| 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 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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| 3. |
- Behdadi, Dorna, 1988, et al.
(författare)
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A Normative Approach to Artificial Moral Agency
- 2020
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Ingår i: Minds and Machines. - : Springer Science and Business Media LLC. - 0924-6495 .- 1572-8641. ; 30:2, s. 195-218
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Tidskriftsartikel (refereegranskat)abstract
- This paper proposes a methodological redirection of the philosophical debate on artificial moral agency (AMA) in view of increasingly pressing practical needs due to technological development. This “normative approach” suggests abandoning theoretical discussions about what conditions may hold for moral agency and to what extent these may be met by artificial entities such as AI systems and robots. Instead, the debate should focus on how and to what extent such entities should be included in human practices normally assuming moral agency and responsibility of participants. The proposal is backed up by an analysis of the AMA debate, which is found to be overly caught in the opposition between so-called standard and functionalist conceptions of moral agency, conceptually confused and practically inert. Additionally, we outline some main themes of research in need of attention in light of the suggested normative approach to AMA.
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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. |
- Bergström, Martin, et al.
(författare)
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Interventions in Foster Family Care: A Systematic Review
- 2020
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Ingår i: Research on social work practice. - : SAGE Publications. - 1049-7315 .- 1552-7581. ; 30:1, s. 3-18
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Foster family care is associated with adverse short- and long-term consequences for the child. A systematic review was conducted on interventions for foster children and foster careers. Method: A comprehensive search process was used to find eligible interventions evaluated in randomized controlled trials or quasi-experimental studies. The quality of studies was assessed with GRADE, and effects were synthesized using meta-analytic methods. Results: In all, 28 publications of 18 interventions, including 5,357 children, were identified. Only three specific interventions had sufficient confidence of evidence. No study had examined tools for foster parent selection nor had evaluated preservice programs related to outcomes. Discussion: These analyses provide new insights and hope into the field of systematic interventions in foster care. The overall results indicate that it is possible to improve eight outcomes but cannot point out which programs are superior. Ethically, social care organizations should systematically collect knowledge about effects and side effects.
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| 6. |
- El-Alti, Leila, 1986, et al.
(författare)
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Caregiver perspectives on patient capacities and institutional pathways to person centered forensic psychiatric care
- 2022
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Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 17:9
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Tidskriftsartikel (refereegranskat)abstract
- The ethical discourse surrounding patients’ agential capacities, vis-à-vis their active participation in shared decision-making (SDM) in forensic psychiatric (FP) contexts, is an unexplored area of inquiry. The aim of this paper is to explore caregivers’ perceptions of patient agential capacities and institutional pathways and barriers to person centered care (PCC) in the context of FP. Following an exploratory qualitative design, we conducted eight semi-structured interviews with hands-on caregivers at an in-patient FP facility in Sweden. A deductive framework method of analysis was employed, and four themes emerged: “Fundamental Variability in Patient Capacity”, “Patient Participation: Narration or Compliance?”, “Antagonism Rooted in Power Struggles”, and “System Structure Thwarts Patient Release”. While the results generally paint a bleak picture for the possibility of a person-centered FP care, we describe a constrained version of PCC with high-level SDM dynamics which promotes a certain degree of patient empowerment while allowing care strategies, within set restrictions, to promote patient adherence and treatment progress.
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| 7. |
- 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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| 8. |
- Hartvigsson, Thomas, 1985, et al.
(författare)
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Etiska aspekter
- 2023
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Ingår i: Psykosociala insatser för att förebygga och minska gängkriminalitet bland barn och unga vuxna. SBU Utvärderar 369.. - Stockholm : Statens beredning för medicinsk och social utvärdering (SBU). - 9789198755466 ; , s. 60-66
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Bokkapitel (refereegranskat)abstract
- Huvudbudskap Forskning visar att det finns insatser som involverar socialtjänst eller motsvarande som kan minska skjutvapenvåld, medlemskap i gäng och fortsatt kriminalitet bland unga personer. Slutsatser Efter att ha gått igenom den samlade vetenskapliga litteraturen har SBU dragit följande slutsatser: Färdighetsträning i skolan för elever på mellanstadiet (t.ex. konfliktlösning) kan förebygga medlemskap i gäng och bärande av vapen. Insatser av typen fokuserad avskräckning1 bland gängkriminella minskar skjutvapenvåld med en fjärdedel, över en tid av i genomsnitt cirka tre år. Psykosociala insatser till gängkriminella under frivård (t.ex. missbruksbehandling, stöd att söka arbete) kan minska fortsatt kriminalitet med knappt hälften upp till ett år efter avslutad insats. Insatser mot öppna drogmarknader i form av fokuserad avskräckning kan minska narkotikabrottslighet med cirka en tredjedel, över en tid av i genomsnitt ett och ett halvt år. Insatser med osäker effektivitet eller osäkra risker i form av stigmatisering och urholkat förtroende för viktiga samhällsfunktioner behöver utvärderas. 1. För att minska våld riktar samhället sina resurser mot de mest våldsdrivande individerna och de gäng de tillhör. De informeras om att våldet måste upphöra, vilka konsekvenser fortsatt våld kommer att ge samt erbjuder stöd till de som vill lämna det kriminella livet. Hur kan de viktigaste resultaten förstås? Nästan alla studier är genomförda i USA. Det kan påverka resultatens relevans i Sverige. Det enda säkra sättet att avgöra om insatserna fungerar även här är genom att låta införa och utvärdera insatserna i Sverige. I rapporten redovisas tre typer av insatser för att motverka gängrelaterad kriminalitet. Universella insatser ges brett till många personer, till exempel till alla elever vid en skola. Selektiva insatser erbjuds personer med en förhöjd risk för gängrelaterad kriminalitet. Indikerade insatser är inriktade mot gängkriminella personer. Det kan handla om kriminalvård, insatser mot öppna drogmarknader, och fokuserad avskräckning. Insatserna kan vara frivilliga eller ske med tvång. Resultaten tyder på att de indikerade insatserna är lika i flera avseenden. Framför allt förekommer samverkan mellan organisationer. Totalt förekommer tio olika delar, så kallade komponenter, som i varierande omfattning utgör de indikerade insatserna. Den vanligaste komponenten är psykosocialt stöd från socialtjänst, som förekom i alla utom en insats. Andra vanliga komponenter är tydliga förväntningar på gängmedlemmar och tydliga sanktioner. Underlaget är för litet för mer riktade analyser om några komponenter är viktigare än andra. Vad handlar rapporten om? Det primära syftet är att utvärdera psykosociala insatser som ska motverka barns och ungas medlemskap i gäng, attityder till gäng och gängrelaterad kriminalitet. Insatserna kan ges av socialtjänst eller andra relevanta aktörer (t.ex. kriminalvård, skola, polis, civilsamhälle). Rapporten belyser också etiska aspekter som kan vara aktuella när insatserna används. Det finns insatser där det inte har gått att vetenskapligt bedöma effekterna. Det gäller insatser som enbart ges på fångvårdsanstalt, familjebaserade insatser för antisociala tonåringar, medling, och insatser mot öppna drogmarknader för att minska skjutvapenvåld. Vilka studier ligger till grund för resultaten? Resultatet baseras på 43 studier om psykosociala insatser till barn och unga vuxna under 30 år. Studierna har publicerats mellan år 2001 och april 2023 i vetenskapliga tidskrifter. Endast studier med en jämförelsegrupp i form av standardbehandling har inkluderats.
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| 9. |
- Heilinger, Jan-Christoph, et al.
(författare)
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Public Health Ethics and Covid-19: The ethical dimensions of public health decision-making during a pandemic
- 2020
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- The Covid-19 pandemic forces policy makers and public health authorities to make ethically challenging decisions, often under conditions of uncertainty and under time pressure. In times of pandemics, ethical accountability is more important, not less. Understanding and handling of ethical problems require grounding in ethical theory and decision models, in combination with relevant facts from medicine, public health, law, economics, politics, etc. The perspective of public health ethics includes considerations from all ethical domains of relevance in a pandemic situation. This foundational policy brief provides an overview of the fundamental ethical dimensions of public health decision-making in the face of the Covid-19 pandemic. It references important existing ethical frameworks, some of which are based on extensive stakeholder vetting and public consultation. Its goal is to support decision-making that is justified and communicated as required by basic democratic principles and in the light of diverse values and norms present in democratic societies. These, however, may conflict with one another, making difficult trade-offs inevitable. Further policy briefs on specific topics will be consecutively developed by this ethics working group, including on ethical decision-making in policy and practice under conditions of uncertainty, ethics of vaccination, ethics of Covid-19-related contract-tracing apps, ethics of Covid-19 and age, ethics of experimental treatment, refugee health ethics and Covid-19.
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| 10. |
- Herlitz, Anders, 1981, et al.
(författare)
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‘Green’ bioethics widens the scope of eligible values and overrides patient demand: comment on Parker
- 2023
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Ingår i: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 49:2, s. 100-101
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- It is welcome to have concrete attempts to analyse the implications of environmental sustainability in clinical ethics. We discuss two interrelated weaknesses of Parker's article. These relate to the need in "green" bioethics to see beyond the normal healthcare ethical focus on health-related values related to individual patients, and to primarily adopt institutional ways of framing central decision problems.
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