This ethnographic study examined the social context of home-based palliative caregiving. Data were composed of observation field notes, interviews, and textual documents, and were analyzed using constant comparative methods. Findings show that home-based palliative caregiving resulted in life-enriching experiences for many caregivers. However, assumptions about dying at home and health care reforms resulted in some caregivers feeling “pressured” to provide home care, and consequently, left them feeling their obligations to care were exploited by the health care system. Shifts toward providing care closer to home not only changed caregivers, but also changed the home setting where palliative care was provided. Findings indicate a need for interventions designed to improve support for caregivers at home, and to explore how assumptions influence and sometimes drive the provision of home health care.
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References
1.
FastJ.E., KeatingN.C.Family Caregiving and Consequences for Carers: towards a policy research agenda. CPRN Discussion Paper No. F/10.Ottawa: Canadian Policy Research Network, 2000.
2.
KaneR.L.Introduction. In: KaneR.L., EvansJ.G., MacFadyenD. (eds). Improving the Health of Older People: a world view.New York: Oxford University Press, 1990; pp. 341–345.
MountB.M., ScottJ., CohenS.R.Canada: status of cancer pain and palliative care. J Pain Symptom Manage1993; 8(6); 395–398.
5.
ChappellN.L.Maintaining the integrity of home care. Healthcare Papers.Toronto: Longwoods Publishing Co., 2000. Available at: http://www.longwoods.eom/hp/fall00/9.html
6.
AlcockD., DanbrookC., WalkerD., HuntC.Home care clients, providers and costs. Can J Public Health1998; 89(5): 297–300.
7.
McWhinneyR.R., StewartM.A.Home care of dying patients: family physicians’ experience with a palliative care support team. Can Fam Physician1994; 40: 240–246.
8.
ArandaS.K., Hayman-WhiteK.Home caregivers of the person with advanced cancer: an Australian perspective. Cancer Nurs2001; 24(4): 300–307.
9.
WilsonD.M., NorthcottH.C., TrumanC.D., SmithS.L., AndersonM.C., FainsingerR.L., StinglM.J.Location of death in Canada: a comparison of 20th century hospital and nonhospital locations of death and corresponding population trends. Eval Health Prof2001; 24(4): 385–403.
10.
AndersonM., ParentK.Putting a face on home care.Kingston, Ontario: Queen's Health Policy Research Unit, 1999.
11.
PayneS., SmithP., DeanS.Identifying the concerns of informal carers in palliative care. Palliat Med1999; 13(1): 37–44.
12.
WyattG.K., FriedmanL., GivenC.W., GivenB.A.A profile of bereaved caregivers following provision of terminal care. J Palliat Care1999; 15(1): 13–25.
13.
CameronJ.I., FrancheR.L., CheungA.M., StewartD.E.Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer2002; 94(2): 521–527.
14.
HaleyW.E., LaMondeL.A., HanB., NarramoreS., SchonwetterR.Family caregiving in hospice: effects on psychological health and functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J2001; 15(4): 1–18.
15.
Chentsova-DuttonY., ShucterS., HutchinS., StrauseL., BurnsK., DunnL., MillerM., ZisookS.Depression and grief reactions in hospice caregivers: from pre-death to one year afterwards. J Affect Disord2002; 69(1–3): 53–60.
16.
EmanuelE.J., FaircloughD.L., SlutsmanJ., EmanuelL.L.Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med2000; 132(6): 451–459.
17.
ThorpeG.Enabling more dying people to remain at home. BMJ1993; 307(6909): 915–918.
18.
SankarA.Images of home death and the elderly patient: romantic versus real. Generations1993; 17(2): 59–63.
19.
SeatonH.Closer to Home: summary of the report of the British Columbia Royal Commission on health care and costs.Victoria, British Columbia: Crown, 1991.
20.
KinsellaG., CooperB., PictonC., MurtaghD.Factors influencing outcomes for family caregivers of persons receiving palliative care: toward an integrated model. J Palliat Care2000; 16(3): 46–54.
21.
GrbichC., ParkerD., MaddocksI.The emotions and coping strategies of caregivers of family members with terminal cancer. J Palliat Care2001; 17(1): 30–36.
22.
BrownP., DaviesB., MartensN.Families in supportive care – Part II: Palliative care at home: a viable care setting. J Palliat Care1990; 6(3): 21–27.
23.
GilbarO., SteinerM.When death comes: where should people die?Hosp J1996; 11(1): 31–49.
24.
MartensN., DaviesB.The work of patients and spouses in managing advanced cancer at home. In: KirschlingJ.M. (ed). Family Based Palliative Care.New York: Haworth Press, 1990; pp. 55–73.
HammersleyM., AtkinsonP.Ethnography: principles in practice. 2nd edition.New York: Routledge, 1996.
27.
MorseJ.M.Strategies for sampling. In: MorseJ.M. (ed). Qualitative Nursing Research: a contemporary dialogue.Newbury Park, California: Sage, 1991; pp. 127–145.
28.
AdlerP.A., AdlerP.A.Observational techniques. In: DenzinN.K., LincolnY.S. (eds). Handbook of Qualitative Research.Thousand Oaks: Sage, 1994; pp. 377–392.
29.
BernardR.Participant observation. In: BernardR. (ed). Research Methods in Anthropology.Newbury Park, California: Sage, 1994; pp. 136–164.
30.
EmersonR.M., FretzR.I., ShawL.L.Writing Ethnographic Fieldnotes.Chicago: The University of Chicago Press, 1995.
31.
FontanaA., FreyJ.H.Interviewing: the art of science. In: DenzinN.K., LincolnY.S. (eds). Handbook of Qualitative Research.Thousand Oaks: Sage, 1994; pp. 361–376.
32.
KreugerR.A.Focus Groups: a practical guide for applied research.Newbury Park, California: Sage, 1993.
33.
SandelowskiM.Qualitative Analysis: what it is and how to begin. Res Nurs Health1995; 18(4): 371–375.
34.
RichardsL.Using NVivo in Qualitative Research.Victoria, Australia: Qualitative Solutions and Research, 1999.
35.
LatherP.Getting Smart: feminist research and pedagogy with/in the postmodern.New York: Routledge, 1991.
36.
FierlbeckK.Canadian health care reform and the politics of decentralization. In: AltenstetterC., BjorkmanJ.W. (eds). Health Policy Reform, National Variations and Globalization.London: Macmillan Press, 1997; pp. 17–38.
LevE.L.Dealing with loss: concerns of patients and families in a hospice setting. Clin Nurse Spec1991; 5(2): 87–93.
39.
StetzK.M., HansonW.K.Alterations in perceptions of caregiving demands in advanced cancer during and after the experience. Hosp J1992; 8(3): 21–34.
40.
Nolen-HoeksemaS., LarsonJ., BishopM.Predictors of family members’ satisfaction with hospice. Hospice J2000; 15(2): 29–48.
41.
RogersA., KarlsenS., Addington-HallJ.‘All the services were excellent. It is when the human element comes in that things go wrong’: dissatisfaction with hospital care in the last year of life. J Adv Nurs2000; 31(4): 768–774.
42.
SealeC., KellyM.A comparison of hospice and hospital care for people who die: views of the surviving spousePalliat Med1997; 11(2): 93–100.
43.
LecouturierJ., JacobyA., BradshawC., LovelT., EcclesM.Lay carers’ satisfaction with community palliative care: results of a postal survey. Palliat Med1999; 13(4): 275–283.
44.
AndershedB., TemestedtB.M.Development of a theoretical framework describing relatives’ involvement in palliative care. J Adv Nurs2001; 34(4): 554–562.
45.
RuddickW.Transforming homes and hospital. In: ArrasJ.D. (ed). Bringing the Hospital Home.Baltimore: Johns Hopkins University Press, 1995; pp. 166–179.
46.
BjornsdottirK.From the state to the family: reconfiguring the responsibility for long-term nursing care at homeNurs Inq2002; 9(1): 3–11.
47.
FainsingerR.L., DemoissacD., ColeJ., Mead-WoodK., LeeE.Home versus hospice inpatient care: discharge characteristics of palliative care patients in an acute care hospital. J Palliat Care2000; 16(1): 29–34.
48.
DudgeonD., KristjansonL.Home versus hospital death: assessment of preferences and clinical challenges. CMAJ1995; 152(3): 337–340.
49.
Ward-GriffinC., McKeeverP.Relationships between nurses and family caregivers: partners in care?Adv Nurs Sci2000; 22(3): 89–103.
50.
AndersonJ., TangS., BlueC.Health systems renewal: ‘writing in’ cultural plurality. Working Papers Series (99–14). Vancouver Centre of Excellence, Research on Immigration and Integration in the Metropolis, Vancouver, BC. Available at: http://www.riim.metropolis.netVirtual%20Library/1999/wp9914.pdf
51.
ArmstrongP., ArmstrongH.Wasting Away: the undermining of Canadian health care.Toronto: Oxford University Press, 1996.
52.
DaviesB., Chekryn-ReimerJ., BrownP., MartensN.Fading Away: the experience of transition in families with terminal illness.Amityville, New York: Baywood, 1995.
53.
HadwigerS.C., HadwigerM.C.Dying at home in two different cultures: hermeneutical exemplars. Home Health Care Manage Pract1999; 11(3): 41–50.
54.
AxelssonB., SjodenP.Quality of life of cancer patients and their spouses in palliative home care. Palliat Med1998; 12(1): 29–39.
55.
ArrasJ.D., Neveloff-DublerN.Ethical and social implications of high-tech home care. In: ArrasJ.D. (ed). Bringing the hospital home.Baltimore: Johns Hopkins University Press, 1995; pp. 1–31.
56.
FerrisF.D., BalfourH.M., BowenK., FarleyJ., HardwickM., LamontagneC.A model to guide hospice palliative care.Ottawa: Canadian Hospice Palliative Care Association, 2002.
