Journal of palliative medicine
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Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. ⋯ Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.
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Randomized Controlled Trial
Impact of Animal-Assisted Interaction on Anxiety in Children With Advanced Cancer and Their Caregivers.
Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) incorporates animals into patient care in a structured manner for the purpose of therapeutic benefit. ⋯ The difference in initial STAI State anxiety scores for caregivers may indicate a positive effect of AAI in reducing anxiety surrounding appointments through anticipation of seeing a therapy dog. Conclusion: Further research is needed to determine the effectiveness of AAI in pediatric patients with advanced cancer and their caregivers, but results are promising that participation in AAI may lessen caregiver anxiety. Clinical Trial Registration Number is: NCT03765099.
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Background: The Functional Assessment of Cancer Therapy-General (FACT-G) is a widely used quality-of-life measure. However, no studies have examined the FACT-G among patients with life-limiting illnesses who present to emergency departments (EDs). Objective: The goal of this study was to examine the psychometric properties of the FACT-G among patients with life-limiting illnesses who present to EDs in the United States. ⋯ The six-factor structure comprised the physical, emotional, work and daily activities-related functional well-being, and the family and friends-related social well-being domains. Conclusions: The FACT-G is a reliable measure of health-related quality of life among patients with life-limiting illnesses who present to the ED. Clinical Trial Registration: NCT03325985.
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Background: Hospice and palliative medicine is important in the education of pediatric residents. Little is known about if and how residents' learnings during a pediatric palliative care elective fulfill core competencies and Pediatrics subcompetencies as set forth by the Accreditation Council for Graduate Medical Education (ACGME) and published subspecialty competencies for residents in pediatric hospice and palliative medicine (pHPM). Objectives: To evaluate what residents are learning on a four-week pediatric palliative care elective rotation at a single institution and how these learnings fulfill ACGME and pHPM competencies. ⋯ These codes were mapped to all six ACGME core competencies and mapped to most Pediatric subcompetencies with the exception of performing a physical examination, organizing and prioritizing patients, diagnostic evaluation, and community and population health. Codes mapped to most pHPM competencies with the exception of two symptom-based competencies, malignant bowel obstruction and severe fatigue. Conclusions: Residents' written reflections following a pediatric palliative care elective rotation demonstrated robust learnings that fulfill many core, specialty, and subspecialty competencies, particularly those that relate to patient- and family-centered care, communication, professionalism, and systems-based practice.