Hostname: page-component-586b7cd67f-rcrh6 Total loading time: 0 Render date: 2024-11-22T19:53:43.151Z Has data issue: false hasContentIssue false

Contingent hope theory: The developmental exploration of hope and identity reconciliation among young adults with advanced cancers

Published online by Cambridge University Press:  30 July 2020

Jennifer Currin-McCulloch*
Affiliation:
School of Social Work, Colorado State University, Fort Collins, CO
Casey Walsh
Affiliation:
Department of Health Services, University of Washington, Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA
Lauren Gulbas
Affiliation:
Steve Hicks Schools of Social Work, The University of Texas at Austin, Austin, TX
Kelly Trevino
Affiliation:
Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY
Elizabeth Pomeroy
Affiliation:
Steve Hicks Schools of Social Work, The University of Texas at Austin, Austin, TX
Barbara Jones
Affiliation:
Steve Hicks Schools of Social Work, The University of Texas at Austin, Austin, TX
*
Author for correspondence: Jennifer Currin-McCulloch, Colorado State University, School of Social Work, 1586 Campus Delivery, EDUC 22, Fort Collins, CO 80523, USA. E-mail: [email protected]

Abstract

Objective

The diagnosis of an advanced cancer in young adulthood can bring one's life to an abrupt halt, calling attention to the present moment and creating anguish about an uncertain future. There is seldom time or physical stamina to focus on forward-thinking, social roles, relationships, or dreams. As a result, young adults (YAs) with advanced cancer frequently encounter existential distress, despair, and question the purpose of their life. We sought to investigate the meaning and function of hope throughout YAs’ disease trajectory; to discern the psychosocial processes YAs employ to engage hope; and to develop a substantive theory of hope of YAs diagnosed with advanced cancer.

Method

Thirteen YAs (ages 23–38) diagnosed with a stage III or IV cancer were recruited throughout the eastern and southeastern United States. Participants completed one semi-structured interview in-person, by phone, or Skype, that incorporated an original timeline instrument assessing fluctuations in hope and an online socio-demographic survey. Glaser's grounded theory methodology informed constant comparative methods of data collection, analysis, and interpretation.

Results

Findings from this study informed the development of the novel contingent hope theoretical framework, which describes the pattern of psychosocial behaviors YAs with advanced cancer employ to reconcile identities and strive for a life of meaning. The ability to cultivate the necessary agency and pathways to reconcile identities became contingent on the YAs’ participation in each of the psychosocial processes of the contingent hope theoretical framework: navigating uncertainty, feeling broken, disorienting grief, finding bearings, and identity reconciliation.

Significance of Results

Study findings portray the influential role of hope in motivating YAs with advanced cancer through disorienting grief toward an integrated sense of self that marries cherished aspects of multiple identities. The contingent hope theoretical framework details psychosocial behaviors to inform assessments and interventions fostering hope and identity reconciliation.

Type
Original Article
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

American Cancer Society (2018) What are the key statistics for cancers in young adults? Retrieved from: https://www.cancer.org/cancer/cancer-in-young-adults/key-statistics.html.Google Scholar
Arnett, JJ (2000) Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist 55(5), 469480. doi:10.1037/0003-066X.55.5.469.CrossRefGoogle ScholarPubMed
Bally, JMG, Duggleby, W, Holtslander, L, et al. (2014) Keeping hope possible: A grounded theory study of the hope experience of parental caregivers who have children in treatment for cancer. Cancer Nursing 37(5), 363372. doi:10.1097/NCC.0b013e3182a453aa.CrossRefGoogle ScholarPubMed
Barton, KS, Tate, T, Lau, N, et al. (2018) ‘I'm not a spiritual person': How hope might facilitate conversations about spirituality among teens and young adults with cancer. Journal of Pain and Symptom Management 55(6), 15991608. doi:10.1016/j.jpainsymman.2018.02.001.CrossRefGoogle Scholar
Breitbart, W, Rosenfeld, B, Pessin, H, et al. (2000) Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. Journal of the American Medical Association 284(22), 29072911. doi:10.1001/jama.284.22.2907.CrossRefGoogle ScholarPubMed
Bury, M (1982) Chronic illness as biographical disruption. Sociology of Health and Illness 4(2), 167182.CrossRefGoogle ScholarPubMed
Cassell, EJ (1998) The nature of suffering and the goals of medicine. Loss, Grief & Care 8(1-2). 129142.CrossRefGoogle Scholar
Chochinov, H, Wilson, K, Enns, M, et al. (1998) Depression, hopelessness, and suicidal ideation in the terminally ill. Psychosomatics 39(4), 366370. doi:10.1016/S0033-3182(98)71325-8.CrossRefGoogle ScholarPubMed
Dufault, K and Martocchio, B (1985) Hope: Its spheres and dimensions. Nursing Clinics of North America 20(2), 379391. Retrieved from: https://europepmc.org/abstract/med/3846980.Google ScholarPubMed
Duggleby, W (2000) Enduring suffering: A grounded theory analysis of the pain experience of elderly hospice patients with cancer. Oncology Nursing Forum 27(5), 825831. Retrieved from: https://europepmc.org/abstract/med/10868393.Google ScholarPubMed
Duggleby, W and Wright, K (2009) Transforming hope: How elderly palliative patients live with hope. Canadian Journal of Nursing Research 41(1), 204217. Retrieved from: http://cjnr.archive.mcgill.ca/article/viewFile/1944/1938.Google ScholarPubMed
Eliott, JA and Olver, IN (2009) Hope, life, and death: A qualitative analysis of dying cancer patients' talk about hope. Death Studies 33(7), 609638.CrossRefGoogle ScholarPubMed
Erikson, EH (1950) Childhood and Society. New York: Norton.Google Scholar
Farran, CJ, Herth, KA and Popovich, JM (1995) Hope and Hopelessness: Critical Clinical Constructs. Thousand Oaks, CA: Sage Publications.Google Scholar
Figueroa Gray, M, Ludman, EJ, Beatty, T, et al. (2018) Balancing hope and risk among adolescent and young adult cancer patients with late-stage cancer: A qualitative interview study. Journal of Adolescent and Young Adult Oncology 7(6), 673680.CrossRefGoogle Scholar
Frank, A (1995) The wounded storyteller: Body, Illness, and Ethics. Chicago, IL: University of Chicago Press.CrossRefGoogle Scholar
Glaser, BG (1978) Theoretical Sensitivity. Mill Valley, CA: Sociology Press.Google Scholar
Glaser, BG (1998) Doing Grounded Theory: Issues and Discussions. Mill Valley, CA: Sociology Press.Google Scholar
Glaser, BG and Strauss, AL (1967) The Discovering of Grounded Theory. Chicago, IL: Aldine Publishing Company.Google Scholar
Herth, KA and Cutcliffe, JR (2002) The concept of hope in nursing 3: Hope and palliative care nursing. British Journal of Nursing 11(14), 977983. doi:10.12968/bjon.2002.11.14.10470.CrossRefGoogle ScholarPubMed
Holtslander, LF and Duggleby, WD (2009) The hope experience of older bereaved women who cared for a spouse with terminal cancer. Qualitative Health Research 19(3), 388400. doi:10.1177/1049732308329682.CrossRefGoogle ScholarPubMed
Hutchison, ED (2015) Dimensions of Human Behavior: Person and Environment, 5th ed. Los Angeles: SAGE.Google Scholar
IBM (2013) SPSS Statistics for Windows. Version 23.0. Armonk, NY: IBM Corp.Google Scholar
Jones, B, Parker-Raley, J and Barczyk, A (2011) Adolescent cancer survivors: Identity paradox and the need to belong. Qualitative Health Research 21(8), 10331040. doi:10.1177/104973231140029.CrossRefGoogle ScholarPubMed
Knox, MK, Hales, S, Nissim, R, et al. (2017) Lost and stranded: The experience of younger adults with advanced cancer. Supportive Care in Cancer 25(2), 399407. doi:10.1007/s00520-016-3415-8.CrossRefGoogle ScholarPubMed
Lam, WW, Yeo, W, Suen, J, et al. (2016) Goal adjustment influence on psychological well-being following advanced breast cancer diagnosis. Psycho-Oncology 25(1), 5865. doi:10.1002/pon.3871.CrossRefGoogle ScholarPubMed
Lee, V (2008) The existential plight of cancer: Meaning making as a concrete approach to the intangible search for meaning. Supportive Care in Cancer 16, 779785. doi:10.1007/s00520-007-0396-7.CrossRefGoogle ScholarPubMed
Lethborg, C, Aranda, S, Bloch, S, et al. (2006) The role of meaning in advanced cancer: Integrating the constructs of assumptive world, sense of coherence, and meaning-based coping. Journal of Psychosocial Oncology 24(1), 2742. doi:10.1200/J077v24n01_03.CrossRefGoogle ScholarPubMed
Levinson, D (1978) The seasons of a man’s life. New York: Knopf Books.Google Scholar
Levinson, D (1996) The seasons of a woman’s life. New York: Knopf Books.Google Scholar
Linebarger, JS, Ajayi, TA and Jones, BL (2014) Adolescents and young adults with life-threatening illness: Special considerations, transitions in care, and the role of pediatric palliative care. Pediatric Clinics of North America 61(4), 785796. doi:10.1016/j.pcl.2014.05.001.CrossRefGoogle Scholar
Malone, P, Pomeroy, E and Jones, B (2011) Disoriented grief: A lens through which to view the experiences of Katrina evacuees. Journal of Social Work in End-of-Life & Palliative Care 7, 241262. doi:10.1080/15524256.2001.593159.CrossRefGoogle ScholarPubMed
Marshall, S, Grinyer, A and Limmer, M (2018) Dual liminality: A framework for conceptualizing the experience of adolescents and young adults with cancer. Journal of Adolescent and Young Adult Oncology 8(1), 2631. doi:10.1089/jayao.2018.0030.CrossRefGoogle ScholarPubMed
Mystakidou, K, Parpa, E, Tsilika, E, et al. (2008) Preparatory grief, psychological distress and hopelessness in advanced cancer patients. European Journal of Cancer Care 17(2), 145151. doi:10.1111/j.1365.2354.2007.00825.x.CrossRefGoogle ScholarPubMed
Nekolaichuk, CL and Bruera, E (1998) On the nature of hope in palliative care. Journal of Palliative Care 14(1), 3642. Retrieved from: https://search.proquest.com/openview/da6b00e7f83bd2c1579eabc86699ba3d/1?pq-origsite=gscholar&cbl=31334.CrossRefGoogle ScholarPubMed
Ngwenya, N, Kenten, C, Jones, L, et al. (2017) Experiences and preferences for end-of-life care for young adults with cancer and their informal carers: A narrative synthesis. Journal of Adolescent and Young Adult Oncology 6(2), 200212. http://dx.doi.org/10.1089/jayao.2016.0055.CrossRefGoogle ScholarPubMed
Nierop-Van Baalen, C, Grypdonck, M and Hecke, A (2016) Hope dies last: A qualitative study into the meaning of hope for people with cancer in the palliative phase. European Journal of Cancer Care 25(4), 570579.CrossRefGoogle ScholarPubMed
Onken, L, Carroll, K, Shoham, V, et al. (2014) Reenvisioning clinical science: Unifying the discipline to improve the public health. Clinical Psychological Science 2, 2234.CrossRefGoogle ScholarPubMed
Penz, K and Duggleby, W (2011) Harmonizing hope: A grounded theory study of the experience of hope of registered nurses who provide palliative care in community settings. Palliative and Supportive Care 9(3), 281294. doi:10.1017/S147895151100023X.CrossRefGoogle ScholarPubMed
Pritchard, S, Cuvelier, G, Harlos, M, et al. (2011) Palliative care in adolescents and young adults with cancer. Cancer 117(S10), 23232328. doi:10.1002/cncr.26044.CrossRefGoogle ScholarPubMed
Rosenberg, A and Wolfe, J (2013) Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults 3, 4148. doi:10.2147/COAYA.S29757.Google Scholar
Roulston, A, Davidson, G, Kernohan, G, et al. (2018) Living with life-limiting illness: Exploring the narratives of patients with advanced lung cancer and identifying how social workers can address their psycho-social needs. British Journal of Social Work 48(7), 21142131. doi:10.1093/bjsw/bcx147.CrossRefGoogle Scholar
Sachs, E, Kolva, E, Pessin, H, et al. (2013) On sinking and swimming: The dialectic of hope, hopelessness, and acceptance in terminal cancer. American Journal of Hospice and Palliative Medicine 30(2), 121127. doi:10.1177/1049909112445371.CrossRefGoogle ScholarPubMed
Snyder, CR (2002) Hope theory: Rainbows in the mind. Psychological Inquiry 13(4), 249275. doi:10.1207/S15327965PLI1304_01.CrossRefGoogle Scholar
Tong, A, Sainsbury, P and Craig, J (2007) Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19(6), 349357. doi:10.1093/intqhc/mzm042.CrossRefGoogle ScholarPubMed
VERBI Software (2018) MAXQDA Analytics Pro. Berlin, Germany: VERBI.Google Scholar
Zebrack, B (2011) Psychological, social, and behavioral issues for young adults with cancer. Cancer 117(10 Suppl), 22892294. doi:10.1002/cncr.26056.CrossRefGoogle ScholarPubMed
Supplementary material: File

Currin-McCulloch et al. supplementary material

Currin-McCulloch et al. supplementary material

Download Currin-McCulloch et al. supplementary material(File)
File 15.9 KB