Carers' wellbeing and support measure
In collaboration with the Royal College of Psychiatrists and the Alzheimer's Society, Rethink Mental Illness has developed and tested a new tool to measure Carers' well-being and satisfaction with support. The tool can be used to highlight carers' needs and to assess whether interventions are effective in improving carers' lives.
Working with carers to understand needs
The work began by looking again at an existing questionnaire called the Carers' and Users' Expectations of Services - Carers' version (CUES-C). We asked carers to look at this questionnaire and tell us what they liked and didn't like about it.
In focus groups, carers discussed the issues that were important to them and had the biggest impact on their lives. From these discussions we drew out the most important themes. These included:
- being able to take a break
- having a life of your own
- reaching 'breaking point'
- 'drifting apart' from friends and family
- physical health
- getting information
- being involved in decision making
- working with staff
Alongside two carers who formed part of the project team, we developed these themes into a series of questions. They ask carers to rate how concerned they are at the present time with each issue.
Through Rethink's services and support groups, hundreds of carers helped us to test this questionnaire. Their feedback helped us to refine and shorten the measure.
Testing the effectiveness of the measure
Experts from the London School of Hygiene and Tropical Medicine looked at all the data that carers provided. They ran a series of psychometric tests, which are designed to test whether it is a useful measure. Through these tests they established that the questionnaire was a valid measure of carer well-being and satisfaction with support.
This validity is important because it means that different people and services can use this measure and be confident in what it tells them.
