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
Utilization and Delivery of Specialty Palliative Care in the ICU: Insights from the Palliative Care Quality Network.
Palliative care (PC) benefits critically ill patients but remains underutilized. Important to developing interventions to overcome barriers to PC in the ICU and address PC needs of ICU patients is to understand how, when, and for which patients PC is provided in the ICU. ⋯ ICU patients receiving PC consultation are more likely to have non-cancer diagnoses and less likely able to communicate. Although symptom management and GOC are standard parts of ICU care, specialty PC in the ICU is often engaged for these issues and results in improved symptoms, suggesting routine interventions and consultation targeting these needs could improve care.
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J Pain Symptom Manage · Jun 2022
The Lived Experience of Physical Separation for Hospice Patients and Families amid COVID-19.
Many hospice patients were physically separated from family members and healthcare professionals during the early COVID-19 pandemic. ⋯ Inclusive, innovative connection strategies are needed to ensure that high-quality end-of-life care is provided to hospice patients and their family caregivers when physical presence must be limited.
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J Pain Symptom Manage · Jun 2022
Sufficient death preparedness correlates to better mental health, quality of life, and EOL care.
Patients can prepare for end of life and their forthcoming death to enhance the quality of dying. ⋯ Conjoint cognitive and emotional preparedness for death is associated with cancer patients' lower psychological distress, better QOL, reduced anti-cancer therapy, and increased hospice-care utilization. Facilitating accurate prognostic awareness and emotional preparedness for death is justified when consistent with patient circumstances and preferences.
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J Pain Symptom Manage · Jun 2022
Bereaved Parent Perspectives and Recommendations on Best Practices for Legacy Interventions.
Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well described, and best practices for offering and creating legacy interventions remain poorly understood. ⋯ Bereaved parents emphasized the meaningfulness of legacy-building activities and the need for an individualized approach when offering these interventions. Future research should explore the perspectives and recommendations of patients and siblings on legacy activities.