Abstract
BackgroundThere 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.MethodsA 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).ResultsA 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.ConclusionsThe 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.
Highlights
There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers
Drawing upon the concept of the modified early warning systems (MEWS) which detect early signs that patients are in need of a higher level of care [33], we developed the Carers’ Alert Thermometer (CAT) that can be used in daily practice in the home, by non-specialist staff, to identify carers who are at risk and in need of a formal needs assessment
This paper has reported on the development of an alert indicator to identify family carers of patients with advanced and progressive disease who are in their last year of life, who may be at risk of increased strain and have unidentified needs
Summary
There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. A recent study by Carduff et al, [11] highlighted the ‘hidden carers’ who are not known to health and social care services, partly due to them not identifying themselves as carers, adding to the estimated figure This figure comprises a growing ageing population with the over-65 year old population accounting for 17% of the total, and an increasing proportion of ‘older old’ carers aged 85+ [12]. Recognising carers’ needs and understanding the type and level of support available to them is vitally important if the goal of achieving a good home death is to be realised [16] Supporting carers in their caring role is a key policy in many countries; the appreciation of carers as partners or co-workers in providing care is recognised within the End-of-Life Care Strategy in the UK [7], the need to identify and address carers’ needs is evident in Canada [17], Australia [18] and within Europe [19]. Priority four states that ‘The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible’ (p87)
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