Patient Information Needs and Decision-Making Before a Cardiac Implantable Electronic Device: A Qualitative Study Utilizing Social Media Data.

The decision to receive a cardiac implantable electronic device (CIED) represents a challenging experience for patients. However, the majority of previous research has only considered retrospective accounts of patient experiences. This study aimed to use social media data to characterize the information sought by people anticipating or considering CIED implantation and factors that influence their decision-making experiences. A Python-based script was used to collect posts made to a community intended for discussions concerning CIEDs on the social media platform Reddit. Reflexive content analysis was used to analyze the collected data. From 799 posts collected, 101 made by 86 participants were analyzed. The reported median (range) age of participants was 34 (16-67), and most were anticipating or considering a pacemaker. Three overarching categories classified the data: "Use of social media to meet informational and other needs"; "Factors influencing acceptance of the need for implantation"; and "Specific concerns considered during decision-making." Participants anticipating or considering a CIED predominantly sought experiential information. Among asymptomatic participants, doubts were prevalent, with acceptance being an influential factor in decision-making. Healthcare professionals should recognize the informational and emotional needs of prospective CIED patients and tailor support mechanisms to better facilitate their decision-making.

Views of admitted palliative care patients and their clinicians on corneal donation discussions: a qualitative content analysis of semi-structured interviews.

BACKGROUND: There is a severe shortage of corneas for donation, globally, for transplantation and research purposes. One group of individuals who could potentially be donors are those who die within the inpatient palliative care unit. The aim of the study was to understand clinician and patient perceptions of corneal donations and discussion of donation in palliative care units. METHODS: A qualitative design was utilised with data collected through semi-structured interviews and analysed using qualitative content analysis. A total of 46 interviews were undertaken involving inpatient palliative care unit patients (19) and clinicians (27) in three major inpatient palliative care units in South Australia. RESULTS: Very few patient participants reported being asked about corneal donations during their time in palliative care. Most inpatient palliative care unit clinicians did not raise the topic as they felt other areas of care took precedence. Inpatient palliative care unit patients thought if inpatient palliative care unit clinicians did not raise the topic, then it was not important. There were some differences between patient and clinician views, such as preference about who raises the possibility of donation and when the discussion might occur. CONCLUSIONS: Findings suggest that patients are receptive to discussing corneal donations, but clinicians are not initiating these. This is a missed opportunity for donors and potential recipients. We recommend that clinicians routinely discuss eye donation as part of palliative care.

The psychological, social, and quality of life outcomes of people with a cardiac implantable electronic device: an umbrella review.

AIMS: To synthesize the psychological, social, and quality of life outcomes of people with a cardiac implantable electronic device. METHODS AND RESULTS: An umbrella review of systematic reviews that reported the psychological, social, or quality of life outcomes of adults with a cardiac implantable electronic device was conducted. This umbrella review was pre-registered with PROSPERO (CRD42023437078) and adhered to JBI and PRISMA guidelines. Seven databases (CINAHL, Cochrane Library, Embase, EmCare, PsycINFO, PubMed, and the Web of Science) were searched alongside citation and bibliographic searches. Methodological quality was assessed using the JBI Checklist of Systematic Reviews and Research Syntheses. Due to the heterogeneity of the included reviews, the findings were reported narratively. A total of 14 systematic reviews met the inclusion criteria; 11 considered quality of life outcomes, and 3 considered psychological outcomes. Little difference in quality of life was found between people with an implantable cardioverter-defibrillator and controls; however, a high prevalence of psychological disorders was present. Cardiac resynchronization therapy devices demonstrated improvements in quality of life compared with control groups, alongside possible cognitive benefits. Quality of life did not differ between subcutaneous and transvenous implantable cardioverter-defibrillators. Pacemakers were associated with improved post-implantation quality of life. CONCLUSION: Research on the psychosocial and quality of life outcomes of people with a cardiac implantable electronic device is limited and inconsistent. Given the heterogeneity of the current research, conclusions are uncertain. Nevertheless, some recipients may experience adverse psychosocial complications. Further research employing rigorous methodologies is needed, and healthcare practitioners should provide care that acknowledges the potential for adverse psychosocial experiences. REGISTRATION: PROSPERO: CRD42023437078.

The Information Needs and Experiences of People Living With Cardiac Implantable Electronic Devices: Qualitative Content Analysis of Reddit Posts.

BACKGROUND: Cardiac implantable electronic devices (CIEDs) are used to treat a range of cardiovascular diseases and can lead to substantial clinical improvements. However, studies evaluating patients' experiences of living with these devices are sparse and have focused mainly on implantable cardioverter defibrillators. In addition, there has been limited evaluation of how people living with a CIED use social media to gain insight into their condition. OBJECTIVE: This study aims to analyze posts from web-based communities called subreddits on the website Reddit, intended for people living with a CIED, to characterize the informational needs and experiences of patients. METHODS: Reddit was systematically searched for appropriate subreddits, and we found 1 subreddit that could be included in the analysis. A Python-based web scraping script using the Reddit application programming interface was used to extract posts from this subreddit. Each post was individually screened for relevancy, and a register of participants' demographic information was created. Conventional qualitative content analysis was used to inductively classify the qualitative data collected into codes, subcategories, and overarching categories. RESULTS: Of the 484 posts collected using the script, 186 were excluded, resulting in 298 posts from 196 participants being included in the analysis. The median age of the participants who reported this was 33 (IQR 22.0-39.5; range 17-72) years, and the majority had a permanent pacemaker. The content analysis yielded 5 overarching categories: use of the subreddit by participants, questions and experiences related to the daily challenges of living with a CIED, physical sequelae of CIED implantation, psychological experiences of living with a CIED, and questions and experiences related to health care while living with a CIED. These categories provided insight into the diverse experiences and informational needs of participants living with a CIED. The data predominantly represented the experiences of younger and more physically active participants. CONCLUSIONS: Social media provides a platform through which people living with a CIED can share information and provide support to their peers. Participants generally sought information about the experiences of others living with a CIED. This was often done to help overcome a range of challenges faced by participants, including the need to adapt to living with a CIED, difficulties with navigating health care, psychological difficulties, and various aversive physical sequelae. These challenges may be particularly difficult for younger and physically active people. Health care professionals may leverage peer support and other aid to help people overcome the challenges they face while living with a CIED.