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Brain tumors and COVID-19: the patient and caregiver experience*

ABSTRACT: Abstract Background Since the COVID-19 pandemic began, thousands of medical procedures and appointments have been canceled or delayed. The long-term effects of these drastic measures on brain tumor patients and caregivers are unknown. The purpose of this study is to better understand how COVID-19 has affected this vulnerable population on a global scale. Methods An online 79-question survey was developed by the International Brain Tumour Alliance, in conjunction with the SNO COVID-19 Task Force. The survey was sent to more than 120 brain tumor charities and not-for-profits worldwide and disseminated to pediatric and adult brain tumor patients and caregivers. Responses were collected from April to May 2020 and subdivided by patient versus caregiver and by geographical region. Results In total, 1989 participants completed the survey from 33 countries, including 1459 patients and 530 caregivers. There were no significant differences in COVID-19 testing rates (P = .662) or positive cases for brain tumor patients between regions (P = .1068). Caregivers were significantly more anxious than patients (P ? .0001). Patients from the Americas were most likely to have lost their jobs due to the pandemic, practiced self-isolation, and received telehealth services (P ? .0001). Patients from Europe experienced the most treatment delays (P = .0031). Healthcare providers, brain tumor charities, and not-for-profits were ranked as the most trusted sources of information. Conclusions As a result of COVID-19, brain tumor patients and caregivers have experienced significant stress and anxiety. We must continue to provide accessible high-quality care, information, and support in the age of COVID-19.

SUBMITTER: Voisin M

PROVIDER: S-EPMC7499687 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Project description:BackgroundCOVID-19 has challenged critical care nursing through increased critical care service utilization. This may have a profound impact on intensive care unit (ICU) nurses' ability to maintain patient safety. However, the experiences of ICU nurses in managing patient safety during an infectious disease outbreak remains unexplored.Aims and objectivesTo explore ICU nurses' narratives in managing patient safety in the outbreak ICUs during the COVID-19 pandemic.DesignA narrative inquiry design.MethodsA purposive sample of 18 registered nurses who practiced in the outbreak ICUs during the COVID-19 pandemic were recruited between June and August 2020. Individual semi-structured interviews were conducted, transcribed verbatim, and narratively analysed.ResultsFindings reviewed an overarching anatomy-specific storyline of a 'hand-brain-heart' connection that describes nurses' experience with managing patient safety during the COVID-19 pandemic. Firstly, stories on 'the hands of clinical practice' revealed how critical care nursing is practiced and adapted by ICU nurses during the pandemic. In particular, ICU nurses banded together to safeguard patient safety by practicing critical care nursing with mastery. Secondly, stories on 'the brain of psychosocial wellness' highlights the tumultuous impact of COVID-19 on the nurses' psychosocial well-being and how nurses demonstrated resilience to continually uphold patient safety during the pandemic. Lastly, stories on 'the heart of nursing' drew upon the nurses' intrinsic professional nursing identity and values to safeguard patient safety. Specific patient tales further boosted the nurses' commitment to render safe nursing care during the pandemic.ConclusionsThrough their stories, ICU nurses reported how they continually seek to uphold patient safety through clinical competence, resilience, and heightened nursing identity.Relevance to clinical practiceICU nurses require sustainable clinical resources and references such as clinical instructors, as well as visible psychosocial support channels, for ICU nurses to continue to uphold patient safety during COVID-19.

Project description:BackgroundInformal caregivers played a significant role in caring for COVID-19 patients during hospitalization in Nepal. This study aimed to understand the experiences of family caregivers attending to their relatives in a COVID-19 hospital in Nepal.MethodsA descriptive phenomenological approach was adopted to understand the caregiver's experience in supporting their relatives admitted to the COVID-19 hospital of the BP Koirala Institute of Health Sciences (BPKIHS). Thirteen caregivers of COVID-19 positive patients were purposively selected from April to June, 2022. Face-to-face interviews were conducted at a caregiver residential facility using the interview schedule developed by the department for the purpose of data collection after obtaining ethical clearance from the Institutional review committee of BPKIHS. Data were audio recorded and manually analyzed.ResultsAmong the 13 caregivers, six were male and seven were female. The findings were categorized into five domains: challenges encountered, changes in physical and mental health, changes in roles and responsibilities, positive experiences, and strategies to ease caregiving tasks. Major challenges included financial burdens, communication problems, stigmatization, Insecurity, substandard accommodation, and visitor restrictions. Caregivers reported negative emotions, unmet physical health needs, and shifts in family and occupational roles. Despite these challenges, caregivers attempted to cope positively and acknowledged the efforts of healthcare personnel and other family members. Suggestions for improving caregiving included providing essential medical and basic services within the hospital, enhancing accommodation facilities, establishing proper communication channels, and allowing visitations.ConclusionsCaregivers of COVID-19 patients face significant challenges during the caregiving process. Enhancing hospital services, promoting effective communication, fostering positive attitudes, and ensuring a safe environment can facilitate caregiving tasks.

Project description:BackgroundTransitioning nonemergency, ambulatory medical care to virtual visits in light of the COVID-19 global pandemic has been a massive shift in philosophy and practice that naturally came with a steep learning curve for patients, physicians, and clinic administrators.ObjectiveWe undertook a multimethod study to understand the key factors associated with successful and less successful experiences of virtual specialist care, particularly as they relate to the patient experience of care.MethodsThis study was designed as a multimethod patient experience study using survey methods, descriptive qualitative interview methodology, and administrative virtual care data collected by the hospital decision support team. Six specialty departments participated in the study (endoscopy, orthopedics, neurology, hematology, rheumatology, and gastroenterology). All patients who could speak and read English and attended a virtual specialist appointment in a participating clinic at St. Michael's Hospital (Toronto, Ontario, Canada) between October 1, 2020, and January 30, 2021, were eligible to participate.ResultsDuring the study period, 51,702 virtual specialist visits were conducted in the departments that participated in the study. Of those, 96% were conducted by telephone and 4% by video. In both the survey and interview data, there was an overall consensus that virtual care is a satisfying alternative to in-person care, with benefits such as reduced travel, cost, time, and SARS-CoV-2 exposure, and increased convenience. Our analysis further revealed that the specific reason for the visit and the nature and status of the medical condition are important considerations in terms of guidance on where virtual care is most effective. Technology issues were not reported as a major challenge in our data, given that the majority of "virtual" visits reported by our participants were conducted by telephone, which is an important distinction. Despite the positive value of virtual care discussed by the majority of interview participants, 50% of the survey respondents still indicated they would prefer to see their physician in person.ConclusionsPatient experience data collected in this study indicate a high level of satisfaction with virtual specialty care, but also signal that there are nuances to be considered to ensure it is an appropriate and sustainable part of the standard of care.

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Brain tumors and COVID-19: the patient and caregiver experience*

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