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.

Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis Study

“…Social media reviews are increasingly being used to investigate the patient experience of health conditions such as dry eye and chronic obstructive pulmonary disease [ 13 - 15 ]. Other studies have used social media listening to investigate the emotional impact of caregivers who look after patients with leukemia [ 16 ] and to identify posts discussing potential misuse or nonmedical use of antidepressants [ 17 ]. One study found social media listening generated more concepts relevant to the lived experience of specific conditions in comparison to those generated by concept elicitation interviews and the methodology of group concept mapping [ 18 ].…”

Understanding the Lived Experiences of Patients With Melanoma: Real-World Evidence Generated Through a European Social Media Listening Analysis

“…Around 59% of European citizens use the internet to access health information, with 47%-48% using disease-specific websites (blogs and forums) and 16%-23% on social networks [ 11 ]. Social media is increasingly being used to investigate stakeholder experience in a range of health conditions, including cancer [ 12 - 15 ]. Social media listening (SML) may generate concepts that are more relevant to the lived experience of disease, compared with insights elucidated from interviews and focus groups [ 16 ].…”

Understanding the Lived Experiences of Patients With Melanoma: Real-World Evidence Generated Through a European Social Media Listening Analysis (Preprint)

“…Around 59% of European citizens use the internet to access health information, with 47%-48% using disease-specific websites (blogs and forums) and 16%-23% on social networks [11]. Social media is increasingly being used to investigate stakeholder experience in a range of health conditions, including cancer [12][13][14][15]. Social media listening (SML) may generate concepts that are more relevant to the lived experience of disease, compared with insights elucidated from interviews and focus groups [16].…”