Invite to participate in online survey on the end of life needs of older people with severe frailty

The University of Surrey would like ACPOPC members and their colleagues to participate in the PALL UP Study

I am Professor Caroline Nicholson, the chief investigator of a research study which aims to improve the support for older people living with severe frailty and their families. The focus of this research is on those who have complex care needs and are reliant on others in order to live their daily lives, to enable them to have the best possible quality of life in their final years.

I am emailing you today to invite you to take part in the first of two online surveys - which aim to find out what you think are the most important palliative care needs (i.e. needs related to the final years of life) for older people living with severe frailty who are living at home (home being defined here as domestic dwellings, including residential care settings, but not including long term care facilities with on-site nursing or medical care).

In this study, palliative care need is understood as having a requirement for comfort and support with a condition that is life limiting that can be met within health and/or social care systems, voluntary care or community groups.

Why are we conducting the study?

The larger research aims both to identify and understand the palliative care needs of older people living with severe frailty and to support community services to deliver this care. Establishing consensus on these needs is central to ensuring subsequent stages of the study are aligned to these needs and priorities.

The purpose of the two-round online survey is to establish consensus on the core palliative care needs of older people with severe frailty who are living at home, as defined above. The findings will be discussed at an online consensus meeting which you may be invited to attend. 

Why You?

You have been identified as someone with an interest, knowledge and/or experience in providing home-based care for older people with severe frailty.

We are interested in getting input from a wide range of stakeholders, including but not limited to, the following groups:

  • unpaid carers or family members
  • voluntary and charity sector workers in end-of-life or ageing areas (non-NHS funded)
  • care commissioners and service leads in end of life or ageing facilities
  • specialist palliative care practitioners (including hospices)
  • researchers
  • policy makers
  • older people specialist care practitioners across a wide range of professions
  • community specialist practitioners across a wide range of professions
  • social care providers (including housing)

What are you asking of me?

The participant information sheet below gives full study details.  Your commitment should be less than one hour over 3 months, to fill in two online surveys, plus an additional half a day if you are invited and agree to attend the online consensus meeting.

 

 

 

 

What next?

Please read the participant information sheet. If you are happy to participate, please copy and paste the following link to the first online survey into your browser:

https://surreyfahs.eu.qualtrics.com/jfe/form/SV_9HpNCTmTM1akN3n

We would also be extremely grateful if you would share this survey invite by forwarding on this information to anyone who you think would have an interest in the survey topic.

I hope you will agree to take part. If you have any questions, please contact the PALLUP research study team via email c.nicholson@surrey.ac.uk or richard.green@surrey.ac.uk, or phone 07815919559.

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