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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 [...]

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 [...]