Journal of pain and symptom management
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J Pain Symptom Manage · Sep 2024
Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository.
Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. ⋯ Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.
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J Pain Symptom Manage · Sep 2024
Learning to Trust Yourself: Decision-Making Skills among Parents of Children with Medical Complexity.
Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that facilitate this engagement. ⋯ Parents of children with medical complexity change how they approach decision making over time as they acquire relevant skills. These findings can inform the development of interventions to support skill-building among new caregivers.
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J Pain Symptom Manage · Sep 2024
Implementing the Serious Illness Care Program in Safety Net Health Systems: a qualitative study.
Interventions to improve the quality of care for people affected by serious illness commonly fail to reach patients from marginalized and underserved communities, which include those characterized by racialized or indigenous identity, sexual and gender minority status, and rural living. Interventions to improve care through serious illness conversations have demonstrated benefit, but little is known about their implementation in health systems that predominantly serve these patient groups. ⋯ Health systems that provide care to underserved and marginalized communities face unique challenges implementing the Serious Illness Care Program. They also possess assets, some unique to these settings, that support program adoption. Findings suggest that implementation of similar programs in low-resource healthcare settings may help address unmet needs among marginalized populations.
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J Pain Symptom Manage · Sep 2024
Improving Goal-Concordant Care in Intensive Care Unit Admissions from the Emergency Department in a Comprehensive Cancer Center.
As patients approach the end of life, discussion of their treatment goals is essential to avoid unnecessary suffering and deliver care in a manner consistent with their overall values. ⋯ Through our multipronged approach, we significantly improved the rates of ACP documentation among providers admitting patients from the ED to the ICU.
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J Pain Symptom Manage · Sep 2024
"Life…Gets Turned Upside-Down…" Opportunities to Improve Palliative Care for High-Grade Glioma.
Early palliative care referral is recommended broadly in oncology. Yet, few patients with high-grade gliomas (HGG) - highly aggressive brain tumors - receive specialty palliative care consultation. ⋯ Patients with HGG have unique palliative care needs that affect palliative care delivery across care domains. Bidirectional education, enhanced collaboration, and consensus guidelines may help overcome barriers to specialty palliative care referral.