Managing daily life among people with advanced cancer living at home: Responding to uncertainties related to shifting abilities,home care,and treatment
Restricted accessResearch articleFirst published online March, 2021
Managing daily life among people with advanced cancer living at home: Responding to uncertainties related to shifting abilities,home care,and treatment
People with advanced cancer are increasingly expected to live at home and manage the consequences of illness and treatment. The purpose of this study was to explore how people with advanced cancer manage the influence of home care and treatment on occupations and habits.
Method
Constructivist grounded theory guided the collection and analysis of data from 22 people with advanced cancer. Data were collected using in-depth interviews and participant diaries.
Findings
Uncertainty about abilities to engage in occupation and home care and treatment delivery disrupted participants’ daily life. Participants employed various strategies to manage uncertainties and to preserve a sense of agency and control.
Conclusions
This study provides insights into how people with advanced cancer manage and respond to the impact of illness, home care, and treatment in their daily life. The findings may aid occupational therapists to develop and deliver interventions that allow their patients to maintain a sense of agency in their daily life.
AldrichRMCutchinMP (2013) Dewey’s concept of embodiment, growth and occupation: Extended bases for a transactional perspective. In: CutchinMPViginiaDA (eds) Transactional Perspectives on Occupation.
Dordrecht: Springer Publishing Company. pp. 13–23.
2.
BoeckxstaensPDe GraafP (2011)
Primary care and care for older persons: Position paper of the European Forum for Primary Care. Quality in Primary Care19(6): 369–389.
3.
BolgerNDavisARafaeliE (2003)
Diary methods: Capturing life as it is lived. Annual Review of Psychology54(1): 579–616.
4.
BrymanA (2016) Social Research Methods, 5th ed.
New York:
Oxford University Press.
5.
CharmazK (1991) Good Days, Bad Days: The Self in Chronic Illness and Time.
New Brunswick, N.J.:
Rutgers University Press.
6.
CharmazK (2002)
The self as habit: The reconstruction of self in chronic illness. OTJR: Occupation, Participation and Health22(1): 31–41.
CharmazKBelgraveLL (2012) Qualitative interviewing and grounded theory analysis. In: GubriumJFHolsteinKAMarvastiAB, et al. (eds) The SAGE Handbook of Qualitative Research, 2nd ed.
SAGE. DOI: 10.4135/9781452218403.n25.
9.
ClarkF (2000)
The concepts of habit and routine: A preliminary theoretical synthesis. Occupational Therapy Journal of Research20(Suppl. 2000): 123–137.
DevikSAEnmarkerIWiikGB, et al. (2013)
Meanings of being old, living on one’s own and suffering from incurable cancer in rural Norway. European Journal of Oncology Nursing: The Official Journal of European Oncology Nursing Society17(6): 781–787.
EllegårdKNordellK (1997) Att byta vanmakt mot egenmakt.
Stockholm: Johansson & Skyttmo Förlag AB.
16.
EllingsenSRoxbergÅKristoffersenK, et al. (2013)
Entering a world with no future: A phenomenological study describing the embodied experience of time when living with severe incurable disease. Scandinavian Journal of Caring Sciences27(1): 165–174.
17.
ElliottMH (1997)
The use of diaries in sociological research on health experience. Sociological Research Online2(2): 38–48.
18.
EtkindSNBristoweKBaileyK, et al. (2017)
How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliative Medicine31(2): 171–180.
19.
FritzHCutchinMP (2016)
Integrating the science of habit: Opportunities for occupational therapy.OTJR: Occupation, Participation and Health36(2): 92–98.
20.
García-RuedaNCarvajal ValcárcelASaracíbar-RazquinM, et al. (2016)
The experience of living with advanced-stage cancer: A thematic synthesis of the literature. European Journal of Cancer Care25(4): 551–569.
21.
HaakMFängeAIwarssonS, et al. (2007)
Home as a signification of independence and autonomy: Experiences among very old Swedish people. Scandinavian Journal of Occupational Therapy14(1): 16–24.
22.
HammillKByeRCookC (2014)
Occupational therapy for people living with a life-limiting illness: A thematic review.The British Journal of Occupational Therapy77(11): 582–589.
23.
KallhedCMårtenssonL (2018)
Strategies to manage activities in everyday life after a pain rehabilitation program. Scandinavian Journal of Occupational Therapy25(2): 145–152.
24.
KuritaKGaronEBStantonAL, et al. (2013)
Uncertainty and psychological adjustment in patients with lung cancer. Psycho-Oncology22(6): 1396–1401.
25.
la CourKJohannessenHJosephssonS (2009)
Activity and meaning making in the everyday lives of people with advanced cancer. Palliative & Supportive Care7(4): 469–479.
26.
MaerskJLJohannessenHla CourK (2017)
Occupation as marker of self: Occupation in relation to self among people with advanced cancer. Scandinavian Journal of Occupational Therapy26(1): 9–18.
27.
MaerskJLCutchinMPla CourK (2018)
Identity and home: Understanding the experience of people with advanced cancer. Health & Place51: 11–18.
28.
MillsKPayneA (2015)
Enabling occupation at the end of life: A literature review. Palliative & Supportive Care13(6): 1755–1769.
MorganDDCurrowDCDenehyL, et al. (2017)
Living actively in the face of impending death: Constantly adjusting to bodily decline at the end-of-life. BMJ Supportive & Palliative Care 27(2): 179–188.
31.
NayarS (2012)
Grounded theory: A research methodology for occupational science. Journal of Occupational Science19(1): 76–82.
32.
PadgettDK (2008) Qualitative Methods in Social Work Research, 2nd ed.
Los Angeles:
SAGE Publications.
33.
PeoplesHBrandtÅWæhrensEE, et al. (2017)
Managing occupations in everyday life for people with advanced cancer living at home. Scandinavian Journal of Occupational Therapy24(1): 57–64.
34.
RudmanDLDennhardtSFokD, et al. (2008)
A vision for occupational science: Reflecting on our disciplinary culture. Journal of Occupational Science15(3): 136–146.
35.
ShahaMCoxCLTalmanK, et al. (2008)
Uncertainty in breast, prostate, and colorectal cancer: Implications for supportive care. Journal of Nursing Scholarship40(1): 60–67.
36.
SleightAGDukerLIS (2016)
Toward a broader role for occupational therapy in supportive oncology care. American Journal of Occupational Therapy70(4): 7004360030p1–p8.
37.
SperensMHambergKHarizGM (2018)
Challenges and strategies among women and men with Parkinson’s disease: Striving toward joie de vivre in daily life. British Journal of Occupational Therapy81(12): 700–708.
38.
SuzukiM (2012)
Quality of life, uncertainty, and perceived involvement in decision making in patients with head and neck cancer. Oncology Nursing Forum39(6): 541–548.
39.
SvidénGAThamKBorellL (2010)
Involvement in everyday life for people with a life threatening illness. Palliative & Supportive Care8(3): 345–352.
ThomsenTGRydahl-HansenSWagnerL (2010)
A review of potential factors relevant to coping in patients with advanced cancer. Journal of Clinical Nursing19(23–24): 3410–3426.
44.
WHO (2014) Global Atlas of Palliative Care at the End of Life.
World Health Organization.
WilsonDMHewittJAThomasRE, et al. (2014)
Why did an out-of-hospital shift of death and dying occur in Canada after 1994?International Journal of Palliative Care2014(5): 1–11.
47.
YerxaEJ (2002)
Habits in context: A synthesis, with implications for research in occupational science.OTJR: Occupation, Participation and Health22(1): 104–110.
48.
ZimmermanDHWiederDL (1977)
The diary: Diary-interview method. Journal of Contemporary Ethnography5(4): 479–498.
