Hostname: page-component-78c5997874-4rdpn Total loading time: 0 Render date: 2024-11-10T11:54:28.477Z Has data issue: false hasContentIssue false
  • English
  • Français

“Earthly Angels”? A qualitative study of the domiciliary care worker role in meeting the needs of families caring for those dying at home

Published online by Cambridge University Press:  21 October 2013

John Percival ,
Gemma Lasseter ,
Sarah Purdy  and
Lesley Wye
John Percival*
Affiliation:
School of Social and Community Medicine, University of Bristol, United Kingdom
Gemma Lasseter
Affiliation:
School of Social and Community Medicine, University of Bristol, United Kingdom
Sarah Purdy
Affiliation:
School of Social and Community Medicine, University of Bristol, United Kingdom
Lesley Wye
Affiliation:
School of Social and Community Medicine, University of Bristol, United Kingdom
*
Address correspondence and reprint requests to: John Percival, School of Social and Community Medicine, Canynge Hall, 39 Whatley Road, Bristol BS8 2PS. E-mail: john.percival@bristol.ac.uk
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Relatively little attention has been paid to optimum ways in which community-based care services can support family caregivers in the context of end-of-life care at home. This paper addresses such concerns by focusing on the services provided by domiciliary care workers.

Method:

We draw on qualitative formal interviews with 42 family members, 1 patient, and 6 staff, as well as observation sessions and informal interviews with additional family caregivers and staff, to examine the aspects of domiciliary care perceived to be of most value. In particular, we compare and contrast family caregivers' experience of the support provided by generic domiciliary care workers with that of a team of specialist domiciliary care workers.

Results:

Our findings show that specialist domiciliary care workers had sufficient time and expertise to meet family caregivers' physical and emotional needs in sensitive, proactive, and family-centered ways, and that these attributes were not so prominent in the services received from generic domiciliary care workers.

Significance of results:

The availability to families of targeted support from an appropriately trained and carefully monitored team of specialist domiciliary care workers, able to operate flexibly and with staff consistency, appears to be an important foundation on which to build greater confidence in the reality of a good death at home.

Keywords

Domiciliary care workerEnd-of-life careFamily caregiverSupport needs
Type
Original Articles
Information
Palliative & Supportive Care , Volume 12 , Issue 6 , December 2014 , pp. 445 - 453
Copyright
Copyright © Cambridge University Press 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Andersson, M., Ekwall, A., Hallberg, I.R., et al. (2010). The experience of being next of kin to an older person in the last phase of life. Palliative & Supportive Care, 8(1), 17–26.CrossRefGoogle Scholar
Aoun, S.M., Kristjanson, L.J., Currow, D.C., et al. (2005). Caregiving for the terminally ill: At what cost? Palliative Medicine, 19(7), 551–555.Google Scholar
Applebaum, A.J. & Breitbart, W. (2012). Care for the cancer caregiver: A systematic review. Palliative & Supportive Care, 10, 1–22.Google Scholar
Audit Scotland (2008). Review of palliative care services in Scotland. http://www.audit-scotland.gov.uk/docs/health/2008/nr_080821_palliative_care.pdf.Google Scholar
Baxter, K., Glendenning, C., Clarke, S., et al. (2008). Domiciliary care agency responses to increased user choice: Perceived threats, barriers and opportunities from a changing market. final report to the department of health. http://www.york.ac.uk/inst/spru/research/pdf/provider.pdf.Google Scholar
British Broadcasting Corporation (BBC) (2012). Unqualified home care worker figures revealed. http://www.bbc.co.uk/news/health-19944217.Google Scholar
Centre for Workforce Intelligence (CFWI) (2011). The adult social care workforce in England— key facts. http://www.cfwi.org.uk/publications/the-adult-social-care-workforce-in-england-2013-key-facts#.Google Scholar
Department of Health (DH) (2008). End-of-life care strategy: Promoting high-quality care for all adults at the end-of-life. London: HMSO.Google Scholar
Department of Health (DH) (2012). End-of-life care strategy: Fourth annual report. http://www.dh.gov.uk/health/files/2012/10/End-of-Life-Care-Strategy-Fourth-Annual-report-web-version-v2.pdf.Google Scholar
Dr Foster Intelligence (2012). Hospital guide 2011. http://drfosterintelligence.co.uk/wp-ontent/uploads/2011/11/Hospital_Guide_2011.pdf.Google Scholar
Exley, C. & Allen, D. (2007). A critical examination of home care: End-of-life care as an illustrative case. Social Science & Medicine, 65, 2317–2327.Google Scholar
Funk, L., Stajduhar, K.I., Toye, C., et al. (2010). Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research (1998–2008). Palliative Medicine, 24(6), 594–607.Google Scholar
Grande, G.E. & Ewing, G. (2009). Informal carer bereavement outcome: Relation to quality of end-of-life support and achievement of preferred place of death. Palliative Medicine 23(3), 248–256.CrossRefGoogle ScholarPubMed
Grande, G., Stajduhar, K., Aoun, S., et al. (2009). Supporting lay carers in end-of-life care: Current gaps and future priorities. Palliative Medicine, 23, 339–344.Google Scholar
Kwak, J., Salmon, J., Acquaviva, K.D., et al. (2007). Benefits of training family caregivers on experiences of closure during end-of-life care. Journal of Pain and Symptom Management, 33(4), 434–445.Google Scholar
Linderholm, M. & Friedrichsen, M. (2010). A desire to be seen: Family caregivers' experiences of their caring role in palliative home care. Cancer Nursing, 33(1), 28–36.Google Scholar
Marie Curie Cancer Center (2012). Independent evaluation of the Marie Curie Cancer Care Delivering Choice Programme in Somerset and North Somerset. http://www.mariecurie.org.uk/Documents/HEALTHCARE-PROFESSIONALS/commissioning-services/Delivering-Choice-Proramme-in-Somerset-and-North-Somerset-Final-Report.pdf.Google Scholar
National Council for Palliative Care (NCPC) (2011). NCPC Specialist Palliative Care Workforce Survey and Specialist Palliative Care Longitudinal Survey of English cancer networks, 2010. http://ncpc.org.uk/publication/specialist-palliative-care-workforce-survey.Google Scholar
National End-of-Life Care Programme (NEoLCP) (2012). Developing end-of-life care practice: A guide to workforce development to support social care and health workers to apply the common core principles and competences for end-of-life care. http://www.endoflifecareforadults.nhs.uk/publications/corecompetencesframework.Google Scholar
Office for National Statistics (ONS) (2012). National Bereavement Survey (VOICES), 2011. http://www.ons.gov.uk/ons/dcp171778_269914.pdf.Google Scholar
Patient and Client Council (2012). Care at home: Older people's experiences of domiciliary care. http://www.patientclientcouncil.hscni.net/uploads/research/Care_at_Home.pdf.Google Scholar
Royal College of Nursing (RCN) (2012). District nursing concerns. http://www.rcn.org.uk/newsevents/news/article/eastern_stories/concern_about_cuts_in_district_nursing.Google Scholar
Seymour, J., Payne, S., Chapman, A., et al. (2007). Hospice or home? Expectations of end-of-life care among white and Chinese older people in the UK. Sociology of Health & Illness, 29(6), 872–890.CrossRefGoogle ScholarPubMed
Silverman, D. (2006). Interpreting qualitative data: Methods for analysing talk, text and interaction, 3rd ed.London: Sage.Google Scholar
Skills for Care (2010). The state of the adult social care workforce in England, 2010. http://www.skillsforcare.org.uk/research/research_reports/state_of_the_adult_social_care_workforce_reports.aspx.Google Scholar
Skills for Care (2012). Common core principles and competences for end-of-life care. http://www.skillsforcare.org.uk/publications/publications_c.aspx.Google Scholar
Stajduhar, K.I., Martin, W.L., Barwich, D., et al. (2008). Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home. Cancer Nursing, 31(1), 77–85.Google Scholar
Stajduhar, K.I., Funk, L., Toye, C., et al. (2010). Part 1: Home-based family caregiving at the end of life: A comprehensive review of published quantitative research (1998–2008). Palliative Medicine 24(6), 573–593.Google Scholar
Watson, H. (2011). Challenges of domiciliary carers when providing end-of-life care. End of Life Journal (online). http://endoflifejournal.stchristophers.org.uk/professional-issues/challenges-of-domiciliary-carers-when-providing-end-of-life-care.Google Scholar
Williams, A.-L. & McCorkle, R. (2011). Cancer family caregivers during the palliative, hospice, and bereavement phases: A review of the descriptive psychosocial literature. Palliative & Supportive Care, 9(3), 315–325.Google Scholar