Palliative medicine
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Palliative medicine · Jan 2021
Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.
Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. ⋯ Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.
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Palliative medicine · Jan 2021
ReviewThe support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review.
Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. ⋯ Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.
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Palliative medicine · Jan 2021
Randomized Controlled TrialDo family meetings for hospitalised palliative care patients improve outcomes and reduce health care costs? A cluster randomised trial.
Family meetings facilitate the exploration of issues and goals of care however, there has been minimal research to determine the benefits and cost implications. ⋯ Family meetings may be helpful in reducing family caregiver distress and enhancing their preparedness for the caregiving role and it appears they may be conducted without increased hospital health utilisation impacts; although opportunity costs need to be considered in order to routinely offer these as a standardised intervention. Additional health economic examination is also advocated to comprehensively understand the cost-benefit implications.
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Palliative medicine · Jan 2021
Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review.
The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. ⋯ Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.
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Palliative medicine · Jan 2021
Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare.
Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. ⋯ Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.