Older people living with severe frailty are nearing the end of life and yet their palliative care needs are often either unknown or unmet. The PALLUP study aims to improve the support provided to older people living at home and their carers; to enable the best possible quality of life in their final years.
Living with advancing frailty: Educational film
This film brings together the thoughts and experiences of ten older people with severe frailty and four family members and friends on what and who they feel is most important to them in living their lives well. We have grouped their responses into categories of need - identifying those elements that these older people have described as supporting their personhood, kinship and comfort.
This film was made during Covid-19 using an innovative method of recorded Zoom interviews; participants were supported in person throughout the process by their clinician. We thank each person for their willingness to share their lives at a time of great challenge.
The film has been edited to serve as an educational resource and you can access the film for this purpose by completing our submission form. We’re keen to track the impact of this film and we would be grateful if you would allow us to contact you via email at a later date to ask you how you have been using the film and how it has informed your practice. If you are happy to do this, please select this option in the submission form.
Useful PPIE resources
The ARC KSS ‘A selection of systematic reviews for Researchers, Services and Commissioners’ - See pages 11-12 for reviews relating to frailty/severe illness/end of life. Ludwig et al (2021) of particular interest if looking at the ethical aspects of involving older people. Covers the four principles: Autonomy, non-maleficence, beneficence, justice.
The ARC South London collection of resources. ‘A collection of resources to support public involvement in research for researchers, non-researchers and public contributors (PDF)’. Resources are groups under the headings ‘Involvement in research’, ‘Equity diversity and inclusion in research’, ‘Evaluating research’, ‘Research ethics’, ‘Implementing research into practice’. It also indicates if the resource is guidance, event, book/e-book, podcast, training, webpage or toolkit.
The ARC KSS PCIE Guide. Contents include why and when to do PCIE, how to do PCIE including recruitment, EDI, facilitating meetings, ethics, feedback, impact. Examples and case studies are also included.
The ARC KSS PCIE Resources page. All PCIE resources gathered in one place. There is helpful information on how to get started with PCIE and a jargon buster.
The ARC KSS co-production resources and information. There is a helpful leaflet for prospective PCIE called ‘Co-Production: Together we are better - a leaflet for the public.’ There is also ‘Co-production case studies: A retrospective review of case studies carried out within the ARC KSS’ which has case studies of previous projects involving co-production and may be helpful when setting up and thinking about how to include patients and public.
The PALLUP Study: Improving home-based palliative care for older people
Principal investigator: Professor Caroline Nicholson
Start date: September 2019
End date: September 2024