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.

Cancer Patients' Information Needs across the Cancer Care Continuum: Evidence from the Cancer Information Service

2005 ◽  
Vol 10 (sup1) ◽  
pp. 15-34 ◽  
Author(s):  
Linda Squiers ◽  
Lila J. Finney Rutten ◽  
Katherine Treiman ◽  
Mary Anne Bright ◽  
Bradford Hesse
Keyword(s):  
Cancer Patients ◽  
Cancer Care ◽  
Information Needs ◽  
Information Service ◽  
Cancer Information ◽  
Cancer Information Service ◽  
Care Continuum ◽  
Cancer Care Continuum

scholarly journals Overcoming Challenges of Holistic Cancer Care in Low-Resource Settings

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 174s-174s
Author(s):  
E.S. Akintude ◽  
I. Lawal ◽  
A. Osinowo ◽  
A. Okeremi
Keyword(s):  
Cancer Patients ◽  
Emotional Support ◽  
Cancer Care ◽  
Healthcare Professionals ◽  
Healthcare Providers ◽  
Cost Of Care ◽  
Disruptive Effect ◽  
Low Resource Settings ◽  
Low Resource ◽  
Program Policy

Background and context: Live does not remain the same after receiving the news of cancer in a family. Most people face some degree of depression, anxiety, fear or distress when cancer becomes part of their lives. The disruptive effect of cancer on family happiness is worsen by high cost of care, this is particularly relevant in low resource settings where health poverty is prevalent and most healthcare expenses are out of pocket. My family never remained the same from the point we received the diagnosis of colon cancer in my late husband. While I derive satisfaction in the knowledge that we fought the disease with everything we had up until the time of his death, I am however certain that the attendant stress would have been significantly lessened had healthcare providers availed us with all the necessary information required for us to cope with the condition. Consequently, Niola Cancer Care Foundation was conceptualized to bridge the identify gaps. Aim: To support healthcare providers in providing holistic care to cancer patients in low resource settings. Strategy/Tactics: Drawing largely from the experience and knowledge acquired during the care and management of my late husband and subsequent requests from careers of cancer patients for guidance, we conceptualized Cancer Assistance Network (CAN) with the aim of providing support to cancer patients and the carer to ease their challenges in accessing care in Nigeria. Program/Policy process: Cancer patients and their carers are recruited into the Cancer Assistance Network either through our routine hospital visits or by client-initiated contact. To facilitate individualization of support to suite individual patient's needs and requirements, the client requesting assistance is required to answer specific questions relating to the disease condition, treatment received so far and area of assistance required from Niola Cancer Care Foundation. Based on agreed criteria, the level of support that can be rendered is discussed. The support is categorized into 3 broad headings; financial, informational and emotional support. Outcomes: Finance is the primary reasons why most patients or their carer seek support from Niola Cancer Care Foundation. Unfortunately, most times we are not able to meet their financial requirements leading to initiation disappointment. We are however able to restore hope and confidence as we provide informational and emotional support. What was learned: Healthcare professionals for whatever reasons seems not to be comfortable discussing holistic cancer care with patients particularly those with advanced state requiring palliative care. Consequently, there is a disconnect between patients and healthcare professional's expectation of outcome. We are working with healthcare professionals to better understand factors responsible for poor communication of expected outcome between them and the patients.

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.

scholarly journals Organizing Psycho-Oncological Care for Cancer Patients: The Patient’s Perspective

2021 ◽  
Vol 12 ◽  
Author(s):  
Anouk S. Schuit ◽  
Karen Holtmaat ◽  
Valesca van Zwieten ◽  
Eline J. Aukema ◽  
Lotte Gransier ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Cancer Care ◽  
Healthcare Providers ◽  
Structured Interviews ◽  
Oncological Treatment ◽  
Face To Face ◽  
Patient’S Perspective ◽  
Oncological Care ◽  
After Cancer ◽  
To Receive

BackgroundCancer patients often suffer from psychological distress during or after cancer treatment, but the use of psycho-oncological care among cancer patients is limited. One of the reasons might be that the way psycho-oncological care is organized, does not fit patients’ preferences. This study aimed to obtain detailed insight into cancer patients’ preferences regarding the organization of psycho-oncological care.Methods18 semi-structured interviews were conducted among cancer patients. Patients completed psycho-oncological treatment between 2015 and 2020 at the psychology department in a general hospital or a center specialized in psychological cancer care in the Netherlands. The interview comprised questions related to preferences regarding the institute where to receive treatment, the psychologist who provides treatment, and the type of treatment, as well as questions related to experienced barriers and facilitators to receive psycho-oncological care. Interviews were digitally recorded and transcribed verbatim. Data were analyzed individually by two coders into key issues and themes.ResultsRegarding the institute, easy accessibility and prompt availability of psychol-oncological care were considered important. Regarding the psychologist, most participants had a strong preference to be treated by a psychologist specialized in cancer or other somatic diseases. Individual face-to-face therapy was preferred above other types of treatment. Several barriers were mentioned to receive psycho-oncological treatment, among which poor accessibility to psycho-oncological care, lack of knowledge on the possibilities for psycho-oncological treatment, and stigma. Most frequently mentioned facilitators were being assertive to ask for help, having a good relationship with the healthcare professional, and the integration of psycho-oncological support within medical cancer care.ConclusionFrom the patient’s perspective, the organization of psycho-oncological care for cancer patients should focus on easy accessibility and availability, delivered by specialized psychologists, and integration in medical cancer care. Online and group therapy are acceptable, but individual face-to-face therapy is preferred. It is warranted to increase awareness on psycho-oncological care targeting both patients and healthcare providers.

Surveys of Cancer Patients and Cancer Care Providers Regarding Complementary Therapy Use, Communication and Information Needs

2014 ◽  
Vol 20 (5) ◽  
pp. A98-A98 ◽  
Author(s):  
Ngaire King ◽  
Lynda Balneaves ◽  
Cynthia Card ◽  
Jill Nation ◽  
Thao Nguyen ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Cancer Care ◽  
Information Needs ◽  
Complementary Therapy ◽  
Care Providers

An innovative approach to manage cancer patient information for care coordination and monitoring using a digital health platform for a nonprofit tertiary cancer care institute in India.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e14102-e14102
Author(s):  
Sharon Hensley Alford ◽  
Rishi Kumar Gupta ◽  
Nayan Sonawane ◽  
Srishti Mahatma ◽  
Shilpa Mahatma ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Cancer Care ◽  
Medical Information ◽  
Early Stage ◽  
Digital Health ◽  
Ease Of Use ◽  
Cancer Information ◽  
New Delhi ◽  
Non Profit ◽  
Treatment Information

e14102 Background: In India, most patients maintain a personal copy of their medical record in paper form which is hard to manage and collate. Newly diagnosed cancer patients and their doctors have an insurmountable task of consuming and using that information. Making this information available in an easy to consume format as well as recording a patient’s cancer experience is a technical challenge. We piloted an innovative mobile application to address this pain point. Methods: A pilot engagement was performed with 100+ cancer patients visiting a non-profit oncology center between March 2019 and January 2020 in a suburb of New Delhi, India. Systematic medical information was captured on stage, TNM, molecular markers, tumor size, tests, and treatments. We assessed the utility of a digital health application for the purpose of cancer information management and ease of use by the medical team. Results: Data for a total of 65 patients with a single cancer and diagnosis and treatment information was captured. Patients were between the ages of 23 and 78, mean age 49. Of these patients, there were 21 (32%) early stage cases ( < Stage 3), 23 (35%) late stage cases ( > Stage 2), and 21 (32%) cases with missing stage. Overall, 39 (60%) received a chemotherapy only regimen, 2 (3%) radiation only, 6 (9%) surgery only, 6 (9%) received chemotherapy and radiation, 11 (17%) received surgery and chemotherapy, and 1 (1%) patient received surgery, chemotherapy, and radiation. Clinic staff reported that the application was easy to use and helpful. We continue to enhance the application with staff feedback. Conclusions: We demonstrate the feasibility and value of moving to a next generation digitized mobile platform circumventing the need for a traditional EMR system at a busy non-profit oncology clinic in the suburbs of New Delhi, India. Using the pilot, we make a case that this type of technology has the ability to transform cancer care for rural and low-resource cancer centers. We also demonstrate that it is easy to capture patient longitudinal data using this innovative platform.

Patterns and costs of hospital-based cancer care in the last year of life: A national data linkage study in England.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18769-e18769
Author(s):  
Xhyljeta Luta ◽  
Katharina Diernberger ◽  
Joanna Bowden ◽  
Joanne Droney ◽  
Peter S Hall ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Cancer Care ◽  
Hospital Admissions ◽  
Health Care Utilisation ◽  
Cost Of Care ◽  
Hospital Episode Statistics ◽  
Hospital Episode ◽  
Care Utilisation

e18769 Background: Delivery of high quality cancer care is associated with rising costs, both in earlier stages of the illness trajectory and at the end of life. A significant portion of the costs and health care utilisation occurs in the last year of life. Most publications to date have focused on costs in hospital. Little is known about the costs of care for cancer patients across the entire health service. The aim was to examine primary, secondary and acute health care utilisation and cost in the last 12 months of life and how these differ by cancer diagnosis and other patient characteristics among decedent patients aged 60 and over. Methods: We conducted a retrospective cohort study of people aged 60 years and over (N=26,077) who died in England between 2010 and 2017. We used routinely collected and linked data from primary care (Clinical Practice Research Datalink (CPRD) secondary and acute care, (Hospital Episode Statistics (HES), and death data (Office for National Statistics (ONS)). This provided a nationally representative sample of the English population. We analysed of healthcare utilisation and resource use amongst decedents by gender, primary cause of death, age, geography, socio-economic status and comorbidities. Results: Overall, 90.2 % of the cancer decedents were admitted in the hospital at least once in the last 12 months of life. About 50% of patients we admitted to hospital in the last month of life with 37.6 being admitted to the hospital more than once in the last month of life. The health care utilisation and costs increased sharply in the last month of life. life. The mean number of hospital admissions in the last year of life was 3.7 (SD, 5.8). Those dying of haematological cancers (N=2093) had highest number of hospital admissions (mean:7.2, SD:10.8) and longer average hospital stay (mean:36.7, SD:33.0) (mean:12.0, SD:14.4). Use of outpatient services was highest in the group dying of haematological cancers (mean:12.0, SD:14.4) whereas those dying of prostate cancer (N= 2197) had higher number of emergency (mean:2.0, SD: 1.9) and GP visits (mean:30.8, SD: 20.7). Healthcare costs were highest among haematological cancers and lowest among those dying of breast cancer. Proximity to death and comorbidities were the main contributors of end-of-life care health care utilisation and costs. Conclusions: This study uses large linked datasets (linked to the whole spectrum of hospital episode statistics) providing a comprehensive picture of healthcare services accessed by cancer patients at end of life in England. There is significant variation in use and cost of care for cancer patients in the last year and month of life. Further analysis of variation according to hospice, palliative, and social care service provision may identify strategies to address this variation.

Perceptions of cancer patients and their caregivers regarding COVID-19 pandemic in Ethiopia.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24116-e24116
Author(s):  
Aynalem Abraha Woldemariam ◽  
Nataliya Berbyuk Lindström ◽  
Rune Andersson ◽  
Adamu Addissie
Keyword(s):  
Cancer Patients ◽  
Cancer Care ◽  
Information Needs ◽  
Addis Ababa ◽  
Cross Sectional Study ◽  
Ethical Review ◽  
Cross Sectional ◽  
Tikur Anbessa Specialized Hospital ◽  
Oncology Care ◽  
The Impact

e24116 Background: Limited research is available about COVID 19 pandemic in Ethiopia in general and in relation to cancer care in particular. Ethiopia reported the first COVID-19 in March, 2020. The number of cases is increasing, putting much pressure on oncology care. This study examines what the Ethiopian cancer patients and their caregivers knew about COVID 19 after the initial stages of the pandemic. It also assesses the information needs, psychological experiences as well as the impact of pandemic on oncologist-patient-caregiver communication and treatment process. Methods: A cross-sectional study was conducted among 200 participants (100 cancer patients and 100 caregivers) at the initial stage of pandemic (May 1 - June 30, 2020) at Tikur Anbessa Specialized Hospital (TASH), Addis Ababa, Ethiopia. Data was collected using a pre-tested, structured questionnaire to assess knowledge and perceptions on COVID-19. Ethics approval was obtained from the Ethical Review Board of TASH (04/14/2015) and the Ethical Review Board of Western Sweden (DNR 520-18). Results: The results indicate that though both cancer patients and their caregivers show a high awareness of and knowledge about COVID 19, they need more information about the risks specific to cancer patients. The respondents are also concerned about the risks of pandemic outbreak in Ethiopia and its impact on availability of cancer care treatments in the country. The respondents report experiencing psychological concerns in relation to the pandemic. The higher educated patients and caregivers report being more concerned than the lower educated respondents. Delays in appointments and therapy are the main concerns in relation to cancer care. Further, both patients and caregivers experience that the restrictions on the number of caregivers present during interactions with oncologists negatively influence communication, resulting in relatives being excluded and patients experiencing loneliness and lack of support. Conclusions: Getting a better insight into knowledge and awareness of COVID-19 among cancer patients and their caregivers is essential for managing the effects of pandemic in cancer care. To our knowledge, there was no similar study in Ethiopia. The results of the study contribute to insights into patient and caregiver awareness of COVID 19, essential for adoption of health care protective practices, providing information and managing oncologist-patient-caregiver communication.

scholarly journals Working With the Commercial Motorists to Promote Cancer Awareness

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 127s-127s
Author(s):  
J. Ekudo ◽  
D. Bwembo ◽  
A. Agwang
Keyword(s):  
Cancer Patients ◽  
Community Involvement ◽  
Blood Donation ◽  
Cancer Education ◽  
Daily Basis ◽  
Cancer Information ◽  
Cancer Awareness ◽  
Ministry Of Health ◽  
Kampala City ◽  
Cancer Education Materials

Background and context: Motorcycle transport system also known as “BodaBoda”' is one of Uganda's commonest means of transport with over 10,000 motorists ridding on the streets of Kampala on daily basis according to the statistics from Kampala City Authority. HealthAid Uganda (HAU) strategically engaged the above group in to promotion of cancer awareness, screening and blood donation for cancer patients following the lack of blood at the cancer institute for cancer patients. The process was strengthened by working in partnership with the Uganda Bodaboda Association 2010, an umbrella association that brings all the motorists together. It also included the Uganda Police Services, Ministry of Health and the private sector. Aim: To use motorists to deliver cancer education, awareness and facilitate blood donation for cancer patients in Uganda. Strategy/Tactics: The event was branded with the theme “Know your health, donate blood, save life”. It involved mobilization of the motorcycle riders through the BodaBoda 2010 association, a cancer awareness motorcycle ride across Kampala City, led by the head of traffic Uganda police as the chief rider. This was conducted along Kampala road and finally convened on the Uganda railway grounds, where the event was crowned with cancer education, screening and blood donation for the cancer patients. Program/Policy process: Community involvement and advocacy. Outcomes: There were large number of motorcycle riders 1000 who passionately turned up for the community event, high expectations to know about cancer and being able to go with cancer education materials for their families and communities. Blood bank collection team declared collecting 400 units of blood. The head, Department of Non Communicable Diseases at the Ministry of Health appreciated the efforts of HAU and pledged that the MOH will strongly work and support HAU on the initiative. The event attracted over 1500 individuals both the motorcycle riders and the community. What was learned: Using popular service groups has a high success rate in delivering cancer awareness and screening services to the least households in the community. HAU's success in this strategy was accelerated by the principle in which it focuses on working with organized groups so as to reach the households with cancer information and empower them to be able to make best choices. HAU looks further to extending the same activities to other communities of similar nature.

scholarly journals An exploration of healthcare providers’ experiences and perspectives of Traditional and complementary medicine usage and disclosure by Indigenous cancer patients

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
A. Gall ◽  
K. Anderson ◽  
J. Adams ◽  
V. Matthews ◽  
G. Garvey
Keyword(s):  
Cancer Patients ◽  
Cancer Care ◽  
Conventional Medicine ◽  
Healthcare Providers ◽  
Well Being ◽  
Indigenous Australians ◽  
Care Providers ◽  
Cancer Treatments ◽  
Negative Interactions ◽  
Lack Of Knowledge

Abstract Background Traditional and complementary medicines (T&CM) are any form of medicine, practice, treatment, product, technology, knowledge system or ceremony outside of conventional medical practice that aims to prevent and/or treat illness and/or promote well-being. Alongside conventional cancer treatments, T&CM usage is increasing; with 19% of indigenous Australians with cancer reporting using T&CM. There is limited evidence surrounding T&CM use and disclosure by indigenous patients. Our aim was to explore healthcare providers’ views about usage, disclosure/non-disclosure of T&CM by Indigenous cancer patients. Methods Semi-structured, in-depth interviews with 18 healthcare providers, including three indigenous providers, at a large urban hospital providing care to Indigenous cancer patients were conducted to explore providers’ experiences and attitudes towards T&CM use by Indigenous cancer patients. An interpretive phenomenological approach was used to thematically analyse the data. Results Analysis revealed six themes: concern about risk; no ‘real’ benefits; perception of T&CM and conventional medicine as antithetical; barriers to disclosure; ‘patients’ choice’ a double-edged sword; and providers’ lack of knowledge about T&CM. Healthcare providers perceived discord between T&CM and conventional medicine. Most lacked knowledge of T&CM, and had concerns around negative-interactions with conventional treatments. They considered T&CM outside their role, citing this as reasoning for their lack of knowledge. Indigenous healthcare providers had greater understanding and openness towards T&CM. Conclusions Given the potential usage of T&CM by Indigenous cancer patients, providers need a more comprehensive understanding of T&CM in order to inform discussion and facilitate effective disclosure on this topic. If indigenous Australians with cancer feel that cancer care providers are unreceptive to discussing T&CM, patient care risks being compromised; particularly given the potential for negative interactions between T&CM and conventional cancer treatments. Fostering health care interactions where indigenous patients feel comfortable to discuss T&CM usage should be a priority for all cancer care services.

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