title: Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study.
abstract: OBJECTIVE
  Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.
  
  
  METHODS
  A symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.
  
  
  RESULTS
  Three dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.
  
  
  CONCLUSIONS
  Caregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.
authors: Department of Nursing and Supportive Care Research, Peter MacCallum Cancer Centre, Locked Bag 1 A'Beckett Street, Melbourne, 8006, Victoria, Australia. Anna.ugalde@petermac.org
authors: Anna
authors: A
authors: Ugalde
authors: Meinir
authors: M
authors: Krishnasamy
authors: Penelope
authors: P
authors: Schofield
references: Hosp J. 1992;8(3):21-34
references: 1294448
references: Palliat Med. 2003 Jan;17(1):63-74
references: 12597468
references: Palliat Med. 2004 Mar;18(2):129-36
references: 15046409
references: J Palliat Care. 1999 Summer;15(2):13-20
references: 10425873
references: Cancer. 1991 Sep 1;68(5):1131-40
references: 1913486
references: J Palliat Med. 2000 Fall;3(3):287-300
references: 15859670
references: Ann Oncol. 2005 Jul;16(7):1185-91
references: 15849218
references: J Palliat Care. 2004 Spring;20(1):38-43
references: 15132075
references: Cancer. 2001 Mar 1;91(5):1029-39
references: 11251956
references: Palliat Med. 1999 Jan;13(1):37-44
references: 10320874
references: Int J Palliat Nurs. 2004 Feb;10(2):58-65; discussion 65
references: 15039608
references: Gerontologist. 2000 Dec;40(6):738-46
references: 11131090
references: Clin Nurs Res. 2003 May;12(2):127-44
references: 12741666
references: Psychooncology. 2003 Jan-Feb;12(1):1-7
references: 12548644
references: Support Care Cancer. 2001 Nov;9(8):642-5
references: 11762976
references: Cancer Pract. 1994 May-Jun;2(3):187-93
references: 8055022
references: Cancer Nurs. 2008 Jan-Feb;31(1):2-10
references: 18176125
references: Palliat Med. 2010 Sep;24(6):594-607
references: 20576673
references: Palliat Med. 2010 Sep;24(6):573-93
references: 20562171
references: J Clin Nurs. 1999 Jan;8(1):81-8
references: 10214173
references: BMJ. 2011 Jan 24;342:d142
references: 21262897
references: J Palliat Care. 2002 Summer;18(2):97-104
references: 12164107
references: J Holist Nurs. 2001 Sep;19(3):271-84
references: 11847872
references: Support Care Cancer. 2006 Sep;14(9):943-51
references: 16523266
references: BMC Med Ethics. 2008 Apr 24;9:7
references: 18435846
references: Cancer Nurs. 2003 Aug;26(4):253-9
references: 12886115
references: J Adv Nurs. 1995 May;21(5):837-44
references: 7601990
references: Qual Health Res. 1998 Jan;8(1):48-60
references: 10558326
references: Psychol Aging. 1994 Sep;9(3):372-80
references: 7999322
references: Support Care Cancer. 2003 Oct;11(10):638-43
references: 12905058
references: J Abnorm Psychol. 2001 Nov;110(4):573-84
references: 11727947
references: Psychooncology. 2010 Oct;19(10):1013-25
references: 20014159
references: Cancer Nurs. 2000 Dec;23(6):410-5
references: 11128119
references: Oncol Nurs Forum. 2004 Nov 16;31(6):1105-17
references: 15547633