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Children with serious, complex medical or life-threatening conditions and their families often fail to receive effective, consistent, timely, and competent care that meets their physical, emotional, and spiritual needs. Enhancing both basic education and advanced skills in pediatric palliative and end-of-life care education is recommended so that health care providers will enter practice with some form of formal preparation. In this quantitative descriptive study, we used the End-of-Life Professional Caregiver Survey to assess unmet palliative and end-of-life educational needs of pediatric health care providers in the state of Connecticut. Participants who received palliative care education in the past 5 years had higher mean scores on all 3 factors of the End-of-Life Professional Caregiver Survey, which may reflect the evolvement and depth of current pediatric palliative care education. Future palliative educational programs for pediatric providers in Connecticut should include sharing pediatric palliative care principles and national guidelines, describing services provided by pediatric hospice and timing of referral, developing systems to ensure continuity of care crossing all settings, addressing request for assisted suicide, meeting needs of staff and providers caring for the dying child (self-care), and describing cultural and ethical values specific to diverse populations in Connecticut. [ABSTRACT FROM AUTHOR]

Objective The aim of the study is to determine the perceptions of end-of-life care practices and experience with infants who have died in the NICU among neonatologists, advanced practitioners, nurses, and parents, and also to determine perceived areas for improvement and the perceived value of a palliative care team. Study Design This descriptive, exploratory cross-sectional study using surveys consisting of 7-point Likert scales and free response comments was sent to all neonatologists (n = 14), advanced practitioners (n = 40), and nurses (n = 184) at Connecticut Children's Medical Center's neonatal intensive care units (NICUs) in April 2013 and to all parents whose infants died in these NICUs from July 1, 2011, to December 31, 2012 (n = 28). Results The response rates were 64.3% for physicians; 50.0% for practitioners; 40.8% for nurses; and 30.4% for parents. Most providers reported they feel comfortable delivering end-of-life care. Bereavement support, debriefing/closure conferences, and education did not occur routinely. Families stressed the importance of memory making and bereavement/follow-up. Consistent themes of free responses includemodalities for improving end-of-life care, inconsistency of care delivery among providers, and the importance of memory making and follow-up. Conclusion End-of-life experiences in the NICU were perceived as variable and end-oflife practices were, at times, perceived as inconsistent among providers. There are areas for improvement, and participants reported that a formalized palliative care teamcould help. Families desire memory making, follow-up, and bereavement support. [ABSTRACT FROM AUTHOR]

Objectives: A lack of focus on variation in engagement among cancer populations of differing developmental stages led us to examine the associations between patient engagement, the patient-provider relationship, cognitive development, readiness to transition to adulthood (transitional readiness) and perceived quality of care.Methods: A sample of 101 adolescent cancer patients (diagnosed 10-20 years) completed survey items concerning patient engagement, dimensions of the patient-provider relationship, cognitive development, transitional readiness, and demographic characteristics using an iPad/tablet during a routine clinic visit.Results: Patient engagement was not significantly associated with perceived quality of care (b = .02, 95% CI: -0.06, 0.11). Instead, adolescents with providers that supported their independence (b = .34, 95% CI: 0.17, 0.52) were significantly more likely to perceive higher quality care.Conclusion: Supportive patient-provider relationships are an integral part of adolescents' perceptions of quality of care. Adolescents are still gaining important skills for navigating the medical system, and the patient-provider relationship may provide an important scaffolding relationship to help adolescents build independence in their treatment experience.Practice Implications: Identifying potential mechanisms through which adolescents can provide their opinion, ask questions, and participate in their treatment plan will help in supporting adolescent independence and improve quality of care. [ABSTRACT FROM AUTHOR]