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Keywords: Patient- and family-centered care, family-centered care, Patient and Family Advisory Councils., During the second half of the 20th century, around the time when Pediatric Nursing was first published, patient- and family-centered care (PFCC) gained visibility in health care (American Academy of [...]

Until recently, children have not been central in news of the COVID-19 pandemic; however, the pandemic has certainly impacted them. Recent studies suggest that both parental and children's mental health has worsened since the onset of the pandemic. These changes are most pronounced in families facing more hardship, and children already at high risk for mental health concerns are even more vulnerable as a result of the pandemic. Children's hospitals have responded in varied ways to these concerns, providing telehealth mental health visits, offering webinars on pertinent topics, and adding supportive content on their websites. This article features specific programs of Children's Mercy with hospitals in both Kansas City, MO, and Overland Park, KS, as well as several other institutions, and outlines resources for nurses to share with families. Key Words: COVID-19, pandemic, infection control, mental health., According to a policy brief published by the United Nations Sustainable Development Group (2020) in April 2020: 'Children are not the face of this pandemic. But they risk being among [...]

Bainter, J., Fry, M., Miller, B., Miller, T., Nyberg, A., O'Dell, A., Shaffer, G., & Vernon, L. (2020). Family presence in the NICU: Constraints and opportunities in the COVID-19 era. Pediatric Nursing, 46(5), 256-259. With the advent of COVID-19, many hospitals changed their 'visiting' policies to protect staff and patients. Rather than welcoming families as partners in care, family presence was prohibited or sharply limited. The authors of this article, Family Faculty with the Vermont Oxford Network, describe the difficult impact these changes had on families with babies in NICUs--both on participation in care and also on integration of the family 'voice' at the policy level. The authors urge that the core concepts of patient- and family-centered care provide the foundation for future changes in policy as the pandemic continues. Key Words: Family-centered care; patient- and family-centered care, neonatal intensive care, NICU, family presence, parent presence, COVID-19., The sudden onset of the COVID-19 pandemic has changed all of our lives beyond measure. One of the many aspects of life impacted by COVID-19 has been health care delivery. [...]

Patient and family advisors can have a large and meaningful impact on a hospital system. The Children's Mercy Hospital is showcased here as both an early adopter of the use of Patient and Family Advisers (PFAs) and other varied forms of family engagement. In 1999, the first Teen Advisory Board was formed. In 2003, a Family Advisory Board was instituted to partner with high-level hospital administrators to focus on improving the quality, safety, and experience of care on a system-wide level. Family Advisory Board members also began volunteering on hospital committees to provide patient and family perspectives regarding the planning and delivery of care. This article is authored by two mothers of hospital patients, who were hired in 2008 as 'parents on staff,' creating a Family-Centered Care Department, which recently merged with the Patient Experience Department to form a new Patient and Family Engagement Department. Roles for parents in the hospital system have expanded over time, including the hiring of three more 'parents on staff,' the formation of 15 Patient Family Advisory Councils organized around varied populations and diagnoses, and PFA participation on the varied Hospital-Acquired Condition committees, providing key end user input into quality and safety decisions. Key Words: Patient- and family-centered care, patient and family engagement, PFAC, PFA, advisors., No parent chooses to have a sick child. When a child is born, our hopes and dreams include images of a happy childhood, playdates with friends, first day of school [...]

The number of children with complex medical conditions in the United States is estimated at 400,000 (Berry, 2015) to 3 million (Vestal, 2015), the wide range due to varying definitions [...]

Over 400,000 children are in foster care in the United States, and more than 100,000 of them are waiting to be adopted. Yet many will age out of foster care into adulthood without an adoptive family. Teens and young adults aging out of foster care, even those with preparation and training for the transition, often do not fare well in young adulthood. Many face challenges in areas of education, employment, homelessness, finances, the criminal justice system, and meeting health and mental healthcare needs. Research demonstrates what only makes sense: teens with tangible support from meaningful adult relationships fare better than those without. This article describes an innovative program that connects teens in foster care with supportive adults through social events that can lead to meaningful long-term teen-adult connections - including friendships, mentoring, and even, in some cases, adoption. Pediatric nurses, aware of the challenges these teens face adjusting to adulthood, can begin to explore referral and support options for such teens in their own locales using the resources herein., Almost 428,000 children nationwide are in the United States foster care system (U.S. Department of Health and Human Services [DHHS], 2016). Over one-fourth of these children, approximately 112,000, are waiting [...]

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., This article is the third in a series addressing the critical issue of the transition from pediatric to adult care for young adults with complex chronic conditions. Sharing the invaluable [...]

In March 2020, faced with the overwhelming nature of the COVID-19 pandemic, hospitals, health systems, outpatient settings, and nursing homes felt it was necessary to restrict visitors and family members [...]

COVID-19 and its devastating impact is now sweeping across the United States, as well as the world. Major metropolitan areas are literally 'under siege.' Hospitals and other parts of the [...]

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., Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care (McManus et al., 2013). As health care outcomes improve for children with complex [...]

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., You had direction as a parent. You had direction fighting your child's disease. But after your child's death, you are directionless. (P. Brown, personal communication, June 15, 2012) Each year [...]

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., As two recent articles in 'Family Matters' highlighted (Abraham & Moretz, 2012; Moretz & Abraham, 2012), patient- and family-centered care (PFCC) is not new to the health care field. In [...]

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 Family-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., The Evolution of Family-Centered Practice The Association for the Care of Children's Health formally articulated the elements of family-centered care in 1987 (Shelton, Jeppson, & Johnson, 1987) with the support [...]

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., The term "family-centered" care has its origins almost 30 years ago in the maternity nursing literature (Wiedenbach, 1967). The consumer movement in the 1960s laid the groundwork for this approach, [...]

With changes in delivery of and payment for health care, hospital stays may be shorter and children may be going home sooner and sicker. Therefore, more care may be required at home. Even with access to a variety of services and resources in the community, families of medically fragile or chronically ill children can be overwhelmed and stressed. Relief can be provided to some degree if families creatively mobilize their own personal resources. However, for a variety of reasons, families may find it difficult to do this. While nurses and other health care professionals are accustomed to helping families find professional services and resources in the community, they can also be invaluable before discharge by assisting families with their personal resources - from giving encouragement and motivation to outlining practical planning steps. Pediatric nurses can use guidelines and a checklist to assist families with mobilizing their resources to ease the transition from hospital to home for the whole family., Families awaiting the discharge of a medically fragile or chronically ill child from the hospital face a broad range of practical and emotional life changes. The event may be anticipated [...]

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., * Parents forced to consider all possible donors for their ailing child, even a sibling. * Family relationships stressed and changed by the illness of a child. * Families devastated [...]

As family-centered care has become the 'gold standard' in pediatrics, roles for family members in the health care system have broadened, including involvement in clinician education. This article is excerpted from a new publication, Families as Educators: Guidance for Implementation, which describes the multi-year experience of a national project, the Initiative for Pediatric Palliative Care (IPPC), in fully integrating families as participants in educational retreats. The IPPC experience affirmed the critical role that family members can play in clinician education--and how their involvement can be an impetus for change. After five years of working with more than 300 family members during 21 retreats, IPPC has developed a model for involving families as educators. To help other institutions understand and adapt the model, IPPC's guidance document outlines key steps or components needed to effectively and ethically involve families as educators, as well as barriers, strategies, and other guidance for each of the steps. In this excerpted material, one of these steps is shared with readers., For years, advocates of patient- and family-centered care have emphasized the importance of involving patients and their families in the health care system. A six-part series in this journal in [...]

This article, the fifth of six in a series on roles for family members in family-centered care, focuses on the role of parents as educators of clinicians in the health care system. Two interviews highlight this role. The director of family services at a pediatric hospital, a parent of a child who suffered with a chronic illness, offers suggestions for institutions wanting to further develop this key role. This includes involving patient and family advisors at the "front end" of any initiative or new project; identifying champions (clinical staff, administrators, and patients/family members) for these roles within the institution; preparing family members for the educator role; following-up with thanks and feedback; and tracking successes of projects in which patient and family advisors participate. The father interviewed in this article describes the sense of fulfillment he experiences from teaching health care providers about child and family needs and the emotional side of care. He urges all parents to recognize the important education they can offer professionals when they both ask questions and share about their own child and family., This article is the fifth in this series and will focus on the role of parents as educators of clinicians in the health care system. Two interviews, one with the [...]

This article highlights the role parents can play as advocates for their own children. A mother who is interviewed describes a nurse's support in helping her claim her baby as her own in the midst of the NICU environment and how that claiming led her to become involved in his care and a strong advocate for his needs. She shares advice for parents and health care providers. A physician who is interviewed discusses working with this mother and other parents, and describes ways health care professionals can support parents as advocates., This article is the second in a series highlighting parental roles in family-centered care. In the first article, five categories of parental roles were described: advocacy for one's own children, [...]

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., This two part series of articles presents poignant narratives based on interviews done with two mothers who suffered the worst pain imaginable--the pain of losing a child. Each woman describes [...]

In the United States, consumer interest in and use of complementary and alternative medicine (CAM), including in pediatrics, is growing. Despite the reservations of many conventional practitioners, the multi-billion dollar industry is here to stay. To maintain positive relationships with pediatric patients and their families, health care professionals must acknowledge the reality of CAM, be informed themselves about its various therapies, and encourage open dialogue with patients and families. This article offers background about the current status of CAM, in general, as well as specific information about CAM in pediatrics. The parent/family perspective, a list of suggested questions to help initiate parent/professional discussion about exploration and use of CAM, and a resource list for use by both parents and professionals are provided., A nurse working in a suburban pediatric practice receives a call the day before Thanksgiving from the mother of 3-year-old twins who are suffering from their third cold of the [...]

The experience of having a baby in the neonatal intensive care unit (NICU) is frightening and creates uncertainty for families. Each parent copes with the challenge in his or her own way. Nurses can play an important role in helping parents find their own unique paths to meaningful involvement in caring for their infant by utilizing five frameworks in the assessment and planning process. The frameworks include: (a) family-centered care, (b) a cultural context, (c) loss and grief issues, (d) personal style considerations, and (e) reflections on the caregiver's own value system. The stories of three families illustrate individual coping styles and the application of these frameworks in understanding family coping in the NICU. A list of suggested questions identifying family background and strengths can assist in applying the five frameworks in assessment. A list of areas of potential parental involvement can assist nurses in helping families determine the ways in which they would like to be involved in their infant's care while in the NICU., Lights and the high commotion of technology swirl around us. The air smells of chemicals, I sit on a high, wheeled stool and gaze at the baby under the glare [...]

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!, Happy New Year, 2008! Have any New Year's resolutions? Lose weight, exercise more, take vitamins regularly? Replace the old sofa, clean the basement, repaint the living room? Save money, take [...]

To the Editor: As a pediatric nurse with experience working in both the inpatient and outpatient setting, I was excited to read the article entitled "The Many Roles of Family [...]