Table 3 Domain themes and survey examples

“How important is it to assess…..”

1. Understanding the current caring context

Carers spoke about the importance of understanding their ‘lived situation’ such as who they were caring for, other demands on their time, and their understanding of the diagnosis and prognosis of the person they were caring for

…if the carer understands the expected progress of the condition of the person they are caring for?

10

2. Current care provided by the carer

Carers were providing many different levels of care including physical, emotional and practical care

…if the carer feels able to support the emotional needs of the person they care for?

4

3. Carer’s relationship with professionals

Carers spoke about their relationships with multiple professionals who were providing care or treatment to the person they cared for, whether they felt excluded or included in discussions about the care of the person they cared for and about their relationships with professionals supporting their own health and social care.

… if the carer feels that professionals involve them in decision making by seeking their knowledge and expertise about the care needed by the person they care for?

4

4. Respite and emergency care support

Carers spoke about the need for a break or respite care and their concerns about what would happen to the person they care for in an emergency or if they were unable to provide care

… if the carer has planned what should happen in an emergency if they were unable to provide care, e.g. if they become ill or go into hospital?

3

5. Financial support and assessments

Carers spoke of the stress caused by financial issues and the lack of systematic assessment or support for carers generally

…if the carer knows of and has applied for all appropriate funding, such as benefits, mobility schemes?

7

6. Carer’s own health and well-being

Carers tended to put their own needs after those of the person they care for but many carers had their own health concerns and some spoke of the importance of needing time for themselves.

… if the carer is able to balance their own health needs with the demands of caring?

6

7. Support for the carer

Carers spoke of ‘not knowing what support was available’ until they met a ‘gateway’ person who provided information or access to services.

… if the carer has received information about the carer support available in their area?

6

8. End of Life (EoL) Care and planning

Carers spoke of needing to focus on the current caring situation rather than EoL planning but recognised the importance of knowing the person’s wishes

… if the carer knows the wishes and preferences of the person they care for, and they have been written down and shared, e.g. advance care planning (ACP) document?

4