| 1. |
- Girma Kebede, Betlehem, et al.
(författare)
-
Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia
- 2020
-
Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:3
-
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.
|
|
| 2. |
- Berbyuk Lindström, Nataliya, 1978, et al.
(författare)
-
Person- and Family-Centeredness in Ethiopian Cancer Care: Improving Communication, Ethics, Decision Making and Health
- 2020
-
Ingår i: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 9:5
-
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.
|
|
| 3. |
- Hommerberg, Charlotte, 1960-, et al.
(författare)
-
Battle, Journey, Imprisonment and Burden : patterns of metaphor use in blogs about living with advanced cancer
- 2020
-
Ingår i: BMC Palliative Care. - : Springer Nature. - 1472-684X. ; 19, s. 1-10
-
Tidskriftsartikel (refereegranskat)abstract
- Background: The significance of metaphors for the experience of cancer has been the topic of extensive previous research, with “Battle” and “Journey” metaphors standing out as key. Adaptation to the patient’s use of metaphor is generally believed to be an important aspect of person-centered care, especially in palliative care. The aim of this study was to investigate the use of metaphors in blogs written in Swedish by people living with advanced cancer and explore possible patterns associated with individuals, age and gender.Methods: The study is based on a dataset totaling 2 602 479 words produced some time during the period 2007–2016 by 27 individuals diagnosed with advanced cancer. Both qualitative and quantitative procedures were used, and the findings are represented as raw frequencies as well as normalized frequencies per 10 000 words. Our general approach was exploratory and descriptive. The Mann-Whitney U test was used to analyze statistical significance.Results: Our results confirm the strong foothold of “Journey” and “Battle” metaphors. “Imprisonment” and “Burden” metaphors were also used by the majority of the individuals. The propensity to use metaphors when describing the cancer experience was found to differ extensively across the individuals. However, individuals were not found to opt for one conceptualization over the other but tended to draw on several different metaphor domains when conceptualizing their experience. Socio-demographic factors such as age or gender were not found to be strong predictors of metaphor choice in this limited study.Conclusions: Using a range of different metaphors allows individuals with advanced cancer to highlight different aspects of their experience. The presence of metaphors associated with “Journey”, “Battle”, “Imprisonment” and “Burden” across individuals could be explained by the fact that the bloggers are part of a culturally consistent cohort, despite variations in age, sex and cancer form. Awareness of metaphors commonly used by patients can enhance health professionals’ capacity to identify metaphorical patterns and develop a common language grounded in the patients’ own metaphor use, which is an important requisite for person-centered palliative care.
|
|
