scholarly journals Psychosocial impact of COVID-19 on cancer patients, survivors, and carers in Australia: a real-time assessment of cancer support services

2021 ◽  
Author(s):  
Rhiannon Edge ◽  
Carolyn Mazariego ◽  
Zhicheng Li ◽  
Karen Canfell ◽  
Annie Miller ◽  
...  
Keyword(s):  
Content Analysis ◽  
Real Time ◽  
Cancer Patients ◽  
Online Community ◽  
Information Needs ◽  
Healthcare Providers ◽  
Service Demand ◽  
Cancer Support ◽  
Cancer Council ◽  
Psychosocial Impacts

Abstract Purpose This study aimed to explore the psychosocial impacts of the coronavirus disease (COVID-19) pandemic on cancer patients, survivors, and carers in Australia. Methods Using real-time insights from two Cancer Council NSW services—131120 Information and Support Line and Online Community (CCOC) forums—we assessed service demand trends, distress levels (using the distress thermometer), and content from 131120 calls and online posts between 01 December 2019 and 31 May 2020. Emergent themes were identified through an inductive conventional content analysis with 131120 call notes, followed by a deductive directed content analysis on CCOC posts. Results In total, 688 COVID-19-related 131120 calls (n = 496) and online posts (n = 192) were analysed. Service demand peaked in March 2020 and self-reported distress peaked in May 2020 at an average of 8/10 [Mean = 7.5; SD = 0.9]. Five themes emerged from the qualitative analysis: psychological distress and fear of virus susceptibility, practical issues, cancer service disruptions, information needs, and carer Issues. Conclusions The psychosocial impacts of COVID-19 on people affected by cancer are multifaceted and likely to have long-lasting consequences. Our findings drove the development of six recommendations across three domains of support, information, and access. Cancer patients, survivors, and carers already face stressful challenges dealing with a cancer diagnosis or survivorship. The added complexity of restrictions and uncertainty associated with the pandemic may compound this. It is important that healthcare providers are equipped to provide patient-centred care during and after this crisis. Our recommendations provide points of consideration to ensure care is tailored and patient oriented.

The appraisal of positive life changes following cancer diagnosis: An interview study

2006 ◽  
Vol 4 (1) ◽  
pp. 3-12 ◽  
Author(s):  
KAZUE KOMURA ◽  
JOHN R. HEGARTY
Keyword(s):  
Content Analysis ◽  
Cancer Patients ◽  
Healthy Lifestyle ◽  
Group Discussion ◽  
Future Research ◽  
Life Changes ◽  
Cancer Support ◽  
Cancer Support Group ◽  
Negative Impacts ◽  
Positive Impacts

Objective: This research examines positive life changes that cancer patients may experience following their diagnosis. Although cancer is often believed to have negative impacts on the life of patients, positive impacts have been also discussed empirically. This study focuses on cancer patients' appraisal of positive life changes following their diagnosis and examines how and in which fields they recognize their lives as positively changed based on the study of Petrie et al. (1999).Methods: A total of eight cancer patients in a cancer support group participated in this research. A group discussion and semistructured interviews were conducted. Content analysis was applied.Results: The content analysis produced insights into the seven types of cancer-related life changes: improved empathy, greater knowledge about health, renewed recognition of life, change in personal life priorities, greater appreciation of health and life, improved close relationships, and healthy lifestyle change. Negative life changes were also reported.Significance of the research: This research showed that cancer patients tended to find and appraise their own positive life changes following cancer. The categorization of positive life changes basically supported that of Petrie et al. (1999), but produced an original category: renewed recognition of life. Positive life changes might be seen as a natural process that encourages patients' adjustment to cancer. Understanding positive impacts of cancer could be important in capturing the life-sized features of cancer patients. Future research could expand the view of the impacts of cancer and demonstrate how people recognize them as benefits.

Understanding Ovarian Cancer Patients’ Information Needs About Genetic Testing to Inform Intervention Design (Preprint)

2021 ◽  
Author(s):  
Yan Zhang ◽  
Siqi Yi ◽  
Ciaran B. Trace ◽  
Marian Yvette Williams-Brown
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Online Community ◽  
Information Needs ◽  
Cancer Genetics ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
Medical Test ◽  
Related Information ◽  
To Receive

BACKGROUND All patients with invasive or high-grade ovarian cancer (OC) are recommended to take genetic testing (GT). However, the GT uptake rate among OC patients remains inadequate. The existing genetic counseling (GC) falls short in adequately addressing this challenge. Communication of information concerning cancer genetics and genetic services to patients needs to be improved to address patients’ GT-related literacy gaps and risk concerns. OBJECTIVE The study aims to investigate OC patients’ GT-related information needs to inform the design of interactive technology-based interventions that can enhance patients’ knowledge of GT and cancer genetics. METHODS We interviewed 20 OC patients who had taken GT and gathered GT-related messages from an active OC online community. The interview transcripts and online community messages were analyzed using the qualitative content analysis method. RESULTS Data analyses produced a comprehensive taxonomy of OC patients’ GT-related information needs, which includes five major topic clusters: knowledge of GT as a medical test, GT process, GT’s implications for patients, implications for family members, and medical terminologies. Patients want to receive information that is relevant, understandable, concise, usable, appropriate, hopeful, and accessible when needed. They prefer different channels to receive information, including interactive internet-based technologies, print, and conversations with healthcare providers. CONCLUSIONS OC patients need a range of information to address uncertainties and challenges that they encounter while taking GT. Their preferences for channels to receive information varied widely. A multi-channel information delivery solution that supplements the existing GC is needed to effectively deliver such interventions to meet OC patients’ GT-related information needs.

scholarly journals “To learn what cancer is, press 1”: A Descriptive study of the Implementation of an Interactive Voice Response (IVR) System for Cancer Awareness in Uganda (Preprint)

2020 ◽  
Author(s):  
Johnblack K Kabukye ◽  
Onaedo Ilozumba ◽  
Jacqueline EW Broerse ◽  
Nicolette de Keizer ◽  
Ronald Cornet
Keyword(s):  
Cancer Patients ◽  
Cancer Care ◽  
Information Needs ◽  
Interactive Voice Response ◽  
Healthcare Providers ◽  
Cost Of Care ◽  
Cancer Information ◽  
Free Access ◽  
Cancer Awareness ◽  
Voice Response

BACKGROUND Cancer awareness is crucial for effective and satisfactory cancer care and prevention. However, cancer awareness in Uganda is low, and access to cancer information is limited. OBJECTIVE In this paper we describe an mHealth intervention in the form of an Interactive voice response (IVR) system for addressing the low cancer awareness in Uganda. Specifically, we (i) describe cancer information needs, (ii) describe the development of the cancer awareness messages and the IVR system for disseminating these messages, and (iii) explore user acceptance and usage of the IVR system. METHODS We conducted interviews and focus group discussions with cancer healthcare providers, cancer patients, caregivers and survivors, administrators and lay citizens, to understand the cancer awareness situation in Uganda (perceptions, beliefs, information needs and challenges to accessing cancer information), and opinions about IVR. We then developed an IVR system to address the cancer awareness needs, tested the system with cancer patients, caregivers and survivors during co-creation workshops, and then implemented and evaluated the system through qualitative telephone surveys and quantitative analysis of system usage data (call records). RESULTS The cancer messages cover general topics such as what cancer is, what causes it (risk factors), cancer screening and diagnosis, and cancer treatment. They also provide practical information on what to expect during cancer care (e.g., duration and cost of care), address myths and misconceptions that were identified, and information on COVID-19 which was added following the outbreak. The IVR system is accessible through a multi-channel toll-free telephone line. In addition to the pre-recorded voice messages, the system allows callers to leave a voicemail or to speak directly to a member of the clinical team. In the six months since go-live, 2411 calls had been made to the system, from 794 unique telephone numbers and lasting a total of 6856 minutes. Call volumes peaked following advertisement of the system and following lockdowns due to COVID-19 outbreak. Participants were generally familiar with IVR technology, and caller feedback was largely positive. Cited benefits include convenience, toll-free access, and detailed information. Recommendations for improvement of the system include adding live agents and marketing of the system to target users. CONCLUSIONS IVR technology provides an acceptable and accessible way for provision of cancer information to patients and the general public in Uganda, live agents who are knowledgeable about cancer should be added to the IVR if possible so that individualized questions can be answered in real time.

African-American and caucasian female cancer patients’ cancer and treatment information needs and preferred information sources

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 9073-9073
Author(s):  
R. K. Matsuyama ◽  
C. Grange ◽  
L. J. Lyckholm ◽  
T. J. Smith
Keyword(s):  
African American ◽  
African Americans ◽  
Cancer Patients ◽  
Information Needs ◽  
Information Sources ◽  
Healthcare Providers ◽  
The Internet ◽  
Sources Of Information ◽  
Female Cancer Patients ◽  
Caucasian Female

9073 Background: Patients need information to maximize access to appropriate care, make informed decisions about treatment and communicate with their physicians and other healthcare providers. This study examined information needs related to cancer care and preferred information sources across ethnicities. Methods: A cross-sectional telephone survey was conducted with a random sample of 107 African-American and Caucasian female cancer patients from a university-affiliated cancer clinic. Descriptive analyses characterize patient demographics and information preferences. Multiple logistic regression tested variations in preferences by ethnicity. Results: There were significant differences in what African-American and Caucasian cancer patients considered their primary sources of information about their cancer and treatment. More African-Americans (36%) than Caucasians (9%) said they go to healthcare providers other than their physicians (e.g., nurses, nursing assistants, p=0.002) and use the library (14% vs. 7%) for information about their disease and treatment (p=0.002). Caucasian patients more often said they go to physicians (61% vs. 40%, p<0.01) or the internet (23% vs. 10%, p=0.04) for their information. More African-Americans (84%) than Caucasians (59%) rated information about counseling for emotional support as extremely important (p<0.01) and rated information about issues such as transportation and legal advice as extremely important (75% vs. 55%, p=0.05). There were no differences between ethnicities in desire for information about disease, treatment, side effects, and chances of getting better. Conclusions: All patients desired accurate and comprehensive information about their disease, prognosis and treatment. Significant differences were found between African-Americans and Caucasians in type and means of information. African-American patients were more likely to obtain information from providers other than physicians, and Caucasians were more likely to use the internet. These findings have implications for training professionals and developing programs to provide information to patients about their cancer treatment. No significant financial relationships to disclose.

The Components of Information Literacy Treatment in Women Cancer Patients (Preprint)

2020 ◽  
Author(s):  
Mahboobeh Farzin ◽  
Hassan Behzadi ◽  
Azam Sanatjoo ◽  
Soodabeh Shahidsaleth
Keyword(s):  
Cancer Patients ◽  
Information Literacy ◽  
Information Needs ◽  
Sampling Procedure ◽  
Health Centers ◽  
Medical Tests ◽  
Medical Terms ◽  
Health Authorities ◽  
Source Of Information ◽  
Cluster Random Sampling

BACKGROUND The information literacy treatment, which comprises an important part of the process of disease, is one of the aspects of health literacy and this concept has been explored in fewer studies. OBJECTIVE The purpose of the present study is to investigate the state of the components of information literacy treatment in Women cancer patients. METHODS This is an applied, survey-based study. The population consists of 143 Women cancer patients were selected employing a cluster random sampling procedure. Data were collected through a researcher-made questionnaire. The questionnaire includes 37 questions consisting of six categories—medications, treatment methods, nutrition, medical tests, treatment costs, and sport exercise. RESULTS The findings showed that patients had the most information needs in the five components (except sport exercise). In addition to, the most important source of information for patients was the doctor and, of course, some of the other medical staff. Also, all the identified criteria for cancer patients were important in using the information sources for treatment. The problems such as: specialized content, unfamiliarity with the medical terms, the complexity of the treatment process, are very important to the patients. CONCLUSIONS The health professionals play an important role in shortening the interval between the patients` need for information and receiving information. It is recommended for the health authorities to hold free classes in health centers and prepare simple and comprehensible materials in these courses.

scholarly journals Underground Microseismic Event Monitoring and Localization within Sensor Networks

Sensors ◽  
2021 ◽  
Vol 21 (8) ◽  
pp. 2830
Author(s):  
Sili Wang ◽  
Mark P. Panning ◽  
Steven D. Vance ◽  
Wenzhan Song
Keyword(s):  
Sensor Networks ◽  
Real Time ◽  
Information Needs ◽  
Localization Algorithm ◽  
Distributed Sensors ◽  
Distributed Sensor ◽  
Microseismic Events ◽  
The Stability ◽  
Stability And Accuracy

Locating underground microseismic events is important for monitoring subsurface activity and understanding the planetary subsurface evolution. Due to bandwidth limitations, especially in applications involving planetarily-distributed sensor networks, networks should be designed to perform the localization algorithm in-situ, so that only the source location information needs to be sent out, not the raw data. In this paper, we propose a decentralized Gaussian beam time-reverse imaging (GB-TRI) algorithm that can be incorporated to the distributed sensors to detect and locate underground microseismic events with reduced usage of computational resources and communication bandwidth of the network. After the in-situ distributed computation, the final real-time location result is generated and delivered. We used a real-time simulation platform to test the performance of the system. We also evaluated the stability and accuracy of our proposed GB-TRI localization algorithm using extensive experiments and tests.

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