Are family carers part of the care team providing end-of-life care? A qualitative interview study on the collaboration between family and professional carers

Abstract

Background:

The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context.

Aim:

This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life.

Design:

Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data.

Setting/participants:

A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness.

Results:

Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes.

Conclusions:

This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.

Keywords

Palliative care caregivers chronic disease

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References

National Alliance for Caregiving, AARP Public Policy Institute. Caregiving in the U.S. [Internet]. Bethesda, MD: National Alliance for Caregiving and the AARP Public Policy Institute, 2015. https://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Final-Report-June-4_WEB.pdf

Zavagli

Raccichini

Ercolani

, et al. Care for carers: an investigation on family caregivers’ needs, tasks, and experiences. Transl Med UniSa 2019; 19: 54–59.

Colombo

Llena-Nozal

Mercier

, et al. Help wanted? Providing and paying for long-term care. OECD Publishing, 2011.

Payne

Hudson

Grande

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

Carlsen

Lundberg

. ‘If it weren’t for me. . .’: perspectives of family carers of older people receiving professional care. Scand J Caring Sci 2018; 32(1): 213–221.

Morin

Aubry

Frova

, et al. Estimating the need for palliative care at the population level: a cross-national study in 12 countries. Palliat Med 2017; 31(6): 526–536.

Etkind

Bone

Gomes

, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med 2017; 15(1): 102.

Higginson

Sen-Gupta

GJA

. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000; 3(3): 287–300.

Gomes

Calanzani

Higginson

. Local preferences and place of death in regions within England 2010. London: Cicely Saunders International, 2011, p. 24.

10.

Gomes

Calanzani

Gysels

, et al. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care 2013; 12(1).

11.

Attridge

Richardson

. 6 Compassionate neighbours – an innovative model building caring communities. BMJ Support Palliat Care 2018; 8(3): 362.

12.

Compassionate Neighbours [Internet]. Compassionate Neighbours, 2020. https://compassionateneighbours.org/

13.

Funk

Stajduhar

Toye

, et al. 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.

14.

Mason

Hodgkin

. Preparedness for caregiving: a phenomenological study of the experiences of rural Australian family palliative carers. Health Soc Care Commun 2019; 27(4): 926–935.

15.

World Health Organization. Framework for action on interprofessional education & collaborative practice, 2010, 1–64.

16.

Ris

Schnepp

Mahrer Imhof

. An integrative review on family caregivers’ involvement in care of home-dwelling elderly. Health Soc Care Commun 2018; 1–17.

17.

Beernaert

Deliens

De Vleminck

, et al. Is there a need for early palliative care in patients with life-limiting illnesses? Interview study with patients about experienced care needs from diagnosis onward. Am J Hosp Palliat Care 2016; 33(5): 489–497.

18.

Hudson

Remedios

Zordan

, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med 2012; 15(6): 696–702.

19.

Pfaff

Markaki

. Compassionate collaborative care: an integrative review of quality indicators in end-of-life care. BMC Palliat Care 2017; 16(1).

20.

Morley

Cashell

. Collaboration in health care. J Med Imaging Radiat Sci 2017; 48(2): 207–216.

21.

Danielsen

Sand

Rosland

, et al. Experiences and challenges of home care nurses and general practitioners in home-based palliative care – a qualitative study. BMC Palliat Care 2018; 17(1).

22.

Stajduhar

Funk

Toye

, et al. 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.

23.

Wittenberg

Kwekkeboom

Staaks

, et al. Informal caregivers’ views on the division of responsibilities between themselves and professionals: a scoping review. Health Soc Care Commun 2017; 1–14.

24.

Hengelaar

van Hartingsveldt

Wittenberg

, et al. Exploring the collaboration between formal and informal care from the professional perspective: a thematic synthesis. Health Soc Care Commun 2017; 26(4): 474–485.

25.

Quinn

Schmitt

Baggs

, et al. Family members’ informal roles in end-of-life decision making in adult intensive care units. Am J Crit Care 2012; 21(1): 43–51.

26.

Lamore

Montalescot

Untas

. Treatment decision-making in chronic diseases: what are the family members’ roles, needs and attitudes? A systematic review. Patient Educ Couns 2017; 100(12): 2172–2181.

27.

Reigada

Pais-Ribeiro

Novella

, et al. The caregiver role in palliative care: a systematic review of the literature. Health Care Curr Rev 2015; 3(2).

28.

Manthorpe

Iliffe

Eden

. Testing Twigg and Atkin’s typology of caring: a study of primary care professionals’ perceptions of dementia care using a modiﬁed focus group method. Health Soc Care Commun 2003; 11(6): 477–485.

29.

Stajduhar

Nickel

Martin

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

30.

Stephan

Möhler

Renom-Guiteras

, et al. Successful collaboration in dementia care from the perspectives of healthcare professionals and informal carers in Germany: results from a focus group study. BMC Health Serv Res 2015; 15: 208.

31.

Equator Network. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. https://www.equator-network.org/reporting-guidelines/coreq/

32.

Reisberg

Ferris

De Leon

, et al. The global deterioration scale for assessment of primary degenerative dementia. Am J Psychiatry 1982; 139(9): 1136–1139.

33.

Van Rickstal

De Vleminck

Aldridge

, et al. Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: an exploratory interview-study with family caregivers. Palliat Med 2019; 33(9): 1166–1175.

34.

Hartman

. Diagrammatic assessment of family relationships. Fam Soc J Contemp Soc Serv 1995; 1: 111–122.

35.

Tishelman

Eneslätt

Menkin

, et al. Developing and a using structured, conversation-based intervention for clarifying values and preferences for end-of-life in the advance care planning-naïve Swedish context: action research within the Döbra research program. Death Stud 2019; 1–13.

36.

Ray

Street

. Non-finite loss and emotional labour: family caregivers’ experiences of living with motor neurone disease. J Clin Nurs 2007; 16(3A): 35–42.

37.

Larkin

Watts

Clifton

. Giving voice and making sense in interpretative phenomenological analysis. Qual Res Psychol 2006; 3(2): 102–120.

38.

Sallnow

Paul

. New public health approaches to end-of-life care. In: MacLeod

Van den Block

(eds). Textbook of palliative care. Cham: Springer International Publishing.

39.

Sallnow

Paul

. Understanding community engagement in end-of-life care: developing conceptual clarity. Crit Public Health 2015; 25(2): 231–238.

40.

Payne

Hudson

. Assesing the family and caregivers. In: Walsh

Caraceni

Fainsinger

, et al. (eds), Palliative medicine, 1st ed. New York: Elsevier, 2018, pp. 320–325.

41.

Aoun

Kristjanson

Currow

, et al. Caregiving for the terminally ill: at what cost. Palliat Med 2005; 19: 551–555.

42.

Grande

Stajduhar

Aoun

, et al. Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med 2009; 23: 339–344.

43.

Hudson

Thomas

Trauer

, et al. Psychosocial and social profile of family caregivers on commencement of palliative care. J Pain Symptom Manage 2011; 41(3): 522–534.

44.

Haley

LaMonde

Han

, et al. Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hospice J 2001; 15(4): 1–18.

45.

Caswell

Pollock

Harwood

, et al. Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study. BMC Palliat Care 2015; 14: 35.

46.

Cherlin

Fried

Prigerson

, et al. Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said? J Palliat Med 2005; 8(6): 1176–1185.

47.

Hebert

Schulz

Copeland

, et al. Preparing family caregivers for death and bereavement: insights from caregivers of terminally ill patients. J Pain Symptom Manage 2009; 37(1): 3–12.

48.

Breen

Aoun

O’Connor

, et al. Family caregivers’ preparations for death: a qualitative analysis. J Pain Symptom Manage 2018; 55(6): 1473–1479.

49.

Hudson

Quinn

O’Hanlon

, et al. Family meetings in palliative care: multidisciplinary clinical practice guidelines. BMC Palliat Care 2008; 7: 12.

50.

Hudson

Thomas

Quinn

, et al. Family meetings in palliative care: are they effective? Palliat Med 2009; 23(2): 150–157.

51.

van der Plas

Francke

Vissers

, et al. Case management in primary palliative care is associated more strongly with organisational than with patient characteristics: results from a cross-sectional prospective study. BMC Palliat Care 2015; 14: 31.

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