Journal of pain and symptom management
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J Pain Symptom Manage · Oct 2020
Healing the hearts of bereaved parents: Impact of legacy artwork on grief in pediatric oncology.
Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention. ⋯ Participating in legacy artwork may result in self-reported positive outcomes for bereaved parents before and after their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.
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J Pain Symptom Manage · Oct 2020
Parent Perceptions of Team-Delivered Care for Children with Advanced Cancer: A report from the PediQUEST study.
Childhood cancer care is delivered by interprofessional health care teams; however, little is known about how parents perceive overall team-delivered care (TDC). ⋯ Among parents of children with advanced cancer, more than one-third report less-than-excellent TDC. In addition, less than half report excellent teamwork, and ratings of care rendered by individual clinicians are highly variable. Findings suggest that interventions are needed to enhance interprofessional teamwork in the care of children with advanced cancer.
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J Pain Symptom Manage · Oct 2020
Observational StudyIMPACT OF RENAL SUPPORTIVE CARE ON SYMPTOM BURDEN IN DIALYSIS PATIENTS: A PROSPECTIVE OBSERVATIONAL COHORT STUDY.
Symptom burden is a strong predictor of reduced health-related quality of life and survival in patients with end-stage kidney disease. Renal supportive care (RSC) is a comprehensive approach shown to benefit symptoms in nondialysis conservatively managed patients, although its role in dialysis patients has not been reported. ⋯ RSC intervention that focuses on symptom control and patient-centered care is associated with improved total and individual symptom burden in dialysis patients. This supports a role for RSC as a management adjunct in these patients.
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J Pain Symptom Manage · Oct 2020
Developing Unique Insights from Narrative Responses to Bereaved Family Surveys.
Although bereaved family surveys (BFS) are routinely used quantitatively for quality assessment, open-ended and narrative responses are rarely systematically analyzed. Analysis of narrative responses may identify opportunities for improving end-of-life (EOL) care delivery. ⋯ Systematic analysis of narrative survey data yields unique findings not routinely available through quantitative data collection and analysis. Organizations may benefit from the collection and regular analysis of narrative survey responses, which facilitate identification of needed improvements in palliative and EOL care that may improve the overall experiences for patients and families.
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J Pain Symptom Manage · Oct 2020
Usage Patterns of a Web-Based Palliative Care Content Platform (PalliCOVID) during the COVID-19 Pandemic.
The COVID-19 pandemic has highlighted the essential role of palliative care to support the delivery of compassionate, goal-concordant patient care. We created the Web-based application, PalliCOVID (https://pallicovid.app/), in April 2020 to provide all clinicians with convenient access to palliative care resources and support. PalliCOVID features evidence-based clinical guidelines, educational content, and institutional protocols related to palliative care for COVID-19 patients. It is a publicly available resource accessible from any mobile device or desktop computer that provides clinicians with access to palliative care guidance across a variety of care settings, including the emergency department, hospital ward, intensive care unit, and primary care practice. ⋯ PalliCOVID is one example of a scalable digital health solution that can bring palliative care resources to frontline clinicians. Analysis of PalliCOVID usage patterns has the potential to inform the improvement of the platform to better meet the needs of its user base and guide future dissemination strategies. The quantitative data presented here, although informative about user behavior, should be supplemented with future qualitative research to further define the impact of this tool and extend our ability to deliver clinical care that is compassionate, rational, and well-aligned with patients' values and goals.