Hostname: page-component-cd9895bd7-jn8rn Total loading time: 0 Render date: 2024-12-26T06:26:48.629Z Has data issue: false hasContentIssue false
  • English
  • Français

A lifespan approach to understanding family caregiver experiences of a blood cancer diagnosis

Published online by Cambridge University Press:  23 April 2021

Amanda L. Kastrinos Open the ORCID record for Amanda L. Kastrinos [Opens in a new window] ,
Carla L. Fisher ,
Michaela D. Mullis ,
Easton Wollney ,
Maria Sae-Hau ,
Elisa S. Weiss  and
Carma L. Bylund Open the ORCID record for Carma L. Bylund [Opens in a new window]
Amanda L. Kastrinos*
Affiliation:
College of Journalism and Communications, University of Florida, Gainesville, FL
Carla L. Fisher
Affiliation:
College of Journalism & Communications, UF Health Cancer Center, UF Health Center for Arts in Medicine, University of Florida, Gainesville, FL
Michaela D. Mullis
Affiliation:
College of Journalism and Communications, University of Florida, Gainesville, FL
Easton Wollney
Affiliation:
College of Journalism and Communications, University of Florida, Gainesville, FL
Maria Sae-Hau
Affiliation:
The Leukemia & Lymphoma Society, Rye Brook, NY
Elisa S. Weiss
Affiliation:
The Leukemia & Lymphoma Society, Rye Brook, NY
Carma L. Bylund
Affiliation:
College of Journalism & Communications, College of Medicine, University of Florida, Gainesville, FL
*
Author for correspondence: Amanda L. Kastrinos, College of Journalism and Communications, University of Florida, 2096 Weimer Hall, 1885 Stadium Road, PO Box 118400, Gainesville, FL 3261, USA. E-mail: akastrinos@ufl.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives

The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers.

Methods

Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data.

Results

Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members.

Significance of results

Differences between the caregivers’ experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.

Keywords

CancerDiagnosisFamily caregiversHematological malignancyLifespanOncology
Type
Original Article
Information
Palliative & Supportive Care , Volume 20 , Issue 1 , February 2022 , pp. 22 - 29
Check for updates
Copyright
Copyright © The Author(s), 2021. 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

Anngela-Cole, L and Hilton, JM (2009) The role of attitudes and culture in family caregiving for older adults. Home Health Care Services Quarterly 28(2–3), 59–83. doi:10.1080/01621420903014790.CrossRefGoogle ScholarPubMed
Chen, J and Mullen, CA (2017) Patterns of diagnosis and misdiagnosis in pediatric cancer and relationship to survival. Journal of Pediatric Hematology/Oncology 39(3), e110–e115. doi:10.1097/MPH.0000000000000688.CrossRefGoogle ScholarPubMed
Dilworth-Anderson, P, Brummett, BH, Goodwin, P, et al. (2005) Effect of race on cultural justifications for caregiving. The Journals of Gerontology: Series B 60(5), S257–S262. doi:10.1093/geronb/60.5.S257.CrossRefGoogle ScholarPubMed
Fingerman, K, Nussbaum, J and Birditt, K (2003) Keeping all five balls in the air: Juggling family communication at midlife. In Vangelisti, AL (ed.), The Routledge Handbook of Family Communication. Routledge, pp. 159–176. Available at: https://www.taylorfrancis.com/books/e/9781410609564/chapters/10.4324/9781410609564-13.Google Scholar
Fletcher, C, Flight, I, Chapman, J, et al. (2017) The information needs of adult cancer survivors across the cancer continuum: A scoping review. Patient Education and Counseling 100(3), 383–410. doi:10.1016/j.pec.2016.10.008.CrossRefGoogle ScholarPubMed
Germino, BB and Funk, SG (1993) Impact of a parent's cancer on adult children: Role and relationship issues. Seminars in Oncology Nursing 9(2), 101–106. doi:10.1016/S0749-2081(05)80105-6.CrossRefGoogle ScholarPubMed
Glaser, B and Strauss, A (1967) Grounded theory: The discovery of grounded theory. Sociology: the Journal of the British Sociological Association 12(1), 27–49.Google Scholar
Kent, EE, Rowland, JH, Northouse, L, et al. (2016) Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving: Informal cancer caregiving. Cancer 122(13), 1987–1995. doi:10.1002/cncr.29939.CrossRefGoogle ScholarPubMed
Kim, Y and Given, BA (2008) Quality of life of family caregivers of cancer survivors. Cancer 112(S11), 2556–2568. doi:10.1002/cncr.23449.CrossRefGoogle ScholarPubMed
Levit, LA, Balogh, E, Nass, SJ, et al. (2013) Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: National Academies Press.CrossRefGoogle Scholar
Litzelman, K (2019) The unique experience of caregivers based on their life stage and relationship to the patient. In Applebaum, A (ed.), Cancer Caregivers. pp. 34–49. doi:10.1093/med/9780190868567.003.0003.Google ScholarPubMed
McLean, S, Gomes, B and Higginson, IJ (2017) The intensity of caregiving is a more important predictor of adverse bereavement outcomes for adult–child than spousal caregivers of patients who die of cancer. Psycho-Oncology 26(3), 316–322. doi:10.1002/pon.4132.CrossRefGoogle ScholarPubMed
Owen, WF (1984) Interpretive themes in relational communication. Quarterly Journal of Speech 70(3), 274–287. doi:10.1080/00335638409383697.CrossRefGoogle Scholar
Phillips, BS (1957) A role theory approach to adjustment in old age. American Sociological Review 22(2), 212–217. doi:10.2307/2088860.CrossRefGoogle Scholar
Strauss, A and Corbin, J (1998) Basics of Qualitative Research Techniques. Thousand Oaks, CA: Sage.Google Scholar
Zarit, SH, Polenick, CA, DePasquale, N, et al. (2019) Family support and caregiving in middle and late life. In Fiese BH (eds.), APA Handbook of Contemporary Family Psychology: Applications and Broad Impact of Family Psychology. Vol. 2. Washington, DC: American Psychological Association, pp. 103–119.CrossRefGoogle Scholar