title: Family carers providing support to a person dying in the home setting: A narrative literature review.
abstract: BACKGROUND
  This study is based on people dying at home relying on the care of unpaid family carers. There is growing recognition of the central role that family carers play and the burdens that they bear, but knowledge gaps remain around how to best support them.
  
  
  OBJECTIVE
  The aim of this study is to review the literature relating to the perspectives of family carers providing support to a person dying at home.
  
  
  METHODS
  A narrative literature review was chosen to provide an overview and synthesis of findings. The following search terms were used: caregiver, carer, 'terminal care', 'supportive care', 'end of life care', 'palliative care', 'domiciliary care' AND home AND death OR dying.
  
  
  METHODS
  During April-May 2013, Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, Pubmed, Cochrane Reviews and Citation Indexes were searched. Inclusion criteria were as follows: English language, empirical studies and literature reviews, adult carers, perspectives of family carers, articles focusing on family carers providing end-of-life care in the home and those published between 2000 and 2013.
  
  
  RESULTS
  A total of 28 studies were included. The overarching themes were family carers' views on the impact of the home as a setting for end-of-life care, support that made a home death possible, family carer's views on deficits and gaps in support and transformations to the social and emotional space of the home.
  
  
  CONCLUSIONS
  Many studies focus on the support needs of people caring for a dying family member at home, but few studies have considered how the home space is affected. Given the increasing tendency for home deaths, greater understanding of the interplay of factors affecting family carers may help improve community services.
authors: Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
authors: Sara M
authors: SM
authors: Morris
authors: Health and Care Directorate, Cumbria County Council, Carlisle, UK.
authors: Claire
authors: C
authors: King
authors: Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
authors: Mary
authors: M
authors: Turner
authors: Faculty of Health and Medicine, Lancaster University, Lancaster, UK s.a.payne@lancaster.ac.uk.
authors: Sheila
authors: S
authors: Payne
mesh_terms: D017028:Caregivers / Q000523:psychology*; D005190:Family / Q000523:psychology; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D010166:Palliative Care / Q000523:psychology*; D013727:Terminal Care / Q000523:psychology*
keywords: caregivers; end of life care; family carers; home; palliative care; review; terminal care
references: J Health Serv Res Policy. 2005 Jan;10(1):45-53
references: 15667704
references: Soc Sci Med. 2002 Jul;55(1):141-54
references: 12137183
references: Int J Palliat Nurs. 2001 May;7(5):240-7
references: 12148975
references: Palliat Med. 2013 Jul;27(7):608-15
references: 23587738
references: Soc Sci Med. 2002 Feb;54(4):529-44
references: 11848273
references: J Clin Nurs. 2009 May;18(10):1379-93
references: 18624779
references: N Engl J Med. 2003 Nov 13;349(20):1936-42
references: 14614169
references: J Clin Nurs. 2006 Sep;15(9):1158-69
references: 16911057
references: Eur J Oncol Nurs. 2002 Jun;6(2):100-6
references: 12849600
references: Scand J Caring Sci. 2003 Jun;17(2):113-21
references: 12753511
references: Australas Med J. 2011;4(9):495-9
references: 23393541
references: Am J Hosp Palliat Care. 2010 Mar;27(2):111-6
references: 20008823
references: Soc Sci Med. 2010 Apr;70(7):1035-41
references: 20116158
references: Palliat Med. 2004 Jul;18(5):460-7
references: 15332424
references: Palliat Med. 2003 Oct;17(7):608-15
references: 14594152
references: Cancer Nurs. 2010 Jan-Feb;33(1):28-36
references: 19926979
references: Palliat Med. 2010 Sep;24(6):594-607
references: 20576673
references: Palliat Med. 2005 Jan;19(1):21-32
references: 15690865
references: Palliat Support Care. 2003 Jun;1(2):171-80
references: 16594279
references: Cochrane Database Syst Rev. 2013;6:CD007760
references: 23744578
references: Int J Palliat Nurs. 2011 Aug;17(8):398-404
references: 22067680
references: Scand J Caring Sci. 2007 Jun;21(2):274-81
references: 17559447
references: Palliat Med. 2009 Jun;23(4):339-44
references: 19304804
references: J Clin Nurs. 2011 Apr;20(7-8):1097-105
references: 21040038
references: Eur J Oncol Nurs. 2005 Dec;9(4):315-24
references: 16310139
references: Cochrane Database Syst Rev. 2011;(6):CD007617
references: 21678368
references: J Pain Symptom Manage. 2012 Oct;44(4):552-62
references: 22575721
references: Support Care Cancer. 2012 Sep;20(9):1975-82
references: 22072049
references: Palliat Support Care. 2008 Dec;6(4):349-56
references: 19006589
references: Health Soc Care Community. 2009 May;17(3):274-82
references: 19207604
references: J Palliat Care. 2003 Spring;19(1):27-35
references: 12710112
references: J Palliat Med. 2003 Oct;6(5):749-56
references: 14622454
references: Scand J Caring Sci. 2012 Sep;26(3):513-8
references: 22117607
references: Psychooncology. 2007 Aug;16(8):741-51
references: 17106866
references: Clin Nurs Res. 2009 Feb;18(1):80-97
references: 19208822