Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: A mixed method consensus study

BMC Palliative Care

Volumn 14, Issue 1, 2015, Pages

  Knighting, Katherine ^a   O'Brien, Mary R ^a   Roe, Brenda ^a   Gandy, Rob ^b   Lloyd Williams, Mari ^c   Nolan, Mike ^d   Jack, Barbara A ^a  

^a EDGE HILL UNIVERSITY   (United Kingdom)

^b LIVERPOOL JOHN MOORES UNIVERSITY   (United Kingdom)

^c UNIVERSITY OF LIVERPOOL   (United Kingdom)

^d UNIVERSITY OF SHEFFIELD   (United Kingdom)

Author keywords

Caregivers; Carers; End of life care; Home care; Needs assessment; Palliative care

Indexed keywords

ADULT; ARTICLE; CAREGIVER; CAREGIVER BURDEN; CARER ALERT THERMOMETER; CONSENSUS; CONSULTATION; CONTROLLED STUDY; DELPHI STUDY; DYING; FEMALE; HOME CARE; HUMAN; MALE; TERMINAL CARE; THERMOMETER; UNITED KINGDOM; WELLBEING; ADVANCE CARE PLANNING; ECONOMICS; EMERGENCY; ENGLAND; FAMILY; HEALTH STATUS; HUMAN RELATION; MENTAL HEALTH; NEEDS ASSESSMENT; ORGANIZATION AND MANAGEMENT; PSYCHOLOGY; RESPITE CARE; SOCIOECONOMICS; TIME FACTOR;

ADVANCE CARE PLANNING; CAREGIVERS; EMERGENCIES; ENGLAND; FAMILY; HEALTH STATUS; HUMANS; MENTAL HEALTH; NEEDS ASSESSMENT; PROFESSIONAL-FAMILY RELATIONS; RESPITE CARE; SOCIOECONOMIC FACTORS; TERMINAL CARE; TIME FACTORS;

EID: 84929303310     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/s12904-015-0010-6     Document Type: Article

References (47)

1. Broad JB, Gott M, Kim H, Chen H, Connolly MJ. Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics. Int J Public Health. 2013;58(2):257-67.
2. Leadbeater C, Garber J. Dying for change. http://www.demos.co.uk/files/Dying-for-change---web---final-1-.pdf.
3. 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.
4. Gomes B, Calanzani N, Higginson IJ. Reversal of the British trends in place of death: time series analysis 2004-2010. Palliat Med. 2012;26(2):102-7.
5. 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.
6. 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.
7. 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.
8. 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.
9. Social Care Institute for Excellence. Dying well at home: the case for integrated working. http://www.scie.org.uk/publications/guides/guide48/.
10. 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.
11. Carduff E, Finucane A, Kendall M, Jarvis A, Harrison N, Greenacre J, et al. Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources. BMC Fam Pract. 2014;15(1):48.
12. 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.
13. 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.
14. 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.
15. Burns C, Abernethy A, Dal Grande E, Currow D. Uncovering an invisible network of direct caregivers at the end of life: a population study. Palliat Med. 2013;27(7):608-15.
16. 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.
17. 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.
18. 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.
19. 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.
20. 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.
21. Stajduhar K, Funk L, Toye C, Grande G, Aoun S, Todd C. Part 1: home-based family caregiving at the end-of-life: a comprehensive review of published quantitative research (1998-2008). Palliat Med. 2010;24(6):573-93.
22. Funk L, Stajduhar K, Toye C, Aoun S, Grande GE, Todd CJ. Part 2: home-based family caregiving at the end-of-life: a comprehensive review of published qualitative research (1998-2008). Palliat Med. 2010;24(6):594-607.
23. Gardiner C, Brereton L, Frey R, Wilkinson-Meyers L, Gott M. Exploring the financial impact of caring for family members receiving palliative and end-of-life care: a systematic review of the literature. Palliat Med. 2014;28(5):375-90.
24. 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.
25. 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.
26. Hudson P, Trauer T, Graham S, Grande G, Ewing G, Payne S, et al. A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med. 2010;24(7):656-68.
27. Salmon JR, Kwak J, Acquaviva K, Egan K, Brandt K. Validation of the Caregiving at Life's End questionnaire. Am J Hosp Palliat Care. 2005;22(3):188-94.
28. 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.
29. Ewing G, Grande G. Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: a qualitative study. Palliat Med. 2012;27(3):244-56.
30. Ewing G, Brundle C, Payne S, Grande G. The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study. J Pain Symptom Manage. 2013;46(3):395-405.
31. 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.
32. 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.
33. 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.
34. Creswell JW, Plano Clark VL. Designing and conducting mixed methods research. Thousand Oaks: Sage; 2007.
35. Malcolm C, Knighting K, Forbat L, Kearney N. Prioritisation of future research topics for children's hospice care by its key stakeholders: a Delphi study. Palliat Med. 2009;23(5):398-405.
36. Keeney S, Hasson F, McKenna H. Consulting the oracle: ten lessons from using the Delphi technique in nursing research. J Adv Nurs. 2006;53(2):205-12.
37. 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.
38. Braun V, Clark V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.
39. Hsu C, Sandford B. The Delphi technique: making sense of consensus. Pract Assess Res Eval. 2007;12(10). http://pareonline.net/pdf/v12n10.pdf.
40. Hasson F, Keeney S, Mckenna H. Research guidelines for the Delphi survey technique. J Adv Nurs. 2000;32(4):1008-15.
41. Marie Curie Helper Service. http://ww.mariecurie.org.uk.
42. Harding R, Higginson I. Working with ambivalence: informal care givers of patients at the end-of-life. Support Care Cancer. 2001;9:642-5.
43. Hegarty M, Abernethy A, Olver I, Currow D. Former palliative caregivers who identify that additional spiritual support would have been helpful in a population survey. Palliat Med. 2011;25(3):266-77.
44. 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.
45. Dying Matters. http://www.dyingmatters.org.
46. Carers' Alert Thermometer project website http://www.edgehill.ac.uk/carers.
47. 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.