The role of the Carer Support Needs Assessment Tool in palliative home care: A qualitative study of practitioners’ perspectives of its impact and mechanisms of action

Abstract

Background:

The importance of supporting family carers is well recognised in healthcare policy. The Carer Support Needs Assessment Tool is an evidence-based, comprehensive measure of carer support needs to facilitate carer support in palliative home care.

Aim:

To examine practitioner perspectives of the role of the Carer Support Needs Assessment Tool intervention in palliative home care to identify its impact and mechanisms of action.

Design:

Qualitative – practitioner accounts of implementation (interviews, focus groups, reflective audio diaries) plus researcher field notes.

Setting/participants:

A total of 29 staff members from two hospice home-care services – contrasting geographical locations, different service sizes and staff composition. A thematic analysis was conducted.

Results:

Existing approaches to identification of carer needs were informal and unstructured. Practitioners expressed some concerns, pre-implementation, about negative impacts of the Carer Support Needs Assessment Tool on carers and expectations raised about support available. In contrast, post-implementation, the Carer Support Needs Assessment Tool provided positive impacts when used as part of a carer-led assessment and support process: it made support needs visible, legitimised support for carers and opened up different conversations with carers. The mechanisms of action that enabled the Carer Support Needs Assessment Tool to make a difference were creating space for the separate needs of carers, providing an opportunity for carers to express support needs and responding to carers’ self-defined priorities.

Conclusion:

The Carer Support Needs Assessment Tool delivered benefits through a change in practice to an identifiable, separate assessment process for carers, facilitated by practitioners but carer-led. Used routinely with all carers, the Carer Support Needs Assessment Tool has the potential to normalise carer assessment and support, facilitate delivery of carer-identified support and enable effective targeting of resources.

Keywords

Carers needs assessment expressed need palliative care evidence-based practice qualitative research

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.

Schulz

Beach

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

McNamara

Rosenwax

. Which carers of family members at the end of life need more support from health services and why? Soc Sci Med 2010; 70(7): 1035–1041.

Candy

Jones

Drake

. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev 2011; 6: CD007617.

Harding

List

Epiphaniou

. How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliat Med 2012; 26: 7–22.

National Institute for Clinical Excellence (NICE). Guidance on cancer services. Improving supportive and palliative care for adults with cancer. The manual. London: NICE, 2004.

Department of Health. End of Life Care Strategy: promoting high quality care for all adults at the end of life. London: Department of Health, 2008.

Palliative Care Australia (PCA). Standards for providing quality palliative care for all Australians. Canberra, ACT, Australia: PCA, 2005.

Canadian Hospice Palliative Care Association. A model to guide hospice palliative care. Ottawa, ON, Canada: Canadian Hospice Palliative Care Association, 2013.

10.

Department of Health. End of Life Care Strategy: quality markers and measures for end of life care. London: Department of Health, 2009.

11.

Ewing

Grande

; on behalf of the National Association for Hospice at Home. 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.

12.

Stajduhar

Nickel

Martin

. Situated/being situated: client and co-worker roles of family caregivers in hospice palliative care. Soc Sci Med 2008; 67(11): 1789–1797.

13.

Ewing

Brundle

Payne

. 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.

14.

Medical Research Council (MRC). A framework for development and evaluation of RCTs for complex interventions to improve health, 2000, http://www.mrc.ac.uk/documents/pdf/rcts-for-complex-interventions-to-improve-health/

15.

Ritchie

Spencer

. Qualitative data analysis for applied policy research. In: Bryman

Burgess

(eds) Analyzing qualitative data. London: Routledge, 1994, pp. 173–194.

16.

Grande

Austin

Ewing

. Investigating the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: stepped wedge cluster trial. Palliat Med 2014; 28(6): 609–610.

17.

Aoun

Grande

Howting

. The impact of the Carer Support Needs Assessment Tool (CSNAT) in community palliative care using a stepped wedge cluster trial. PLoS ONE 2015; 10(4): e0123012.

18.

Payne

Hudson

Grande

. White paper on improving support for family carers in palliative care: part 1. Eur J Palliat Care 2010; 17(5): 238–245.

19.

Rabow MW Hauser JM Adams J.

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

20.

Harding

Higginson

. Working with ambivalence: informal caregivers of patients at the end of life. Support Care Cancer 2001; 9(8): 642–645.

21.

DiGiacomo

Lewis

Nolan

. Transitioning from caregiving to widowhood. J Pain Symptom Manage 2013; 46(6): 817–825.

22.

Cain

Maclean

Sellick

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

23.

Aranda

Hayman-White

. Home caregivers of the person with advanced cancer: an Australian perspective. Cancer Nurs 2001; 24(4): 300–307.

24.

Mangan

Taylor

Yabroff

. Caregiving near the end of life: unmet needs and potential solutions. Palliat Support Care 2003; 1(3): 247–259.

25.

Stenberg

Ruland

Miaskowski

. Review of the literature on the effects of caring for a patient with cancer. Psychooncology 2010; 19(10): 1013–1025.

26.

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.

27.

Funk

Stajduhar

Toye

. 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.

28.

Carduff

Finucane

Kendall

. 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.

29.

Aoun

Deas

Toye

. Supporting family caregivers to identify their own needs in end-of-life care: qualitative findings from a stepped wedge cluster trial. Palliat Med 2015; 29: 508–517.

30.

Nolan

Grant

Keady

. New directions for partnerships: relationship-centred care. In: Nolan

Lundh

Grant

. (eds) Partnerships in family care. Maidenhead: Open University Press, 2003, pp.257–291.

31.

National Cancer Action Team. Holistic Needs Assessment for people with cancer: a practical guide for healthcare professionals. London: National Cancer Action Team, 2011.