This page has a summary of the original ‘Assessing the Needs of Carers’ research project which developed the CAT. You can register for access to the CAT and resources to watch a short video about the development and use of the CAT.
Project title: What do carers of patients with cancer & advanced progressive illness find burdensome during the final year of life; how might this be alleviated by the adoption of an alert system.
Grant Holders: Prof Barbara Jack, Dr Mary O’Brien, Prof Brenda Roe (Edge Hill University), Prof Mike Nolan (University of Sheffield), Prof Mari Lloyd Williams (University of Liverpool), and Kirsty Pine (NHS Halton and St Helens).
Senior Research Fellow: Katherine Knighting
Caring for people with cancer and other advanced progressive illnesses falls largely on their families. The support provided by family carers is critical, determining both the place and quality of care for the patient. Carers can incur an increasing burden which puts them at risk of physical and psychological distress affecting their ability to care. Understanding how to prevent these stresses is vital to meeting the increasing demands for home-based care. Primary care staff need help identifying carers at risk so they can support them and avoid inappropriate patient admissions to hospital. With an increasing ageing population, it is essential that carers’ needs are regularly assessed to identify crisis points and alert staff to carers’ increasing needs.
The project sought to identify what carers of patients with cancer and advanced progressive illness find burdensome whilst supporting someone during their final year of life; and to develop an alert tool which will identify these burdens to trigger or facilitate signposting to the provision of appropriate support.
PROJECT DESIGN AND DATA COLLECTION
Phase 1 – We completed interviews and focus groups with carers across the North West of England to understand their experiences, burdens and views on the proposed CAT.
Phase 2 – We conducted a two-round survey with health and social care professionals, organisations supporting carers, and carers to gain agreement on the most important items of carer burden to be included in the CAT from those raised by carers in Phase 1.
Phase 3 – The findings of the survey were summarised and sent to a virtual panel of individuals from national and regional organisations that have a strategic role in end of life care and carer support, along with carers from Phase 1 and 2 of the project, to (a) comment on and (b) rank their top ten items of carer burden from those identified as the most important items in the survey.
Phase 4 – the pilot CAT was created with 10 questions based on the top ten items of carer burden. The pilot CAT was then tested in primary care and a cancer centre to test how user-friendly it was for staff and carers to complete the questions and to see if it covered all the important issues for carers.
The number of carers who had received any form of assessment, aside from means testing for financial benefits, was very low. All participants in the project valued the idea of a regular assessment by someone involved in the care of the patient so they knew the situation and, preferably, already had a relationship with the carer. Carers’ knowledge of available facilities and support varied considerably, depending on the length of time being a carer and previous caring roles. A lack of information and signposting to support services, had an incremental detrimental effect on carers’ health and well-being, and ultimately on their ability to care. Many carers reached a crisis point before they met a ‘gateway’ person who provided information or signposted them to appropriate support. Professionals and carers demonstrated a clear priority for support and services to be focused on the current caring role and carer wellbeing in order to reduce carers’ burden.
This project has identified that the varied and complex needs of carers are often not met until they reach a crisis point and that the use of a short alert tool, such as the CAT, would increase carers’ needs being identified and supported in a more proactive way, helping them to provide this vital role. The recommendations from the project are:
- To regularly assess carer’s needs with a short alert tool such as the CAT in order to identify areas of current need and aid anticipatory planning of support needed;
- Timely provision of information to all carers about carer services and support organisations from the point of the patient’s diagnosis, with periodic reminders and signposting;
- Timely provision of equipment and care services for the patient to support the carer to provide appropriate care for the patient at home.
FURTHER DEVELOPMENT AND IMPLEMENTATION OF THE CAT
The team conducted a series of consultations with carers and professionals in order to further refine the pilot CAT for a wider implementation and evaluation. The CAT has been adopted by organisations and is being piloted in different areas of the UK.
If you would be interested in piloting the CAT in your service please check out the website for information and contact us at firstname.lastname@example.org.