A qualitative netnographic study of epilepsy conversations posted on public social media sites over a 12month period was conducted in order to identify key themes and issues for people living with epilepsy (PWE). A total of 264,706 conversations posted online between 03 November 2018 and 03 November 2019, which had originated in the UK, Spain, France, Italy, and Germany, were identified using pre-defined and piloted search terms. A random sample of these posts was then analyzed using natural language processing, and qualitative in-depth and contextual analysis. Key themes that emerged related to: disease awareness among the general public; the psychological and physical impact of seizures; the importance of ensuring proper sleep; understanding disease burden through time; finding treatment and managing side effects; and dealing with depression and anxiety. People living with epilepsy highlighted that seizures have a significant impact on mental as well as physical health and can cause limitations to all aspects of life. Fear of having a seizure in public is a major concern for PWE and the anticipation of seizures can worsen anxiety, causing patients to limit social interaction and often leading to social isolation, which may further exacerbate anxiety and depression. People living with epilepsy therefore advocate that greater attention be paid to the mental health impact of epilepsy. Treatment and its side effects were also a major aspect of the online conversation of PWE. Some PWE believe there is a lack of awareness or sensitivity among healthcare professionals, who may underestimate their concerns or not take sufficient time to discuss their needs. These findings therefore help sign-post issues of importance to PWE and areas in which their care may be improved.
Online discussions have increased during the COVID-19 pandemic as countries around the world established restrictive measures to limit the spread of the virus. Patients and carers have taken to social media to express concerns about challenges to access and disruption of diagnostic and treatment services and seek support and guidance on their prognosis. The goal of this report was to understand the online discourse around COVID-19 for key patient and caregiver audiences, specifically in relation to patients with cancer. Public social media conversations across the US and UK (English only) in relation to COVID-19 and cancer were evaluated to gather this information. Conversations were monitored for 1 week (April 30 to May 6, 2020) and filtered to focus on delays to cancer services. Initial analyses took place across all media channels followed by deep-dive analyses on Twitter and public forums. The online conversation around cancer in relation to COVID-19 is large and multifaceted. Although delays and cancellations to diagnostic services and treatment have undergone intense scrutiny in the media, social media have also seen significant conversation around the real-world implications for cancer patients and their families. The number of COVID-19-related cancer mentions in social media over 1 week was 111.5K. Of these cancer conversations, just over one-third (38K) were related to delays to cancer services. Discussions around delays to cancer services were seen across 10 of the most common cancers. Delays to cancer services are primarily being discussed on Twitter (31.1%) both by those directly affected and those interested in the implications for the health care system. A considerable amount of media reporting also drove the conversation, with online news (24.8%) and blogs (typically news media; 21.9%) highlighting the ongoing concerns about the effect of COVID-19 on future of cancer services and patient prognosis. Forums, typically comprising patients, carers, and others seeking advice and sharing concerns and frustrations around cancer service delays, made up a smaller share of voice (5.5%). There was a pronounced trend towards negative sentiment among conversations in public Facebook pages (49.7%), Twitter (46.3%), and forums (38.4%) regarding cancer service delays. Acute fear, anger, and helplessness were key drivers of negative sentiment in Twitter. Based on analyses of forum-specific conversations, the top COVID-19-related concerns associated with delays in cancer services are delays in cancer diagnostics, access to care (i.e., cancer surgery), and treatment decisions (especially undergoing treatment alone due to social distancing). COVID-19 has led to patients feeling increasing uncertainty about the future. Disruptions to cancer services and lack of clarity as to when these will resume cause patients to feel “abandoned” by their health care providers, frustrated that COVID-19 has overshadowed their battles with cancer, and scared of facing the treatment journey alone. Citation Format: Damian Eade, Laura Galimam, Mónica Fernández-Sierra, Caryn Gordon, Jason McDonough. Public social media discussion of COVID-19 in relation to cancer services disruption [abstract]. In: Proceedings of the AACR Virtual Meeting: COVID-19 and Cancer; 2020 Jul 20-22. Philadelphia (PA): AACR; Clin Cancer Res 2020;26(18_Suppl):Abstract nr PO-035.
About 15% of all cancer diagnoses in western Europe are for prostate cancer, and many cancer patients, caregivers, and healthcare professionals communicate over social media to discuss disease, treatments, side effects, concerns, and support. Social media listening can help identify unmet needs and fill gaps in patient treatment pathways. The authors wanted to understand the topics discussed, emotional tonality and sentiment of conversations, and specific behaviours exhibited. For this study, relevant mentions of prostate cancer were harvested using approved search syntax with social media listening technology. A representative sample across market datasets was used to uncover in-depth insights regarding emotions, key topics, perception, and behaviours, followed by an analysis of the qualitative aspects of the conversation to highlight emotions and behaviours related to the authors’ research objectives. About a quarter of the conversations were related to metastatic cancer, and non-metastatic cancer. Peaks coincided with social movements, such as ‘Movember’ and World Cancer Day. Most conversations about prostate cancer, whether metastatic or not, were driven by anxiety, fear, and worry. Throughout the patient journey, there was an underlying dread of disease progression, with peaks and troughs in emotion coinciding with diagnosis, metastases, treatment, and treatment failure. Patients often felt that they were left by their physicians to make their own decisions regarding treatment and used social media to communicate with their peers and caregivers to gain information. Via social media, patients shared information about disease status, treatment options, side effects, and quality of life, while offering each other emotional support.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.