Background Burden and distress experienced by family carers of plwMND is well known and reported widely within the published literature. Evidence-based screening tools to help identify carers at risk of breakdown and plan appropriate support to meet carers’ needs are urgently needed.1 The Carers’ Alert Thermometer (CAT) was developed in a study funded by the NIHR (2011-2014). It is a quick and easy-to-use alert tool designed to be completed collaboratively by carers and non-specialist health staff to identify the needs of carers of family members with cancer and advanced progressive illness in their last year of life.2 The CAT has 10 questions to identify the support needed by the carer to provide care and for the carer’s own health and well-being. A traffic light system indicates the level of need for each alert and a visual thermometer signifies the extent of the carer’s needs. There is a guidance section for alerts which can be tailored to local services and an action plan to complete with review dates. (www.edgehill.ac.uk for more details). Objectives To modify the CAT and pilot it with family carers of plwMND to determine its usefulness in identifying their need for support. Methods A workshop was held with MND Association Visitors (AVs), Regional Care Development Advisers (RCDAs) and a Regional Delivery Manager (RDM) to review the CAT, provide training on its implementation and demonstrate resources including a DVD. The CAT was modified to ensure its wording and format were appropriate for non-healthcare staff to use e.g. removing some patient information and replacing the term ‘risk’ with ‘need’. Participants then trialled the CAT with family carers during routine appointments. Feedback on the utility of the CAT is obtained through a self-completed online survey and telephone interview. Results Piloting is currently underway. To-date preliminary data reveals that AVs and RCDAs who trialled it found the CAT very useful in their discussions with family carers and intended to continue using it. It was felt particularly beneficial for monitoring changes in the caring role as the disease progresses. Further roll out and piloting of the CAT is underway and additional findings will be presented. Discussion and conclusions Participants found the CAT relevant and feasible. It is an easy-to-use tool to facilitate discussions with family carers regarding their own specific needs and how these may be addressed. Use of the CAT with carers supports the MND Association’s mission to ensure that support is there not just for the person diagnosed with MND, but for the relatives and friends who care for them too. References 1. Jackson D, Turner-Stokes L, Harris J et al. London: Department of Health, 2011. 2. Knighting K, O'Brien MR, Roe B et al. BMC Palliative Care 2015 May 3;14:22.
|Publication status||Published - 6 Dec 2016|
|Event||27th International Symposium on ALS/MND - Dublin, Ireland|
Duration: 6 Dec 2016 → 9 Dec 2016
|Conference||27th International Symposium on ALS/MND|
|Period||6/12/16 → 9/12/16|