Title: Exploring gender equity in access to Marie Curie services in the UK
Funder: Marie Curie

Abstract: Background: Existing international research has shown that gender influences almost all aspects of end-of-life preferences, experiences, and care . This project will offer insight into whether gender inequality and inequity exist in relation to place of care and place of death within Marie Curie services. Aims: · To explore differences in place of care and death for people of different genders within Marie Curie hospice, outpatient and nursing services in the four nations, as part of a service evaluation. · To explore potential views of Marie Curie staff from Wales and Scotland regarding any observed gender inequality and inequity in Wales and Scotland Design: Mixed methods study Data collection: Phase 1: Marie Curie service evaluation. We will explore within Marie Curie data (where reported), preferred and achieved place of care and place of death by gender across the four nations. Phase 2: Online focus groups with Marie Curie hospice teams and community nursing services in Wales and Scotland to gather qualitative data regarding gender differences in preferred and achieved place of care and death. Data analysis: A narrative synthesis of available Marie Curie data reporting gender identity will be completed. Where possible, statistical analyses will determine any effects of difference between gender identity and service use. Qualitative focus group data will be transcribed and analysed using thematic analysis in NVIVO. Implications: The evidence from this research will give us insight into whether differences in gender exist when it comes to Marie Curie patients’ preferred and achieved place of care and place of death. This study will analyse quantitative data from across the four nations, with additional qualitative data provided for Scotland and Wales. It is anticipated that the findings could inform internal Marie Curie data collection and analysis to help identify whether gender-related inequalities and inequities exist within our services. The evidence will also be used to support strategic policy development to help shape national parliament policy agendas to ensure equal access and experience of palliative and end of life care across the UK, regardless of gender.

Lay abstract: Background: Despite women living for longer, those affected by a terminal illness can face disproportionate challenges compared to men in engaging with the palliative and end of life care they need. International evidence shows that this can affect some women’s preferences and experiences at end of life, including in relation to their place of care and place of death. To ensure that more people can achieve a death which reflects what’s most important to them, we must work to ensure that all genders can be cared for and die in a place where they choose. Aim: To explore existing Marie Curie data to see whether there are differences in gender in preferred and actual place of care and place of death. Method: Phase 1) An analysis of existing data held by Marie Curie hospice inpatient, outpatient and nursing services across the 4 nations. Phase 2) Focus groups with staff from Marie Curie services in Scotland and Wales to explore potential views regarding gender differences in preferred and achieved place of care and death. Outputs: This research will identify what information is currently recorded and available regarding preferred and actual place of care and death in relation to gender. It will help us to: ● Lobby for change – by working with political stakeholders, civil servants and local commissioners to ensure that gender equality is embedded in new and existing palliative care public policy. ● Thought leadership –driving awareness and understanding around gender equality in palliative and end of life care. ● Informing practice – partnership working to explore opportunities for changes in internal and external palliative care service models which reflect gender specific needs.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE