Table 1 Overview of study design and participants

Phase 1a

To capture carers’ experiences, identify factors causing stresses/burdens during the caring experience and views on the use of a carer’s alert tool

Prospective semi-structured interview study with carers (qualitative data)

18 carers (14 current carers and 4 carers who were bereaved during the study)

Months 1-16

Phase 1b

Same as Phase 1a

Focus group study with carers (qualitative data)

5 focus groups at carer centres and a hospice involving 25 carers (19 current carers and 6 bereaved carers)

Months 1-16

Phase 2

To gain consensus on the most important factors to be included from Phase 1 for inclusion in the CAT

A two round Delphi survey (quantitative and qualitative data)

151 surveys were completed across the two rounds by 126 participants.

Months 17-18

Round 1: 44 items across 8 topic domains

Round 1 = 43 professionals, 42 carers

Round 2: 29 items across 8 topic domains

Round 2 = 44 professional, 22 carers

Professionals were from charities, carer’s centres, university, hospices, NHS Trusts (Primary Care, Community Care, Hospitals), local authority and personal social services (n = 81)

Carers were current and bereaved carers (n = 45)

Phase 3

To seek expert panel review of the top ranked factors of carer burden from Phase 2, and consensus selection of the final list of 10 items for the pilot CAT

Consultation and consensus selection (quantitative and qualitative data)

6 professionals from national and regional organisations with a strategic role in End of Life care and carer support and 4 carers who participated in Phase 1 and 2 of the study.

Month 19

Phase 4

To pilot the readability and usability of the initial CAT

Pilot study of the initial CAT (quantitative and qualitative data)

8 professionals across 4 clinical sites:

Month 20–24 (Official end of study)

• 4 District Nurses across two Community NHS Trusts

• A Clinical Services Manager at an adult hospice,

• Two Clinical Nurse Specialists and a Social Worker at a tertiary cancer centre.

7 current carers across the sites

Phase 5

To review the findings of the pilot and consult with potential user groups on any revisions to be made to the CAT tool

Consultation review meetings with potential users (quantitative and qualitative data)

• 18 carers at a carers centre

Months 30-35

• Consultation meetings with lead professionals at the pilot clinical sites and with professionals attending a national consultation day organised by a national nursing organisation. Professionals included Palliative Care Consultants, District Nurses and Team Managers, Community Matrons, NHS Commissioners, Nurse Educator, Chief Executive of a national nursing organisation, and Managers of voluntary organisations supporting carers (n = 33).