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New tool to help family carers of people living with motor neurone disease

Author: Dr Katherine Knighting, Senior Research Fellow Edge Hill University, UK
06 March 2017

Dr Katherine Knighting , Senior Research fellow at Edge Hill University, writes about using the Carers’ Alert Thermometer to identify and triage the needs of family carers supporting people living with motor neurone disease.

The most recent motor neurone disease (MND) Association carers’ survey[1] highlighted that carers of people living with MND (plwMND) carry out a wide range of roles including physical tasks such as personal care, practical household tasks, as well as providing emotional support.

More than half of the carers reported they spent over 100 hours a week in their caring role.

Whilst many were satisfied with the information and support received from the MND Association, the overall impression about the impact of their caring role on their lives was more negative than positive; with only one in four feeling they receive the practical help they need.

The Carers’ Alert Thermometer (CAT) was developed at Edge Hill University in a study funded by the National Institute for Health Research (2011-2014).

The CAT was publically launched in September 2014 and has a dedicated website with resources including a video on how to use the CAT. Over 280 people have registered with the website from 13 countries.

The CAT is designed to be completed collaboratively by carers and non-specialist staff to identify and triage the needs of carers of family members with advanced or progressive illness.

The CAT has 10 questions to identify any support needed by the carer to provide care, and for the carer’s own health and well-being.

A traffic light system indicates the level of need for each alert question and a visual thermometer signifies the overall extent of the carer’s needs.

There is a guidance section of next steps for each alert which can be tailored to local services and space to create an action plan and future review dates.

The team at Edge Hill University who developed the original CAT are committed to adapting the tool to be used in a range of settings and for carers of different patient populations.

Professor Barbara Jack, Professor Mary O’Brien and Dr Katherine Knighting have led a collaborative project to pilot use of the CAT with the MND Association.

Following two workshops with a Regional Development Manager, Regional Care Development Advisers and volunteers who are called MND Association Visitors (AVs), the CAT was adapted for use by the volunteers who support people living with MND and their family carers.

The volunteers received email and phone support from the CAT team during the pilot. An evaluation of their experience of using the CAT and views on its use were gathered by completion of an online survey and telephone interviews.

The CAT was piloted by MND Association Visitors in two regions of the UK with the family carers of plwMND that they assist.

In the evaluation, volunteers reported finding it a useful tool to address carers’ needs in a structured and collaborative manner.

Volunteers praised the way the CAT allowed them to gently but systematically explore the feelings of carers and plan together any additional support they felt was needed.

Use of the CAT was seen as highly valued by the carers themselves and would be useful for monitoring change over time.

As a volunteer put it, “I feel that it will be a useful tool used over a period of time as the caring role changes with progression of the disease.”

Using a systematic approach to triaging carer needs also provided them with evidence to take to multi-disciplinary meetings to advocate for the support needed by carers.

Another volunteer said: "It was quite interesting that social services started to sit up and take notice, when we started to actually be talking about risks to carers… it’s a really, really useful tool for us." 

The volunteers encouraged adoption of the CAT as a standard part of the AV training provided by the MND Association to support widespread use of the tool throughout the organisation, with one volunteer saying, “I'm confident that with frequent use the tool will become standard for volunteers.”

Regional Delivery Manager for the South, Hilary Fairfield, said: “The Motor Neurone Disease (MND) Association has good evidence about the impact of MND on carers and we are continually reviewing the type and level of support that we offer them to relieve some of the stress and pressures of this demanding role. 

“The Carers’ Alert Thermometer (CAT) is proving to be a useful tool for identifying carers’ needs, enabling us to increase our support, if necessary, and signpost the carer to other services. 

“We are aiming to roll the use of the CAT tool out more widely across England, Wales and Northern Ireland, to help us support and reach out to even more carers in the future.”

Using the CAT with carers upholds the MND Association’s mission to ensure that support is there not just for the person diagnosed with MND, but for the relatives and friends who care for them too.

For further information on the CAT please visit https://www.edgehill.ac.uk/carers or contact the team at eprc@edgehill.ac.uk

References

[1] MND Association (2015) Experiences and views of carers of people living with MND: Findings of the MND Association Carers Survey 2015. https://www.mndassociation.org/wp-content/uploads/mnd-association-carers-survey-2015-findings-report.pdf

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