Journal of pain and symptom management
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J Pain Symptom Manage · Jun 2022
Engaging African American family caregivers in developing a culturally-responsive interview guide: A multiphase process and approach.
Qualitatively eliciting historically marginalized populations' beliefs, values, and preferences is critical to capturing information that authentically characterizes their experiences and can be used to develop culturally-responsive interventions. Eliciting these rich perspectives requires researchers to have highly effective qualitative interviewing guides, which can be optimized through community engagement. ⋯ The purpose of this article is to provide a series of steps, each supported by a case example from our work with African American family caregivers, for developing an interview guide through community engagement. We conclude by highlighting how involving historically marginalized community members in these early stages of research study development can build trust, research partnerships, and acknowledge their contribution to the development of new knowledge.
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J Pain Symptom Manage · Jun 2022
Evolution of Investigating Informed Assent Discussions about CPR in Seriously Ill Patients.
Outcomes after cardiopulmonary resuscitation (CPR) remain poor. We have spent 10 years investigating an "informed assent" (IA) approach to discussing CPR with chronically ill patients/families. IA is a discussion framework whereby patients extremely unlikely to benefit from CPR are informed that unless they disagree, CPR will not be performed because it will not help achieve their goals, thus removing the burden of decision-making from the patient/family, while they retain an opportunity to disagree. ⋯ IA is a feasible and reasonable approach to CPR discussions in selected patient populations.
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J Pain Symptom Manage · Jun 2022
Palliative Care, Patient-Reported Measures, and Outcomes in Hospitalized Patients with Cirrhosis.
Studies of palliative care (PC) in hospitalized patients with cirrhosis have been retrospective, with limited evaluation of patient-reported measures and outcomes. ⋯ PC occurs infrequently and late in those with more severe liver disease and functional impairment. PC may be associated with reduction in utilization and greater completion of advanced directives. Randomized trials are needed to evaluate PC for this population.
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J Pain Symptom Manage · Jun 2022
Observational StudyPatient-reported outcomes during checkpoint inhibition: insight into symptom burden in daily clinical practice.
While praised for inducing durable anti-tumour responses, immune checkpoint inhibitors (ICI) also cause immune-related adverse events (irAEs) that can vary in severity and affect health-related quality of life (HRQL). ⋯ These data illustrate that ICI-treatment is generally well tolerated. However, especially the number of clinically relevant symptoms can impact patients wellbeing. Systematic use of an ICI-tailored PROM could create a window to discuss symptoms in a structured way which may promote personalized care during treatment.
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Journals like the JPSM are part of the system of gatekeepers to the academic literature that defines and represents our field. This paper explores how the JPSM leadership, staff and editorial board can design, implement, and foster active antiracist ideas and practice at the individual and system level, focused on an examination of who is represented across the organization, reflective practice on individual attitudes and beliefs, and policy analysis and changes. We explore the current and historical context in the United States that makes this approach foundational to the work of addressing and dismantling systemic racism. ⋯ While this paper focuses on discrete actions the JPSM can undertake, it also serves as an invitation to the field at large to commit to the daily practice of antiracism. We do not promote ourselves as experts, only as individuals interested in and committed to antiracism and invite our colleagues to correct, edit, and build upon our suggestions. We hope our proposed approach helps our field to address all forms of oppression, including those due to gender, sexual orientation, socioeconomic status, and profession.