Journal of palliative medicine
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Introduction: A growing number of patients with serious illness who would benefit from palliative care are part of ethnoracial minority groups. Nevertheless, large disparities in provision of palliative services exist for minoritized populations. Furthermore, there is a relative dearth of palliative care research focused on minority groups and how best to provide high-quality, culturally tailored palliative care. ⋯ We deemed nine articles as having low risk of bias and four as having high risk of bias. Discussion: Commonly used methodologic approaches for clinical trials in underrepresented minority populations included the following: the use of written and visual materials that were no higher than a sixth-grade reading level, the use of patient and lay health navigators, bilingual and multicultural study staff and study materials, race-concordant staff, the option of in-person and virtual visits that accommodated the patient and family's schedule, recruitment from faith communities, and the use of community-engaged research principles. Future palliative care clinical trials should expand on the strategies described in this article, adopt effective strategies currently used in nonpalliative care interventions, and innovate around the principles of community-engaged research.
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The Palliative Care Research Cooperative Group (PCRC) formed to lead, catalyze, and empower a community of scientists to build an evidence base to ensure high-quality care and optimal well-being for persons with serious illness and their caregivers. The PCRC grew to 630 members representing 220 distinct sites. ⋯ The PCRC supported the submission of extramural research applications and fostered community through annual meetings, special interest groups, newsletters, and its website. The PCRC filled an important void in serious illness science and set the stage for the next era of advancing serious illness research.
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Multicenter Study
Clinician Perspectives on Virtual Specialty Palliative Care for Patients With Advanced Illnesses.
Background: Patients with serious illnesses have unmet symptom and psychosocial needs. Specialty palliative care could address many of these needs; however, access varies by geography and health system. Virtual visits and automated referrals could increase access and lead to improved quality of life, health outcomes, and patient-centered care for patients with serious illness. ⋯ Many respondents were supportive of virtual palliative care, particularly for those who may have difficulty accessing physician offices, but most respondents felt that such care should only be provided after an initial in-person consultation where clinicians can meet face-to-face with patients. Conclusion: Clinicians believe that automated referrals and virtual palliative care could increase access to the benefits of specialty palliative care. However, virtual palliative care models should give attention to iterative communication with primary clinicians and the perceived need for an initial in-person visit.
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Background: Long-term neurological conditions include multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. National and international guidelines recommend a palliative approach for advancing neurological disease, but there is little research describing and comparing the palliative care needs of these patients side by side. Objective: The aim of this study was to describe and compare the symptom burden and psychological distress of patients with multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. ⋯ It is unclear how to address these needs. The answer likely lies in a collaborative approach between neurology, palliative care, psychology, and specialized allied health professionals. Future work should focus on investigating this.
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Randomized Controlled Trial
Family Caregiver Communication and Perceptions of Involvement in Hospice Care.
Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. ⋯ Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well.