Journal of palliative medicine
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Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. ⋯ The evaluation of vignettes according to the clinical experience of the experts represented the gold standard against which the validity of the ACCAPED scale was tested by groups with different levels of experience (experts, pediatricians, and health care providers (HCPs) not involved in PPC). Results: Results show a very high concordance between the evaluation of the vignettes through the ACCAPED scale and the evaluation by the clinical experience for experts in PPC and pediatricians. A less favorable grade of concordance has been recorded for HCPs not involved in PPC, suggesting that educational efforts to improve basic knowledge of PPC within the medical community are needed. Conclusions: Overall, this study suggests that the ACCAPED scale is a useful tool to improve rationalization of resources and eligibility criteria for PPC.
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Background: This study is the first to document knowledge-base and knowledge attitudes about cultural competence and religious literacy in hospice and palliative care in Cyprus. Objective: The aim of this article is to investigate and document the knowledge-base and attitudes toward advancing knowledge and expertise of hospice and palliative care professionals in Cyprus. Measurements: A cross-sectional self-administered online survey, which reached 80 hospice and palliative care professionals employed in the sector, was used. The response rate was 64%, which increases the generalizability of the results. ⋯ The study was approved by the Ethics Committee of the Frederick University in Cyprus (EEBK EP 2019.01.28). Results: This study shows that self-awareness, reflexivity, and respect toward the other and other people's culture and religion are associated with the current knowledge-base of the professionals, as well as attitudes toward future learning opportunities, lifelong learning, and initiating learning between professionals and agencies. The results present three themes: knowledge development, knowledge empowerment, and knowledge exchange. Conclusions: Professionals and organizations need to nurture and promote lifelong learning, supervision, and enable individual practitioners to engage with activities that will enhance their self-awareness, reflexivity, and attitude toward the unique identities of others.
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Palliative care is a values-driven approach for providing holistic care for individuals and their families enduring serious life-limiting illness. Despite its proven benefits, access and acceptance is not uniform across society. ⋯ The COVID-19 pandemic and recent social justice movements in the United States, and around the world, have led to an important moment in time for the palliative care community to step back and consider opportunities for expansion and growth. This article reviews traditional models of palliative care delivery and outlines a modified conceptual framework to support researchers, clinicians, and staff in evaluating priorities for ensuring individualized patient needs are addressed from a position of equity, to create an actionable path forward.
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Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty. Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role. Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child. Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.