Table 1 Description of ASCOT-Carer and Carer Experience Scale attributes
ASCOT-Carer Attribute | Description |
Occupation | Being able to do the things you value and enjoy, whether it be paid or unpaid work, caring for others, or leisure activities |
Control over daily life | Being able to choose what to do and when to do it; having control over daily activities |
Self-care | Feeling able to look after yourself as well as you want to: for example, eating well, getting enough sleep |
Personal safety | Feeling safe and secure, where concerns about safety may include fear of abuse, physical harm or accidents that arise as a result of caring |
Social participation and involvement | Being able to sustain the relationships with friends and family, and feeling involved or part of a community, as much as you want to |
Space and time to be yourself | Having the space and time you want away from the caring role and the responsibility of caregiving |
Feeling encouraged and supported | Feeling encouraged and supported by professionals, care workers and others, in your role as a carer |
Carer Experience Scale Attribute | Description |
Activities outside of caring | Being able to do a range of things you want outside of caring (e.g. socialising, physical activity and spending time on hobbies, leisure or study) |
Support from family and friends | Amount of personal help in caring and/or emotional support from family, friends, neighbours or work colleagues |
Assistance from organisations and government | Amount of help from public, private or voluntary groups in terms of benefits, respite and practical information |
Fulfilment from caring | Frequency of experiencing positive feelings from providing care, which may come from: making the person you care for happy, maintaining their dignity, being appreciated, fulfilling your responsibility, gaining new skills or contributing to the care of the person you look after |
Control over caring | Being able to influence the overall care of the person you look after |
Getting on with the person you care for | Frequency of being able to talk with the person you look after and discuss things without arguing |