Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study.
BACKGROUND
There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff.


METHODS
A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers' Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011-2014).


RESULTS
A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer's own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel.


CONCLUSIONS
The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.
Evidence-Based Practice Research Centre, Edge Hill University, Faculty of Health & Social Care, St Helens Road, Ormskirk, Lancashire, L39 4QP, UK. knightk@edgehill.ac.uk.
Katherine
K
Knighting
Evidence-Based Practice Research Centre, Edge Hill University, Faculty of Health & Social Care, St Helens Road, Ormskirk, Lancashire, L39 4QP, UK. Obrienm@edgehill.ac.uk.
Mary R
MR
O'Brien
Evidence-Based Practice Research Centre, Edge Hill University, Faculty of Health & Social Care, St Helens Road, Ormskirk, Lancashire, L39 4QP, UK. brenda.roe@edgehill.ac.uk.
Brenda
B
Roe
Liverpool Business School, Liverpool John Moores University, Liverpool, L3 2AJ, UK. Rob.Gandy@ntlworld.com.
Rob
R
Gandy
Academic Palliative and Supportive Care Studies Group, Institute of Psychology, Health and Society, University of Liverpool, Liverpool, L69 3GL, UK. mlw@liv.ac.uk.
Mari
M
Lloyd-Williams
The School of Nursing & Midwifery, University of Sheffield, 3a Clarkehouse Road, Sheffield, S10 2LA, UK. m.r.nolan@sheffield.ac.uk.
Mike
M
Nolan
Evidence-Based Practice Research Centre, Edge Hill University, Faculty of Health & Social Care, St Helens Road, Ormskirk, Lancashire, L39 4QP, UK. jackb@edgehill.ac.uk.
Barbara A
BA
Jack
D032722:Advance Care Planning / Q000458:organization & administration; D017028:Caregivers / Q000191:economics / Q000523:psychology*; D004630:Emergencies; D004739:England; D005190:Family / Q000523:psychology*; D006304:Health Status; D006801:Humans; D008603:Mental Health; D020380:Needs Assessment; D011368:Professional-Family Relations; D012144:Respite Care / Q000458:organization & administration; D012959:Socioeconomic Factors; D013727:Terminal Care / Q000458:organization & administration*; D013997:Time Factors