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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*
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

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.

Type
Original Article
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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