Palliative medicine
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Palliative medicine · Apr 2023
ReviewSerious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review.
In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care. ⋯ Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.
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Palliative medicine · Apr 2023
ReviewPalliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review.
Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons. ⋯ The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.
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Palliative medicine · Apr 2023
ReviewPalliative care for people who use drugs during communicable disease epidemics and pandemics: A scoping review on access, policies, and programs and guidelines.
People who use drugs with life-limiting illnesses experience substantial barriers to accessing palliative care. Demand for palliative care is expected to increase during communicable disease epidemics and pandemics. Understanding how epidemics and pandemics affect palliative care for people who use drugs is important from a service delivery perspective and for reducing population health inequities. ⋯ Our findings underscore the need for further research about how best to provide palliative care for people who use drugs during epidemics and pandemics. We suggest four ways that health systems can be better prepared to help alleviate the structural barriers that limit access as well as support the provision of high-quality palliative care during future epidemics and pandemics.
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Palliative medicine · Apr 2023
If not home, where? Implementing an innovative model of care as an alternative place of care & death for patients living in an area of high socio-economic deprivation. Short-report on opening a long-term palliative care unit.
Healthcare professionals and policy makers often view home as the most appropriate place of care and death for patients. However, this makes assumptions about what home is like and does not account for high levels of complexity experienced by patients from areas of high socioeconomic deprivation. Alternative models of care should be explored to provide equitable care for this patient group. ⋯ We suggest that this model has been a valuable asset in providing an alternative place to home, enabling patients to receive high-quality care towards end of life. Further research is needed to hear directly from patients about their experiences.
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Palliative medicine · Apr 2023
The viability and appropriateness of using visual methods in end of life research to foreground the experiences of people affected by financial hardship and deprivation.
Visual methods have been used extensively in social research to explore people's experiences of structural disadvantage. This indicates that they may provide a useful research approach to understanding equity-related concerns within palliative care. However, little has been published regarding the use of visual methods with people at the end of life. ⋯ To successfully use visual methods, researchers need to invest significant time and resource in building a strong rapport with participants. There are also key ethical, practical and representational challenges to consider. A participatory framework should be adopted which ensures agency for participants in terms of image creation and public dissemination. Participants reported value in using visual methods in terms of legacy building and self-representation. Using photovoice (insider's view) and professional photography (outsider's view) together offered complementary perspectives, enabling a rich layering of stories and meaning. Our findings indicate visual methods can illuminate aspects of the end of life experience not captured by other research methods.