Helping people stay in good health when looking after someone towards the end of life
Carer advisors sought
Do you have experience of supporting a family member, partner, friend or neighbour towards the end of life?
Would you like to help as an adviser on a project that aims to identify, summarise and report on what is known about the things that affect people’s psychological health when they are acting as a carer and supporting someone towards the end of life?
What is the Project?
Many family members, partners, neighbours, and friends find themselves in the role of being a ‘carer’. They give invaluable and unpaid care and support to people who are nearing the end of their lives. Although this can be positive and rewarding, it can also often take its toll on the carers’ psychological health. A significant number will suffer from some anxiety, depression, tiredness, and stress as a result.
There are a number of factors that can make carers more prone to suffering from poor psychological health during end of life care giving, and also factors that may better equip some carers to cope.
We believe that gathering together and sharing existing knowledge and evidence about these factors might be able to help us predict, reduce or relieve poor psychological health among carers.
Our project will therefore for the first time gather, summarise, and organise current research findings about factors related to poor psychological health for carers during end of life care giving, with a view to improving the situation for carers in the future. A very important part of this work is taking account of carer experience to ensure that it informs our findings.
Below we tell you more about how carers may be able to get involved.
Thank you for your interest in our project!
Gunn Grande, Principal Investigator Jackie Flynn, lead for carer involvement
This research is funded by the National Institute for Health Research (NIHR) Health Service & Delivery Research (HS&DR) Programme
How can carers get involved?
We are at the moment looking for people who have experience, whether at present or in the past, of supporting a family member, partner, friend or neighbour at the end of their life to join the Project’s Review Advisory Panel (RAP).
We would like these carer Panel members to provide advice to help us make sure that we take account of carers’ views and experiences, and that we summarise and report research findings in a way that they think makes sense.
We are currently seeking 5 carers in total to join the Review Advisory Panel.
As we have a limited number of places, we are sorry that we may not be able to offer a place to everyone who is interested. However, later in the project we will be looking for additional carers to help with analysis and to take part in stakeholder groups to help us communicate our findings. Carers who are interested in the project, but who were not offered a place on the Panel due to the limited number of places, may be able to participate in one of these future roles.
Who can become a carer member of the Review Advisory Group?
To become a carer member you will need to:
- have experience, either currently or in the past, of supporting a family member, partner, friend or neighbour at the end of their life
- be able to contribute to meetings and live within reasonable travelling distance of the University of Manchester
- be aged 18 years or above
- have a good command of written and spoken English
- feel able to read, scrutinise, and comment on documents
- feel able to give advice from a carer perspective to researchers
- feel able to reflect on your views and personal experiences in a group
- be able to work effectively as part of a group
Who else would be on the Review Advisory Panel?
In addition to the 5 carers on our Review Advisory Panel we aim to include a patient, a researcher, a clinician, a service commissioner, and a policy maker.
How would Review Advisory Panel meetings work?
The first meeting will be held for the carer/patient members only to introduce them to the project, to ensure they are comfortable with each other and with research team members, and to ensure that they understand their role and are comfortable with what their participation involves.
We aim to hold 6 Review Advisory Panel meetings during the period over which the project will last. This is estimated to be 18 months in total.
Each meeting will be held at the University of Manchester and will last 3-4 hours; with lunch being provided.
We appreciate that not everyone will be able to attend all the scheduled meetings so we will organise smaller, more flexible meetings if necessary to make sure we include the views of many carer members as possible.
On occasion, if carers have difficulty attending in person, we may be able to arrange for them to dial in by phone or internet (a conference call).
We will pay for any necessary respite care if carer members need someone to look after the person they are caring for while they attend a meeting.
Information about meetings and any reading materials will be provided well in advance.
What will we ask carer members to do?
We will ask carer RAP members to read project documents and provide advice on for instance:
- How we should search the current research literature to make sure we do not miss anything that is relevant to carers
- How we should record, summarise, and organise our findings to make sure these make sense to carers
- How we should go about recruiting further carers as co-analysts or stakeholder group participants
- How we should conduct stakeholder workshops and focus groups so that carers feel comfortable to express their views
- How we should communicate our findings to stakeholders, including review of information materials and formats to be used, and providing advice on how to distribute these to the most relevant and appropriate audiences.
Will carer members be paid for their time?
The appointed carer members will be paid for the time they spend reading and viewing documentation, and attending meetings.
Payments will be in accordance with the hourly rates recommended by INVOLVE. This is £12.50 - £20 per hour, depending on the task being undertaken.
We will also reimburse travel expenses for regular public transport/ car journeys to attend meetings, and pay for any respite care required to attend meetings.
How can I apply to become a carer member or get more information?
Because we have limited carer places on the Review Advisory Panel we are sorry that we may not be able to offer a place to everyone that is interested,
We therefore need an appointment process and ask carers who wish to be considered for appointment to the Review Advisory Panel to complete a short application form by 12th September 2019.
Shortlisting will give priority to those with more recent caregiver experience. We will then hold informal interviews with shortlisted applicants to provide more information, and to appoint the 5 Carer RAP members.
Jean McFarlane Building
University of Manchester
Manchester M13 9PL
You can also contact Gunn for further information by mail/email at the address above or on 0161 306 7695.