Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial

Abstract

Introduction:

The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care.

Aim:

To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care.

Methods:

This study was conducted during 2012–2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis.

Results:

The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced.

Conclusion:

Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers’ needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of family caregivers.

Keywords

Family caregivers home-based palliative care Carer Support Needs Assessment Tool support needs needs assessment

Get full access to this article

View all access options for this article.

References

Aoun

Kristjanson

Currow

. Caregiving for the terminally ill: at what cost? Palliat Med 2005; 19(7): 551–555. DOI:10.1191/0269216305pm1053oa.

Schulz

Beach

. Caregiving as a risk factor for mortality—the caregiver health effects study. JAMA 1999; 282(23): 2215–2219.

Stajduhar

Funk

Toye

. 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): 573–593. DOI:10.1177/0269216310371412.

Grande

Stajduhar

Aoun

. Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med 2009; 23(4): 339–344. DOI:10.1177/0269216309104875.

Ferrario

Cardillo

Vicario

. Advanced cancer at home: caregiving and bereavement. Palliat Med 2004; 18(2): 129–136. DOI:10.1191/0269216304pm870oa.

Grande

Ewing

; on behalf of the National Forum for Hospice at Home. Informal carer bereavement outcome: relation to quality of end of life support and achievement of preferred place of death. Palliat Med 2009; 23(3): 248–256. DOI:10.1177/0269216309102620.

Grande

Farquhar

Barclay

SIG

. Caregiver bereavement outcome: relationship with hospice at home, satisfaction with care, and home death. J Palliat Care 2004; 20(2): 69–77.

Christakis

Iwashyna

. The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Soc Sci Med 2003; 57(3): 465–475.

National Institute for Clinical Excellence (NICE). Guidance on cancer services improving supportive and palliative care for adults with cancer. Oxford: NICE, 2004.

10.

Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. Crown copyright, 2008, http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277

11.

Palliative Care Australia. National Standards Assessment Program: national quality report. Deakin West, ACT, Australia: Palliative Care Australia, 2010, http://www.standards.palliativecare.org.au/Portals/20/NSAP%20National%20Quality%20Report.pdf

12.

Commonwealth of Australia. National palliative care strategy. Barton, ACT, Australia: Commonwealth of Australia, 2010, http://www.health.gov.au/internet/main/publishing.nsf/Content/palliativecare-strategy.htm

13.

Carstairs

Keon

. Canada’s aging population: seizing the opportunity: special Senate Committee on Aging—final report. Ottawa, ON, Canada, 2009, http://www.senate-senat.ca/age.asp

14.

Hudson

Trauer

Graham

. A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med 2010; 24(7): 656–668.

15.

Ewing

Grande

. Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: a qualitative study. Palliat Med 2013; 27(3): 244–256. DOI:10.1177/0269216312440607.

16.

Help the Hospices. Identifying carers’ needs in the palliative setting. Report, Carer Assessment Working Group, 2009, http://www.hospiceuk.org/what-we-offer/publications?cat=842a4112-4ccd-608d-ad24-ff0000fd3330

17.

Ewing

Brundle

Payne

Grande

. 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. DOI:10.1016/j.jpainsymman.2012.09.008.

18.

Aoun

Grande

Howting

. The impact of the Carer Support Needs Assessment Tool (CSNAT) in community palliative care using a Stepped Wedge Cluster Trial (manuscript submitted for publication, 2014).

19.

Hsieh

H-F

Shannon

. Three approaches to qualitative content analysis. Qual Health Res 2005; 15(9): 1277–1288. DOI:10.1177/1049732305276687.

20.

Guest

MacQueen

Namey

. Applied thematic analysis. London: SAGE, 2012.

21.

NVivo qualitative data analysis software; QSR International Pty Ltd. Version 10, 2012, https://www.qsrinternational.com/support_faqs_detail.aspx?view=1

22.

Creswell

. Qualitative inquiry and research design: choosing among five perspectives. Thousand Oaks, CA; London: SAGE, 2007.

23.

Cain

Maclean

Sellick

. Giving support and getting help: informal caregivers’ experiences with palliative care services. Palliat Support Care 2004; 2(3): 265–272. DOI:10.1017/S1478951504040350.

24.

Rabow

Hauser

Adams

. Supporting family caregivers at the end of life: they don’t know what they don’t know. JAMA 2004; 291(4): 483–491.

25.

Burns

Abernethy

Dal Grande

. Uncovering an invisible network of direct caregivers at the end of life: a population study. Palliat Med 2013; 27(7): 608–615. DOI:10.1177/0269216313483664.

26.

Hunt

Shlomo

Addington-Hall

. Participant recruitment in sensitive surveys: a comparative trial of “opt in” versus “opt out” approaches. BMC Med Res Methodol 2013; 13(1): 3.

27.

Ewing

Austin

Grande

. Using the Carer Support Needs Assessment Tool (CSNAT) in practice: what have we learned? (Abstracts of the 7th World Research Congress of the European Association for Palliative Care (EAPC)). Palliat Med 2012; 26(4): 630–631. DOI:10.1177/0269216312446391.