comment. The panel released a revised statement later that day at http://consensus.nih.gov. This statement is a report of the panel and is not a policy statement of the NIH or the Federal Government. CONCLUSIONS: (1) Taken as a whole, the available evidence does not support use of inhaled nitric oxide in early routine, early rescue, or later rescue regimens in the care of premature infants <34 weeks gestation who require respiratory support. (2) There are rare clinical situations, including pulmonary hypertension or hypoplasia, that have been inadequately studied in which inhaled nitric oxide may have benefit in infants <34 weeks gestation. In such situations, clinicians should communicate with families regarding the current evidence on its risks and benefits as well as remaining uncertainties. (3) Basic research and animal studies have contributed to important understandings of inhaled nitric oxide benefits on lung development and function in infants at high risk of bronchopulmonary dysplasia. These promising results have only partly been realized in clinical trials of inhaled nitric oxide treatment in premature infants. Future research should seek to understand this gap. (4) Predefined subgroup and post hoc analyses of previous trials showing potential benefit of inhaled nitric oxide have generated hypotheses for future research for clinical trials. Prior strategies shown to be ineffective are discouraged unless new evidence emerges. The positive results of one multicenter trial, which was characterized by later timing, higher dose, and longer duration of treatment, require confirmation. Future trials should attempt to quantify the individual effects of each of these treatment-related variables (timing, dose, and duration), ideally by randomizing them separately. (5) Based on assessment of currently available data, hospitals, clinicians, and the pharmaceutical industry should avoid marketing inhaled nitric oxide for premature infants <34 weeks gestation.