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.

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.

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.

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.

New and lingering controversies in pediatric end-of-life care.

OBJECTIVES: Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study's objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. METHODS: Three children's hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. RESULTS: A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, "At times, I have acted against my conscience in providing treatment to children in my care." For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, approximately 20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, "Sometimes I feel we are saving children who should not be saved," as agreed with the statement, "Sometimes I feel we give up on children too soon." However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, "Sometimes I feel the treatments I offer children are overly burdensome." Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92-98%, depending on specialty) and nurses (range: 83-85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. CONCLUSIONS: There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians' regard for the dead-donor rule.