The authors declare that they have no competing interests.
All authors meet the criteria for authorship as they have been engaged in (1) the conception and design of the study, or acquisition of data, or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be submitted. All authors read and approved the final manuscript.
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.
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).
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.
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.
Leadbeater C, Garber J. Dying for change. http://www.demos.co.uk/files/Dying_for_change_-_web_-_final_1_.pdf.
Murtagh F, Bausewein C, Petkova H, Sleeman K, Dodd R, Gysels M, et al. Understanding place of death for patients with non-malignant conditions: a systematic literature review. http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0006/85083/ES-08-1813-257.pdf.
Shepperd S, Wee B, Straus S. Hospital at home: home-based end-of-life care. http://www.update-software.com/BCP/WileyPDF/EN/CD009231.pdf.
Gott M, Frey R, Robinson J, Boyd M, O'Callaghan A, Richards N, et al. The nature of, and reasons for 'inappropriate' hospitalisations among patients with palliative care needs: a qualitative exploration of the views of generalist palliative care providers. Palliat Med. 2013;27(8):747–56. CrossRefPubMed
Department of Health. End-of-life care strategy: promoting high quality care for all adults at the end-of-life. https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life.
Jack B, O’Brien M, Scrutton J, Baldry C, Groves K. Supporting family carers providing end-of-life home care: a qualitative study on the impact of a hospice at home service. J Clin Nurs. In press.
Social Care Institute for Excellence. Dying well at home: the case for integrated working. http://www.scie.org.uk/publications/guides/guide48/.
National Council for Palliative Care. Who Cares? Support for carers of people approach the end-of-life. http://www.ncpc.org.uk/sites/default/files/Who_Cares_Conference_Report.pdf.
Office for National Statistics. Population Estimates for UK, England and Wales, Scotland and Northern Ireland, Mid-2011 and Mid-2012. http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77-319259.
Pickard L. A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032. Ageing Soc. 2013;4:1–28.
Payne S, Morbey H. Supporting family carers: report on the evidence of how to work with and support family carers to inform the work of the commission into the future of hospice care: a report for the commission into the future of hospice care. http://eprints.lancs.ac.uk/68478/1/Supporting_family_carers.pdf.
Nolan M, Ryan T. Family carers, palliative care and the end-of-life. In: Ingleton C, Gott M, editors. Living with ageing and dying: palliative and end-of-life care for older people. Oxford: Oxford University Press; 2011. p. 170–80.
Health Canada. Canadian strategy on palliative and end-of-life care: final report. Health Canada; 2007. http://www.hc-sc.gc.ca/hcs-sss/pubs/palliat/2007-soin_fin-end_life/index-eng.php.
Commonwealth of Australia. Supporting Australians to Live Well at the End-of-life. National Palliative Care Strategy. 2010. http://www.health.gov.au/internet/main/publishing.nsf/Content/palliativecare-strategy.htm.
Hall S, Petkova H, Tsouros A, Costantini M, Higginson I (eds). Palliative care for older people: better practices. World Health Organization; 2011. http://www.eapcnet.eu/LinkClick.aspx?fileticket=UsdZAJEA5FI%3D&tabid=289.
Department of Health. One chance to get it right, improving people's experience of care in the last few days and hours of life. Leadership Alliance for the Care of Dying People (LACDP); 2014. http://tinyurl.com/mad2kql.
Jack B, O'Brien M. Dying at home: community nurses' views on the impact of informal carers on cancer patients' place of death. Eur J Cancer Care. 2010;19(5):636–42. CrossRef
Korte-Verhoed M, Pasman H, Schwitzer B, Francke A, Onwuteaka-Philipsen B, Deliens L. General practitioners’ perspectives on the avoidability of hospitalizations at the end-of-life: a mixed methods study. Palliat Med. 2014;28(7):949–58. CrossRef
Kristjanson LJ, Leis A, Koop PM, Carriere KC, Mueller B. Family members' care expectations, care perceptions, and satisfaction with advanced cancer care: results of a multi-site pilot study. J Palliat Care. 1997;13(4):5–13. PubMed
Austin L, Ewing G, Grande G. Facilitating a shift to comprehensive carer-led assessment in palliative home care: the CSNAT approach. Poster presentation at Marie Curie Research Conference 28th March, London, UK. BMJ Support Palliat Care. 2014;2014(4):114–5.
Ewing G, Austin L, Grande G. Challenges to implementing comprehensive carer assessment in palliative home care: Findings from a cluster trial. Poster presentation at Marie Curie Research Conference 28th March, London, UK. BMJ Support Palliat Care. 2014;4:115.
Subbe C, Kruger M, Rutherford P, Gemmel L. Validation of a modified early warning score in medical admissions. Q J Med. 2001;94(10):521–6. CrossRef
Creswell JW, Plano Clark VL. Designing and conducting mixed methods research. Thousand Oaks: Sage; 2007.
Keeney S. The Delphi technique. In: Gerrish K, Lacey A, editors. The research process in nursing. 6th ed. Oxford: Wiley Blackwell; 2010. p. 227–36.
Braun V, Clark V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. CrossRef
Hsu C, Sandford B. The Delphi technique: making sense of consensus. Pract Assess Res Eval. 2007;12(10). http://pareonline.net/pdf/v12n10.pdf.
Hasson F, Keeney S, Mckenna H. Research guidelines for the Delphi survey technique. J Adv Nurs. 2000;32(4):1008–15. PubMed
Marie Curie Helper Service. http://ww.mariecurie.org.uk.
Jack B, O'Brien MR, Kirton J, Marley K, Whelan A, Baldry C, et al. Enhancing communication with distressed patients, families and colleagues: the value of the Simple Skills Secrets model of communication for the nursing and healthcare workforce. Nurs Educ Today. 2013;33(12):1550–6. CrossRef
Dying Matters. http://www.dyingmatters.org.
Carers’ Alert Thermometer project website http://www.edgehill.ac.uk/carers.
Brazil K, Bédard M, Willison K, Hode M. Caregiving and its impact on families of the terminally ill. Ageing Ment Health. 2003;7:376–82. CrossRef
- Development of the Carers’ Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study
Mary R O’Brien
Barbara A Jack
- BioMed Central
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