Despite existing hospital policies and a pain consult team, significant room for improvement in pain management was identified. A hospital-wide, 3-year Lean quality improvement initiative on reducing pain was commenced as a result of this survey.
This is the first North American study to assess outcomes among children with cancer who received concurrent oncology and palliative home care compared with those who received oncology care alone. Symptom distress experiences were similar in groups. However, children enrolled in a PPC home care program appear to have improved quality of life and are more likely to die at home.
Context
The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings.
Objectives
To describe: (1) the prevalence of risky health-behaviors, psychological distress, and social support among bereaved siblings; (2) potentially modifiable factors associated with poor outcomes.
Methods
Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were ≥16 years-old and their parents had enrolled in one of three prior studies about caring for children with cancer at end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health-behaviors, psychological distress, and social support).
Results
Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD=7.8). Anxiety, depression, and illicit substance use increased during the year following their brother/sister's death, but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say “goodbye,” and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (p<0.001-0.031). Almost all siblings reported their loss still affected them; half stated the experience impacted current educational and career goals.
Conclusion
How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year following sibling death may mitigate poor long-term outcomes.
Enrollment in home-based PPC/hospice was associated with lower hospital and ER LOS and total hospital charges as compared with the period prior to enrollment for children with noncancer diagnoses.
The integration of a PPC team was associated with fewer diagnostic/monitoring procedures and improved pain management documentation in this study of 114 children who died as inpatients.
Context. Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation. Objectives. Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics. Methods. Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010e2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children. Results. The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future ''Trainers,'' thus becoming ''Master Facilitators.'' Between 2012eMay 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions. Conclusion. EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
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