Palliative medicine
-
Palliative medicine · Apr 2023
ReviewResearching minoritised communities in palliative care: An agenda for change.
Palliative care access, experiences and outcomes of care disadvantage those from ethnically diverse, Indigenous, First nation and First people communities. Research into this field of inquiry raises unique theoretical, methodological, and moral issues. Without the critical reflection of methods of study and reporting of findings, researchers may inadvertently compromise their contribution to reducing injustices and perpetuating racism. ⋯ Based on the findings of this review palliative care research must reflect on and justify the classification of minoritised communities, explore and understand intersectionality, optimise data quality, decolonise research teams and methods, and focus on reducing inequities to level up end-of-life care experiences and outcomes. Palliative care research must be forthright in explicitly indentifying instances of structural and systemic racism in palliative care research and engaging in non-judgemental debate on changes required.
-
Palliative medicine · Apr 2023
Creating 'safe spaces': A qualitative study to explore enablers and barriers to culturally safe end-of-life care.
Internationally, efforts are being made to promote equity in palliative and end-of-life care for Indigenous peoples. There is a need to better understand the experiences of Indigenous service users and staff. ⋯ Our findings indicate that efforts to support equitable palliative care for Indigenous people should recognise, and support, the existing efforts of health practitioners from these communities. Colleagues from non-Indigenous populations can support this work in a range of ways. Cultural safety must be appropriately resourced and embedded within health systems if aspirations of equitable palliative and end-of-life care are to be realised.
-
Palliative medicine · Apr 2023
'Sadly I think we are sort of still quite white, middle-class really' - Inequities in access to bereavement support: Findings from a mixed methods study.
Voluntary and community sector bereavement services are central to bereavement support in the UK. ⋯ Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research.
-
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.
-
Palliative medicine · Apr 2023
The association between socioeconomic position and the symptoms and concerns of hospital inpatients seen by specialist palliative care: Analysis of routinely collected patient data.
Understanding how socioeconomic position influences the symptoms and concerns of patients approaching the end of life is important for planning more equitable care. Data on this relationship is lacking, particularly for patients with non-cancer conditions. ⋯ Targetting resources to address practical and communication concerns could be a strategy to reduce inequalities. Further research in different hospitals and across different settings using patient centred outcome measures is needed to examine inequalities.