| 1. |
- Abraha, Aynalem, et al.
(författare)
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Breaking bad news in cancer care: preferences of patients, family caregivers and general public in Ethiopia
- 2021
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Ingår i: International Conference on Communication in Healthcare (ICCH) 2020 Part 2, 15-16 April, 2021.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- This study explores the preferences of cancer patients, family caregivers, and the general public regarding breaking bad news in an Ethiopian oncology setting. The research was conducted at Tikur Anbessa (Black Lion) Specialized Hospital. The sample consists of patients with a confirmed cancer diagnosis, their family caregivers, and representatives from the general public with 150 subjects per cohort. A comparative cross-sectional study design and a multivariable analysis were used. The patients would like to be informed, which contradicts the perceptions of family caregivers. This creates an ethical dilemma for staff in terms of how much they involve their patients in clinical decision-making. The patients also indicate that information not to be withheld from them. In contrast, the general public prefers information about poor life expectancy to be communicated to family only, which may reflect widespread public perception of cancer as a deadly disease. The findings indicate the complexity of communication concerning breaking bad news in oncology care in Ethiopia. It requires oncologists to probe patient attitudes before information disclosure in order to find a balance between involving patients in communication at the same time as keeping a constructive alliance with family caregivers.
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| 2. |
- Abraha, Aynalem, et al.
(författare)
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Perceptions of cancer patients and their caregivers regarding COVID-19 pandemic in Ethiopia
- 2021
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Ingår i: J Clin Oncol 39, 2021 (suppl 15; abstr e24116).
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 3. |
- Abraha Woldemariam, Aynalem, et al.
(författare)
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Breaking Bad News in Cancer Care: Ethiopian Patients Want More Information Than What Family and the Public Want Them to Have.
- 2021
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Ingår i: JCO global oncology. - 2687-8941. ; 7, s. 1341-1348
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Tidskriftsartikel (refereegranskat)abstract
- This study explores the preferences of patients with cancer, family caregivers, and the general public regarding breaking bad news in an Ethiopian oncology setting.The study was conducted at Tikur Anbessa (Black Lion) Specialized Hospital. The sample consists of patients with a confirmed cancer diagnosis, their family caregivers, and representatives from the general public with 150 subjects per cohort. The study used a comparative cross-sectional design and multivariable data analysis.The patients would like to be informed, which contradicts the preferences of family caregivers. This creates an ethical dilemma for staff in terms of how much they involve their patients in clinical decision making. The patients also indicate that information should not be withheld from them. By contrast, the general public prefers information about poor life expectancy to be communicated to family only, which may reflect a widespread public perception of cancer as a deadly disease.The findings indicate the complexity of communication-related preferences concerning breaking bad news in oncology care in Ethiopia. It requires oncologists to probe patient attitudes before information disclosure to find a balance between involving patients in communication at the same time as keeping a constructive alliance with family caregivers.
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| 4. |
- Berbyuk Lindström, Nataliya, 1978, et al.
(författare)
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Person- and Family-Centeredness in Ethiopian Cancer Care: Improving Communication, Ethics, Decision Making and Health
- 2020
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Ingår i: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 9:5
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Cancer is a major burden in Ethiopia. The Oncology Department of Tikur Anbessa (Black Lion) Specialized Hospital (TASH) in Addis Ababa is the country's sole specialist unit for cancer care. With only a handful of oncologists, a lack of resources, and a huge patient load, the work is challenging, especially in terms of achieving effective and ethical patient consultations. Patients, usually accompanied by family members, often wait for a long time to receive medical attention and frequently depart without treatment. Handling consultations effectively is essential in order to help patients as much as possible within such limitations. OBJECTIVE: The project addresses three main aims: (1) to enhance and expand the understanding of communicative and associated ethical challenges in Ethiopian cancer care; (2) to enhance and expand the understanding of the implications and use of person- and family-centered solutions to address such communicative challenges in practice, and (3) to plan and evaluate interventions in this area. METHODS: This project develops and consolidates a research collaboration to better understand and mitigate the communicative challenges in Ethiopian cancer care, with a focus on the handling and sharing of decision making, and ethical tensions between patients, staff, and family. Using theoretical models from linguistics, health communication, and health care ethics, multiple sources of data will be analyzed. Data sources currently include semi-structured interviews with the Ethiopian staff, patients, and family caregivers (91), survey data on cancer awareness (150) and attitudes to breaking bad news (450), and video-recordings of medical consultations (45). In addition, we will also develop clinical and methodological solutions to formulate educational interventions. RESULTS: The project was awarded funding by the Swedish Research Council in December 2017 for the period 2018-2021. The research ethics board in Sweden and in Ethiopia approved the conduct of the project in May 2018. The results from the studies will be published in 2020 and 2021. CONCLUSIONS: The project is a first step towards producing unique and seminal knowledge for the specific context of Ethiopia in the area of physician-patient communication research and ethics. It contributes to an understanding of the complexity around the role of family and ethical challenges in relation to patient involvement and decision making in Ethiopia. Improved knowledge in this area can provide a fundamental model for ways to improve cancer care in many other low resource settings in Africa and the Middle East, which share central cultural prerequisites (such as a strong patriarchal family structure, combined with strong and devout religiosity). The project will also serve to develop greater understanding about current challenges in Western health systems associated with greater family and patient participation in decision making. In addition, the project will also contribute to improving the education of Ethiopian health professionals working in cancer care by developing a training program to help them better understand and respond to identified challenges associated with communication.
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| 5. |
- Deribe, Leul, et al.
(författare)
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Stress and coping strategies among parents of children with cancer at Tikur Anbessa Specialized Hospital paediatric oncology unit, Ethiopia: a phenomenological study
- 2023
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Ingår i: BMJ. British Medical Journal. - : BMJ. - 0959-8146. ; 13:e065090, s. 1-13
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Tidskriftsartikel (refereegranskat)abstract
- Objective This study explores sources of stress, conditions that help reduce stress levels and coping strategies among parents of children with cancer receiving chemotherapy at Tikur Anbessa Specialized Hospital (TASH) in Ethiopia. Design A qualitative phenomenological approach was used. Setting Parents of children receiving chemotherapy at the TASH paediatric oncology unit. Participants Fifteen semistructured in-depth interviews were conducted with nine mothers and six fathers of children with cancer from November 2020 to January 2021. Results Sources of stress related to child’s health condition as the severity of the child’s illness, fear of treatment side effects and loss of body parts were identified. Parents mentioned experiencing stress arising from limited access to health facilities, long waiting times, prolonged hospital stays, lack of chemotherapy drugs, and limited or inadequate information about their child’s disease condition and treatment. Other sources of stress were insufficient social support, stigmatisation of cancer and financial problems. Conditions decreasing parents’ stress included positive changes in the child’s health, receiving cancer treatment and access to drugs. Receiving counselling from healthcare providers, getting social support and knowing someone who had a positive treatment outcome also helped reduce stress. Coping strategies used by parents were religious practices including prayer, crying, accepting the child’s condition, denial and communication with health providers. Conclusion The main causes of stress identified by parents of children with cancer in Ethiopia were the severity of their child’s illness, expectations of poor treatment outcomes, unavailability of cancer treatment services and lack of social/financial support. Measures that should be considered to reduce parents’ stress include providing psycho-oncological care for parents and improving the counselling available to parents concerning the nature of the child’s illness, its treatment, diagnostic procedures and treatment side effects. It may also be helpful to establish and strengthen family support groups and parent-to-parent communication, improve the availability of chemotherapy drugs and offer more education on coping strategies.
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| 6. |
- Girma Kebede, Betlehem, et al.
(författare)
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Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia
- 2020
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Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:3
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Tidskriftsartikel (refereegranskat)abstract
- Background: Cancer is a growing concern in Ethiopia. Though communication is essential for the treatment process, few studies have looked at communication in Ethiopian cancer care. Due to the large number of patients and scarcity of resources, it is vital to understand how to manage consultations in order to effectively help as many patients as possible in this challenging work environment. Thus, research is needed to analyze and understand the communicative challenges experienced by physicians, patients, and family caregivers, in order to successfully handle patient care in practice. Objective We explore communication in Ethiopian cancer care and present the main challenges faced by physicians, patients, and family caregivers. Methods This explorative qualitative study was conducted at the Oncology Department of the Tikur Anbessa (Black Lion) Specialized Teaching Hospital (TASH) in Addis Ababa, Ethiopia. A triangulation of data collection methods was used: 91 audio-recorded, semi-structured interviews and 21 video-recordings of authentic interactions during hospital rounds. The aim was to obtain as complete a picture as possible of communication from the perspectives of physicians, patients, and family caregivers. The interviews were analyzed using thematic content analysis and the identified themes were supported by excerpts from the transcribed recordings. Results Eight themes emerged from the data. Workload and time pressure, in combination with restricted space for privacy, limited the possibilities for physicians to deliver detailed information and provide emotional support. Furthermore, patient literacy levels, in combination with no or little cancer awareness, financial problems, reliance on traditional and religious treatments, the stigma of cancer, and a fatalistic attitude, resulted in delays in patients seeking care and participating in positive health behaviors, and, subsequently, often resulted in an unwillingness to openly discuss problems with physicians and adhere to treatment. The study also illustrates the paramount role of family in physician-patient communication in Ethiopia. Though family caregivers provide a valuable interpreting support when patients have limited language skills, they can also prevent patients from sharing information with physicians. Another important finding is that family caregivers were often responsible for making decisions about treatment and avoided telling patients about a poor prognosis, believing that conveying bad news may upset them. All of these themes have important implications for the role of ethically acceptable communication in patient-centered care. Conclusions This study has identified a number of serious challenges for successful and ethically acceptable health communication in Ethiopian cancer care. The study contributes to our understanding of the complexity around the role of family, combined with patients’ dependency on family members for communication, support, and access to care, which creates particular ethical dilemmas for the medical staff. The questions raised by this study concern how to organize consultations to achieve patient-centered health communication, while maintaining a constructive alliance with the family and not jeopardizing the patient’s continued access to care. The integration of communication training for medical students in Ethiopia, with a focus on ethical guidelines for family-centered patient consultation suitable for these circumstances, would be an essential step.
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