| 1. |
- 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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| 2. |
- Hagström, Josefin, et al.
(författare)
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Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online
- 2024
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Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 1422-1423
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Tidskriftsartikel (refereegranskat)abstract
- Patients feeling offended by reading records online is a concern among healthcare professionals, however previously published work has focused on adult patients. Here, a survey was used to explore and compare experiences of offense among adolescents (15-19 years old) and young adults (20-24 years old). Findings indicated that while the ratio of those offended did not differ between adolescents and young adults, reasons for feeling offended did.
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| 3. |
- Pasquini, Mirko, 1991
(författare)
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Like ticking time bombs. Improvising structural competency to ‘Defuse’ the exploding of violence against emergency care workers in Italy
- 2023
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Ingår i: Global Public Health. - : Informa UK Limited. - 1744-1692 .- 1744-1706. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- While violence against health care workers is being progressively recognised as a serious problem in the healthcare industry, it remains an under-studied area of enquiry in global public health. Anthropologists have long observed that violence toward patients is tied to institutional care practises in multiple ways, including repression, misrecognition and silencing. But research on health care staff’s experience of violence is still lacking. This article aims to address this literature gap by providing research on the daily experience of vulnerability to violence that health care providers face during their work. To do so, the paper ethnographically explores the effects and perception of violence against health care workers in an emergency department (ED) in northern Italy, a place with a dramatic escalation of violent incidents. The article illustrates how the ED staff attended to the experience of suffering of potentially violent patients. In so doing, ED professionals shifted the responsibility of violence against them from violent individuals to violent structures shaping health inequities. The paper thus argues that ED professionals display a structural competence perspective when dealing with violence.
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| 4. |
- 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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| 5. |
- Söderberg, Andreas, et al.
(författare)
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Patients’ Experiences of Participation in High-Security, Forensic Psychiatric Care
- 2022
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Ingår i: Issues in Mental Health Nursing. - : Informa UK Limited. - 0161-2840 .- 1096-4673. ; 43:7, s. 683-692
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Tidskriftsartikel (refereegranskat)abstract
- The role of patient participation in forensic psychiatric care is unclear, but has been emphasised as important in recent research. This study aims to describe patients’ lived experiences of participation in high-security, forensic psychiatric settings. Sixteen patient interviews were performed in this phenomenological study and analysed with a Reflective Lifeworld Research approach (RLR). Results show that participation must be understood in relation to its opposite construct, non-participation. Participation can thus be explained as situations where non-participation is less visible. Actions to develop the training of patient-staff interactions for forensic psychiatric staff to promote patient participation are called for.
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| 6. |
- Sallam, Malik, et al.
(författare)
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HIV Knowledge and Stigmatizing Attitude towards People Living with HIV/AIDS among Medical Students in Jordan
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1661-7827 .- 1660-4601. ; 19:2
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Tidskriftsartikel (refereegranskat)abstract
- The stigmatizing attitude towards people living with HIV/AIDS (PLWHA) can be a major barrier to effective patient care. As future physicians, medical students represent a core group that should be targeted with focused knowledge and adequate training to provide patient care without prejudice. The aim of the current study was to examine HIV/AIDS knowledge, and the stigmatizing attitude towards PLWHA, among medical students in Jordan. The current study was based on a self-administered online questionnaire, which was distributed during March–May 2021, involving students at the six medical schools in Jordan, with items assessing demographics, HIV/AIDS knowledge, and HIV/AIDS stigmatizing attitude, which was evaluated using the validated HIVstigma scale. The total number of respondents was 1362, with predominance of females (n = 780, 57.3%). Lack of HIV/AIDS knowledge among the study participants was notable for the following items: HIV transmission through breastfeeding (40.8% correct responses), HIV is not transmitted through saliva (42.6% correct responses), and vertical transmission of HIV can be prevented (48.8% correct responses). Approximately two-thirds of the respondents displayed a positive attitude towards PLWHA. For six out of the 14 HIV/AIDS knowledge items, lack of knowledge was significantly correlated with a more negative attitude towards PLWHA. Multinomial regression analysis showed that a significantly more negative attitude towards PLWHA was found among the preclinical students compared to the clinical students (odds ratio (OR): 0.65, 95% confidence interval (CI): 0.43–0.97, p = 0.036); and that affiliation to medical schools that were founded before 2000 was associated with a more positive attitude towards PLWHA compared to affiliation to recently founded medical schools in the country (OR: 1.85, 95% CI: 1.42–2.42, p < 0.001). About one-third of medical students who participated in the study displayed a negative attitude towards PLWHA. Defects in HIV/AIDS knowledge were detected for aspects involving HIV transmission and prevention, and such defects were correlated with a more negative attitude towards PLWHA. It is recommended to revise the current medical training curricula, and to tailor improvements in the overall HIV/AIDS knowledge, which can be reflected in a more positive attitude towards PLWHA, particularly for the recently established medical schools in the country.
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| 7. |
- Eklund Saksberg, My, et al.
(författare)
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Nurses’ priority-setting for older nursing home residents during COVID-19
- 2024
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Ingår i: Nursing Ethics. - : Sage Publications. - 0969-7330 .- 1477-0989.
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Tidskriftsartikel (refereegranskat)abstract
- Background: Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses’ prioritizations in their work to achieve well-being and health for nursing home residents. Aim: The aim of this study was to explore nursing home nurses’ priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. Research design, participants, and research context: We conducted a qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. Ethical considerations: Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). Findings: We identified an overarching theme—nursing home nurses struggling on multiple fronts, “just do it”—and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives’ expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. Conclusions: Nurses’ priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses’ priorities. Nursing home nurses need organizational and managerial support to prioritize.
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| 8. |
- Engelbak Nielsen, Zandra, et al.
(författare)
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Are cancer patients better off if they participate in clinical trials? : A mixed methods study
- 2020
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Ingår i: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407 .- 1471-2407. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundResearch and cancer care are closely intertwined; however, it is not clear whether physicians and nurses believe that clinical trials offer the best treatment for patients and, if so, whether this belief is justified. The aim of this study was therefore: (i) to explore how physicians and nurses perceive the benefits of clinical trial participation compared with standard care and (ii) whether it is justified to claim that clinical trial participation improves outcomes for cancer patients.MethodsA mixed methods approach was used employing semi-structured interviews with 57 physicians and nurses in oncology and haematology and a literature review of the evidence for trial superiority, i.e. the idea that receiving treatment in a clinical trial leads to a better outcome compared with standard care. Inductive thematic analysis was used to examine the interview data. A literature review comprising nine articles was conducted according to a conceptual framework developed by Peppercorn et al. and evaluated recent evidence on trial superiority.ResultsOur findings show that many physicians and nurses make claims supporting trial superiority, however very little evidence is available in the literature comparing outcomes for trial participants and non-participants that supports their assertions.ConclusionsDespite the recent rapid development and use of targeted therapy and immunotherapy, we find no support for trial participation to provide better outcomes for cancer patients than standard care. Hence, our present results are in line with previous results from Peppercorn et al. A weaker version of the superiority claim is that even if a trial does not bring about a direct positive effect, it brings about indirect positive effects. However, as the value of such indirect effects is dependent on the individual’s specific circumstances and preferences, their existence cannot establish the general claim that treatment in trials is superior. Belief in trial superiority is therefore unfounded. Hence, if such beliefs are communicated to patients in a trial recruitment context, it would provide misleading information. Instead emphasis should be on patients volunteering to give an altruistic contribution to the furthering of knowledge and to the potential benefit of future patients.
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| 9. |
- Glasdam, Stinne, et al.
(författare)
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Nurses’ refusals of patient involvement in their own palliative care
- 2020
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Ingår i: Nursing Ethics. - : SAGE Publications. - 1477-0989 .- 0969-7330. ; 27:8, s. 1618-1630
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Tidskriftsartikel (refereegranskat)abstract
- Background:Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice.Aim:To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective.Method:A case study based on an anthropological field study among patients with advanced cancer in Denmark.Ethical considerations:Followed the principles of the Helsinki Declaration.Findings:Two cases illustrated situations where nurses refused patient involvement in their own case.Discussion:Focus on two ethical issues, namely ‘including patients’ experiences in palliative nursing care’ and ‘relational distribution of power and knowledge’, inspired primarily by Hannah Arendt’s concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients’ palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned ‘thoughtlessness’ of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients’ invitations to involve them in their own case.Conclusion:The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that ‘thoughtlessness’ appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses’ ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare.
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| 10. |
- Nyman, Marielle, et al.
(författare)
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“You Should Just Keep Your Mouth Shut and Do As We Say”: Forensic Psychiatric Inpatients’ Experiences of Risk Assessments
- 2022
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Ingår i: Issues in Mental Health Nursing. - : Informa UK Limited. - 1096-4673 .- 0161-2840. ; 43:2, s. 137-145
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Tidskriftsartikel (refereegranskat)abstract
- This study presents findings of forensic inpatients’ experiences of their role in the risk assessment process. Eleven patients, recruited from two forensic psychiatric clinics in Sweden, participated in semi-structured interviews which were analyzed using qualitative content analysis. The analysis of their experiences resulted in the information of three categories: Taking responsibility for one’s own situation, in terms of taking responsibility for aspects of one’s care, taking charge of the present, emphasizing potential challenges in grasping reality, and being involved and having impact, which concerns feelings of being involved in discussions related to one’s care and treatment versus feelings of being an outsider.
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