The emotional journey among caregivers of patients with leukemia: The caregivers’ perspective using social media listening.

Abstract

e18568 Background: The burden of cancer has largely focused on the patient. However, caregivers also experience considerable burden. The 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 pre-diagnosis, to diagnosis, and to survivorship alongside their loved ones. At the pre-diagnosis 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.