Chair: Claire Hepper
a. The development of an instrument to assess diversity responsiveness of research and intervention projects in palliative care
The development of an instrument to assess diversity responsiveness of research and intervention projects in palliative care.
Background: The aging of migrant populations across Europe calls for consideration of their particular needs in palliative care service provision. Studies have shown lower use of palliative care services and higher levels of dissatisfaction with these services amongst older migrants. Migrant patients are furthermore underrepresented in palliative care research, posing drawbacks like the inability to check appropriateness of care innovations.
Aims/purpose: One way to realize responsive palliative care is to address responsiveness in research and intervention projects aiming to improve palliative care. We developed and tested a self-assessment instrument meant to help researchers increase diversity responsiveness of their projects.
Design/approach: We modified the standards for equity in health care for migrants and other vulnerable groups to fit palliative care research and intervention projects. Using consensus method we established a list of twenty-five measures for diversity responsiveness, structured according to different project stages. We pilot tested the instrument in seven research and intervention projects. We observed the self-assessment and interviewed the researchers about the use of the instrument. Transcripts were analyzed using a framework approach.
Results/findings: The use of our instrument raised awareness about the diversity of palliative care patients. It offered a structured way to think about a project’s responsiveness and formulate actions for improvement, e.g. consulting migrant patient representatives about study results. When self-assessment was performed with the project team actions were formulated most effectively. Timely use of the instrument was considered essential for the self-assessment to meaningfully contribute to projects’ diversity responsiveness.
Conclusion and application to PHPC: Our self-assessment instrument helps researchers in palliative care reflect and improve on diversity responsiveness of their research and intervention projects. It thereby helps to engage underrepresented populations in palliative care research and intervention studies to ultimately improve access and quality of palliative care.
b. Hospices working closer together - collaborating as our own unique community
UK Hospices are increasingly becoming involved in the Community Engagement and Development arena and have appointed roles to facilitate this work. The Midlands Region had an established group of workers who were already sharing expertise and experience and established this more formally as a Midlands Regional Hospice Community Engagement Network. Our roles are diverse, sitting in different areas of Hospice but often with the same core values and challenges.
The aim of the network is to develop and share the ways in which we work with Communities to enable a public health approach to death dying and bereavement. Often focused on diverse communities, engagement gives those with no previous contact to hospice services, or regarded as seldom heard, a voice that builds community capacity around death and dying, prompting new proposals shared and supported across the community network
The roles are often isolated and the network gives us an opportunity to support each other and share good practice, bridging the space between Communities and Hospice, breaking down barriers and creating new and diverse opportunities to be a part of our Communities.
We have held two National Conferences- using Arts to enable a Community approach and exploring Public Health and Community Development Approaches and have presented at Hospice UK National Conference
In practical ways we share the lead of each of our quarterly meetings and use WhatsApp and Twitter to communicate and share outside of our meetings
Our shared learning, which involves visiting experts, communities and researchers has led to work with People Experiencing Homelessness, Bereavement Hubs, working with Muslim Communities and more!
We have a shared float at Birmingham Pride this year as the Network has contributed to Hospices working closer together – collaborating as our own unique Community.
c. Hear my voice! A collaborative approach engaging and enabling people with learning disabilities to develop inclusive palliative and end-of-life care
People with a learning disability (LD) are three times more likely to die at a younger age than the overall population (Heslop, Blair, Fleming, et al., 2013). Furthermore, they may experience inadequate end of life care through providers not recognising or considering individual needs (Care Quality Commission, 2016).
LD champions were appointed, to examine how we support more people in the community from this marginalised group.
Aim: Engage with and increase accessibility for people with LD to receive coordinated, personalised, end of life care.
Identify gaps in knowledge of hospice staff.
Hospice peer review conducted by LD self-advocacy group. Opinions of LD providers and professionals canvassed. Presentations delivered through community engagement emphasising objectives.
• Information pack produced for hospice staff and volunteers. End of life care education scheduled for LD professionals.
• Easy– read literature review, funds granted to adapt hospice information.
• Accessible advanced care plan developed
• 24 LD care home staff accessed ‘Palliative Care Champions’ training.
• Interactive Dying Matters event for people with profound, multiple LD.
• Staff trained in Makaton.
• University partnership creating diversity/inclusion initiatives and research proposals.
• Development of regional LD palliative care network involving health care professionals, carers, people with learning disabilities and advocacy groups.
• Hospice and all retail stores awarded ‘Safe Places.’
• Mobile sensory room at hospice
Feedback from people with learning disabilities:
‘…they are true learning disability champions, passionate and committed to getting the service right for everyone.’
‘The hospice is already a friendly place and I can see it getting more disability friendly.’
Conclusion: The project has addressed inequalities from this marginalised group’s experience. The programme is ongoing, ensuring people with a LD receive fair, accessible, inclusive end of life care, now and in the future.
d. Die Laughing
Carolyn Mandersloot's comedy is like having a good biscuit and a cup of tea with your hilarious best friend. Only better. She weaves together a narrative exploring the grand complexities and challenges of the human experience- birth, life, death and parenting teenagers. Carolyn draws her experience of palliative care nursing to deftly hold a compassionate space in which audiences can laugh at the both the unthinkable and the undeniable. Carolyn gives us a whole hearted opportunity to swallow a heaping dose of laughter as the best medicine in the contemplation of our own mortality. Carolyn has performed nationally and will bring her aspects of her show to the audience offering a lightness to the conversation of death and dying.