The Emotional Journey Among Caregivers of Patients with Leukemia: The Caregivers

November 2017 Vol 8, No 11
Susan Gabriel, MS

Background: The burden of cancer has largely focused on the patient. However, caregivers also experience considerable burden.

Objectives: This study’s aim was to use social media posts to better understand the emotional journey of caregivers who provide care for patients with leukemia from their own perspective.

Methods: Publicly available social media posts (in English) mentioning chronic myeloid leukemia (CML), chronic lymphocytic leukemia (CLL), and acute promyelocytic leukemia (APL) from blogs, discussion boards, and Facebook were collected and linguistically analyzed.

Results: A total of 145 social media posts by CML caregivers, 149 posts by CLL caregivers, and 65 posts by APL caregivers were analyzed. Common themes emerged among CML, CLL, and APL caregivers as they journeyed from prediagnosis to diagnosis to survivorship alongside their loved ones. At the prediagnosis phase, caregivers expressed uneasiness or worry about the symptoms their loved ones were experiencing. Additionally, caregivers were often frustrated with doctors because they felt that their loved ones’ symptoms were ignored, which led to a delay in diagnosis. Once the diagnosis was confirmed, caregivers were shocked and scared. Further, caregivers were desperate for information on the disease and what the future would hold. During the survivorship phase of the journey, an amalgam of complex positive and negative emotions emerged among caregivers. Caregivers can become obsessed with finding ways to treat their loved ones, including use of alternative medicine. Caregivers experienced both positive (a more “enriched relationship”) and negative (felt alone or pushed away) relationship changes. Many caregivers were proud of their loved ones’ remission and felt triumphant. Caregivers felt a sense of gratitude toward doctors, friends, family, and social media sites for their support.

Conclusions: Caregivers of CML, CLL, and APL patients experience a gamut of emotions at every stage of the disease. Additionally, the relationship between caregivers and loved ones can be negatively affected. Findings suggest that relationship counseling and social support groups could potentially relieve some caregiver burden.

Related Articles
Assessment of Side Effects (SEs) Impacting Quality of Life (QOL) in Patients (Pts) Undergoing Treatment (tx) for Advanced Breast Cancer (ABC) in Clinical Practice: A Real-World (RW) Multicountry Survey
November 2022 Vol 13, No 11
To examine how SEs impacting QOL in pts with ABC are perceived.
Intracranial Activity of Tepotinib in Patients with MET Exon 14 (METex14) Skipping Non–Small-Cell Lung Cancer (NSCLC) Enrolled in VISION
November 2022 Vol 13, No 11
To provide analysis of the intracranial activity of tepotinib in patients with METex14 skipping NSCLC with BM from the VISION study to aid oncology nurse navigators who manage this population of patients.
MOMENTUM: Phase 3 Randomized Study of Momelotinib (MMB) versus Danazol (DAN) in Symptomatic and Anemic Myelofibrosis (MF) Patients Previously Treated with a JAK Inhibitor
November 2022 Vol 13, No 11
MF is a rare bone marrow cancer characterized by fibrosis, abnormal blood cell production, and dysregulated JAK/STAT signaling.1,2
Last modified: August 10, 2023

Subscribe Today!

To sign up for our print publication or e-newsletter, please enter your contact information below.

I'd like to receive:

  • First Name *
    Last Name *
    Profession or Role
    Primary Specialty or Disease State