Articles: palliative-care.
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Neuro-oncology practice · Dec 2020
Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats.
Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. ⋯ In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.
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Palliat Support Care · Dec 2020
ReviewDignity-conserving care for persons with palliative care needs - identifying outcomes studied in research: An integrative review.
With people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized. ⋯ The results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.
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To deliver optimal palliative care, a Care Pathway for Primary Palliative Care (CPPPC) was developed. This CPPPC was implemented by general practitioners (GPs) in territories of five Belgian palliative care networks (2014-2016). Belgian doctors have much therapeutic freedom, and do not commonly follow guidelines. ⋯ Palliative care frameworks which help GPs to deliver 'tailor-made' care have more chance to be adopted than strict protocols. GPs should be given education for bad news breaking. Palliative care and advance care planning practices differ locally: guideline dissemination plans should respect these local differences.
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Pulmonary arterial hypertension (PAH) is a progressive disease associated with significant morbidity and mortality. Despite the negative impact of PAH on quality of life and survival, data on use of specialty palliative care services (PCS) is scarce. ⋯ The inpatient use of PCS in patients with PAH is low, but has been increasing over recent years. Despite increased PCS use over time, patient- and hospital-specific disparities in PCS use continue. Further studies evaluating these disparities and the role of PCS in the comprehensive care of PAH patients are warranted.
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High-quality, personalised palliative care should be available to all, but timely recognition of end of life may be a barrier to end-of-life care for older people. ⋯ End-of-life recognition in primary care appears to occur near to death and for only a minority of people aged ≥75 years. The findings suggest that older people's deaths may not be anticipated by health professionals, compromising equitable access to palliative care.