Since its inception in 2007, the Research Partners Forum has been involved in a number of research projects including...

  • Metaphor in End of Life Care
  • Experience of User Research
  • Young Carers
  • Carer Support
  • Gender in Care Homes
  • Feasibility Study of Ascites
  • Stroke Studies
  • CSNAT Heart Failure
  • Discharge Procedures Between Hospital and Home
  • Older People Living Alone at Home
  • Palliative Care
  • Models of End of Life Care
  • PPC in Hospitals
  • ACP in Community Care
  • Dementia in Care Homes
  • Blood Transfusions
  • End Stage Renal Disease

PiiAF [Public Involvement Impact Assessment Framework]

This research was funded by the MRC’s Methodology Research Programme. We joined the research team as members of the Public Advisory Group [PAG] drawn from both the Lancaster and Exeter regions. The outcome of our project: PiiAF guidance and resources can be accessed on line at piiaf.org.uk. Impacts can be many and various because of the different types of research, the people who are involved and the different ways of being involved. The primary aim of the PiiAF is to help people plan how to assess the impacts of PI; it is hoped that it will also help people think about how best to involve the public in their particular research.

Peer Education

Several members of LURP participated in training for Peer Education. A group arose from this which together with an academic took this work forward in the local area. A grant of £10,000 was given by the then primary care trust. The group produced a document to be used in planning for wishes and preferences in end of life. Workshops were done with members of the public and professionals talking about the content of the portfolio and a presentation was done at a PCT conference. The portfolio document has been well received.

The group also obtained another grant from charitable funding and ran six afternoon workshops connected with aspects of death and dying and preparation for end of life. The group is currently exploring an extension of its range of activities.
The work of the group has been the subject of an academic paper by Katherine Froggatt at the University of Lancaster and a chapter in a book. Froggatt K with CapstIck C, Coles O, Jacks D, Lockett S, McGill I, Robinson J, Ross-Mills J, Matthieson M (2014) Addressing End of Life Issues Through Peer Education and Action Research. In Stern, T, Townsend A, Rauch F, Schuster A. Action Research Innovation and Change, International Perspectives Across Disciplines, Routledge, London pp 43-56 andBMJ. Com March 21 2014, End of Life Conversations and Care- an asset-based model for community engagement. Pub groups-bmj.com

The Stroke Study - Initiating end of life care in stroke: clinical decision-making around proposals

This is a two-phase study over two years. Two of the LURP group are providing Patient and Public Involvement (PPI) for this and have attended meetings in Manchester with another to take place in Wales. Mary Turner, a research fellow is the academic at the University of Lancaster involved in the study.

What does the study seek to achieve?

The ambition in this study is to improve end of life care for people with a stroke. Whilst it affects people of all ages, including children, stroke is most common in people who are older: two thirds of strokes happen in people who are over 65 years of age. New treatments which reduce disruption to the brain’s blood supply, and better organised health services, mean that many people make good recoveries from stroke. A significant proportion of people who do suffer a stroke, nearly one in five, will however die in the first month of their stroke. The researchers want to improve the care for these people and their families.

What is the challenge we want to address?

Health care professionals find it challenging to support patients who might die from their stroke, and their families. It is often not possible to provide the care and support that patients and families might want. In addition, many patients and families experience problems that good quality palliative care might help with, regardless of whether they are actually dying. These include dealing with worries about, and planning for the future; pain; feeling tired; feeling down and low. As these patients are not ‘dying’, staff can find it difficult to use ideas and caring tasks from palliative care alongside their other work for these patients.

Why is this important?

The researchers believe all patient and families who may benefit from palliative care should be able to receive this if they need it In addition, more than half of complaints about hospitals sent to the Healthcare Commission for independent review between July 2004 and July 2006 were about care surrounding a death. We believe this is an important aspect of care to get right.
In the first phase, researchers will be following all people admitted to any one of four hospitals to determine the different patterns of recovery, or dying, they may experience. They will also talk to different patients and families about their experiences and whether they have preferences about care and treatment. The second phase uses information learned about these patterns of recovery to develop ‘stories’ or ‘scenarios’ of what doctors, nurses and therapies and families. The stories will be used to investigate how they make decisions, what they are uncertain about, and what they do. The findings from both phases will help to develop new was of training and supporting health care staff to improve their practice.

Public Involvement

As the research includes some challenges it was thought to be helpful to gain alternative views about different things. One of the difficulties envisaged was that staff might find it uncomfortable to start conversations with patients and families about palliative and end of life care. Practitioners used members of the LURP team for role plays as to how best to broach these conversations and how they might deal with different members of the public displaying different types of behaviour.
The research is ongoing and further involvement will take place by the two people involved in PPI.

We also offer consultation on research proposals and bids. Researchers may attend our meetings to present their research proposals for comment.

Some of our group are members of various boards and panels. e.g.. The RfPB, North West People in Research, Lancaster University CLG Steering Group.

We have also carried out work for the Research Design Service and acted as public reviewers for NIHR funded research proposals.

A number of our members co-ordinate and run the Continuing Learning Group, a public engagement education project at Lancaster University.