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BACKGROUND: Introducing new technologies into healthcare practices may challenge professionals' traditional care cultures. The aim of this review was to map how the 'ethics of care' theoretical framework informs empirical studies of technology-mediated healthcare. METHOD: A scoping review was performed using eight electronic databases: CINAHL with full text, Academic Search Premier, MEDLINE, the Philosopher's Index, SocINDEX with Full Text, SCOPUS, APA PsycInfo and Web of Science. This was followed by citation tracking, and articles were assessed against the inclusion criteria. RESULTS: Of the 443 initial articles, 18 met the criteria and were included. We found that nine of the articles used the concept of 'ethics of care' (herein used interchangeably with the terms 'feminist ethics' or 'relational ethics') insubstantially. The remaining nine articles deployed care ethics (or its equivalent) substantially as an integrated theoretical framework and analytical tool. We found that several articles suggested an expansion of ethics of care to encompass technologies as part of contemporary care. Furthermore, ethics of care contributed to the empirical research by recognising both new relationships between patients and healthcare professionals as well as new ethical challenges. CONCLUSION: Ethics of care is sparsely used as a theoretical framework in empirical studies of technology-mediated healthcare practices. The use of ethics of care in technology-mediated care brings new dilemmas, relational tensions and vulnerabilities to the foreground. For ethics of care to be used more explicit in empirical studies, it is important that it is recognised by research community as an adequate, universal ethical theory.
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Atenção à Saúde , Envio de Mensagens de Texto , Humanos , Pessoal de Saúde , TecnologiaRESUMO
This paper investigates nursing home staff's experiences of the "final journey," when a resident's dead body is taken to the cold room. The account is based on data from ethnographic fieldwork in two nursing homes in Norway. Accompanying the dead body, staff found themselves "betwixt and between" - an anxious and ambiguous state, bordering on the uncanny. Liminality became a useful theoretical device in the data interpretation. The last offices - a rite of passage governing liminal states - provided a containing structure for this final journey but were not sufficient to banish the uncanny from the staff's experience.
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Antropologia Cultural , Casas de Saúde , Ansiedade , Humanos , NoruegaRESUMO
PURPOSE: Tamoxifen is an important targeted endocrine therapy in breast cancer. However, side effects and early discontinuation of tamoxifen remains a barrier for obtaining the improved outcome benefits of long-term tamoxifen treatment. Biomarkers predictive of tamoxifen side effects remain unidentified. The objective of this prospective population-based study was to investigate the value of tamoxifen metabolite concentrations as biomarkers for side effects. A second objective was to assess the validity of discontinuation rates obtained through pharmacy records with the use of tamoxifen drug monitoring. METHODS: Longitudinal serum samples, patient-reported outcome measures and pharmacy records from 220 breast cancer patients were obtained over a 6-year period. Serum concentrations of tamoxifen metabolites were measured by LC-MS/MS. Associations between metabolite concentrations and side effects were analyzed by logistic regression and cross table analyses. To determine the validity of pharmacy records we compared longitudinal tamoxifen concentrations to discontinuation rates obtained through the Norwegian Prescription database (NorPD). Multivariable Cox regression models were performed to identify predictors of discontinuation. RESULTS: At the 2nd year of follow-up, a significant association between vaginal dryness and high concentrations of tamoxifen, Z-4'-OHtam and tam-NoX was identified. NorPD showed a tamoxifen-discontinuation rate of 17.9% at 5 years and drug monitoring demonstrated similar rates. Nausea, vaginal dryness and chemotherapy-naive status were significant risk factors for tamoxifen discontinuation. CONCLUSIONS: This real-world data study suggests that measurements of tamoxifen metabolite concentrations may be predictive of vaginal dryness in breast cancer patients and verifies NorPD as a reliable source of adherence data.
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Antineoplásicos Hormonais/efeitos adversos , Antineoplásicos Hormonais/farmacocinética , Neoplasias da Mama/complicações , Neoplasias da Mama/epidemiologia , Monitoramento de Medicamentos , Tamoxifeno/efeitos adversos , Tamoxifeno/farmacocinética , Vagina/efeitos dos fármacos , Adulto , Idoso , Idoso de 80 Anos ou mais , Antineoplásicos Hormonais/uso terapêutico , Biomarcadores , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/tratamento farmacológico , Cromatografia Líquida , Feminino , Humanos , Adesão à Medicação , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Prognóstico , Inquéritos e Questionários , Tamoxifeno/uso terapêutico , Espectrometria de Massas em Tandem , Vagina/fisiopatologia , Adulto JovemRESUMO
In the original publication, the article title has been published incorrectly. Now the same has been corrected in this correction.
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This is a response to a short communication on our research presented in Solbrække et al. (Med Health Care Philos 20(1):89-103, 2017), which raises a series of serious allegations. Our article explored the rise of 'the breast cancer gene' as a field of medical, cultural and personal knowledge. We used the concept biological citizenship to elucidate representations of, and experiences with, hereditary breast cancer in a Norwegian context, addressing a research deficit. In our response to Møller and Hovig's (Med Health Care Philos 21(2):239-242, 2018a) opinionated piece, we start by questioning on which scientific grounds they base their knowledge claims and situate their criticism in a pre-determined positivist script, which exposes their incompetency when it comes to establishing a useful critique of our research. We tie this to an attitude of scientific supremacy, which reduces the complexity and specificity of different knowledges into a clichéd divide between 'hard evidence' and 'fiction'-presented in a predictable narrative which seeks to establish research protagonists and antagonists. We elaborate on the rationale of our qualitative approach to analyzing and interpreting situated and mediated aspects of BRCA 1/2. We counter claims that our research does harm to patients. We refer to a medical scandal emerging from Norway where 21 women were wrongfully diagnosed and surgically treated for a mis-interpreted cancer gene mutation. In conclusion, we stand by the integrity of our research as reported in the original paper. Scientific supremacy and pre-scripted criticism impose considerable obstacles for the possibility of establishing interdisciplinary dialogue across knowledge paradigms in health care and medicine. We therefore urge readers to reflect on how we can establish and sustain ethically careful and truthful dialogue-without doing violence to epistemological differences-to protect and advance the interdisciplinarity that constitutes the journal's scope.
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Neoplasias da Mama , Atitude , Atenção à Saúde , Feminino , Humanos , Conhecimento , NoruegaRESUMO
In this paper we explore the rise of 'the breast cancer gene' as a field of medical, cultural and personal knowledge. We address its significance in the Norwegian public health care system in relation to so-called biological citizenship in this particular national context. One of our main findings is that, despite its claims as a measure for health and disease prevention, gaining access to medical knowledge of BRCA 1/2 breast cancer gene mutations can also produce severe instability in the individuals and families affected. That is, although gene testing provides modern subjects with an opportunity to foresee their biological destiny and thereby become patients in waiting, it undoubtedly also comes with difficult existential dilemmas and choices, with implications that resonate beyond the individual and into different family and love relations. By elaborating on this finding we address the question of whether the empowerment slogan, which continues to be advocated through various health, BRCA and breast cancer discourses, reinforces a naïve or an idealized notion of the actively responsible patient: resourceful enough to seek out medical expertise and gain sufficient knowledge, on which to base informed decisions, thereby reducing the future risk of developing disease. In contrast to this ideal, our Norwegian informants tell a different story, in which there is no apparent heroic mastery of genetic fates, but rather a pragmatic attitude to dealing with a dire situation over which they have little control, despite having complied with medical advice through national guidelines and follow-up procedures for BRCA 1/2 carriers. In conclusion we claim that the sense of safety that gene testing and its associated medical solutions allegedly promise to provide proved illusory. Although BRCA-testing offers the potential for protection from adverse DNA-heritage, administered through possibilities for self-monitoring and self-management of the body, the feeling of 'being in good health' has hardly been reinforced by the emergence of gene technology.
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Neoplasias da Mama/genética , Adulto , Fatores Etários , Idoso , Neoplasias da Mama/psicologia , Feminino , Genes BRCA1 , Genes BRCA2 , Predisposição Genética para Doença/genética , Predisposição Genética para Doença/psicologia , Testes Genéticos , Humanos , Pessoa de Meia-Idade , Noruega , Autoimagem , Sobreviventes/psicologiaRESUMO
BACKGROUND: The advent of digital health technologies has transformed the landscape of health care, influencing the dynamics of the physician-patient relationship. Although these technologies offer potential benefits, they also introduce challenges and complexities that require ethical consideration. OBJECTIVE: This scoping review aims to investigate the effects of digital health technologies, such as digital messaging, telemedicine, and electronic health records, on the physician-patient relationship. To understand the complex consequences of these tools within health care, it contrasts the findings of studies that use various theoretical frameworks and concepts with studies grounded in relational ethics. METHODS: Using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines, we conducted a scoping review. Data were retrieved through keyword searches on MEDLINE/PubMed, Embase, IEEE Xplore, and Cochrane. We screened 427 original peer-reviewed research papers published in English-language journals between 2010 and 2021. A total of 73 papers were assessed for eligibility, and 10 of these were included in the review. The data were summarized through a narrative synthesis of the findings. RESULTS: Digital health technologies enhance communication, improve health care delivery efficiency, and empower patients, leading to shifts in power dynamics in the physician-patient relationship. They also potentially reinforce inequities in health care access due to variations in technology literacy among patients and lead to decreases in patient satisfaction due to the impersonal nature of digital interactions. Studies applying a relational ethics framework have revealed the nuanced impacts of digital health technologies on the physician-patient relationship, highlighting shifts toward more collaborative and reciprocal care. These studies have also explored transitions from traditional hierarchical relationships to mutual engagement, capturing the complexities of power dynamics and vulnerabilities. Other theoretical frameworks, such as patient-centered care, and concepts, such as patient empowerment, were also valuable for understanding these interactions in the context of digital health. CONCLUSIONS: The shift from hierarchical to collaborative models in the physician-patient relationship not only underscores the empowering potential of digital tools but also presents new challenges and reinforces existing ones. Along with applications for various theoretical frameworks and concepts, this review highlights the unique comprehensiveness of a relational ethics perspective, which could provide a more nuanced understanding of trust, empathy, and power dynamics in the context of digital health. The adoption of relational ethics in empirical research may offer richer insights into the real-life complexities of the physician-patient relationship, as mediated by digital technologies.
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INTRODUCTION: Breast cancer is still the most common malignancy among women worldwide. The Prospective Breast Cancer Biobank (PBCB) collects blood and urine from patients with breast cancer every 6 or 12 months for 11 years from 2011 to 2030 at two university hospitals in Western Norway. The project aims to identify new biomarkers that enable detection of systemic recurrences at the molecular level. As blood represents the biological interface between the primary tumour, the microenvironment and distant metastases, liquid biopsies represent the ideal medium to monitor the patient's cancer biology for identification of patients at high risk of relapse and for early detection systemic relapse.Including patient-reported outcome measures (PROMs) allows for a vast number of possibilities to compare PROM data with biological information, enabling the study of fatigue and Quality of Life in patients with breast cancer. METHODS AND ANALYSIS: A total of 1455 patients with early-stage breast cancer are enrolled in the PBCB study, which has a one-armed prospective observational design. Participants consent to contribute liquid biopsies (i.e., peripheral blood and urine samples) every 6 or 12 months for 11 years. The liquid biopsies are the basis for detection of circulating tumour cells, circulating tumour DNA (ctDNA), exosomal micro-RNA (miRNA), miRNA in Tumour Educated Platelet and metabolomic profiles. In addition, participants respond to 10 PROM questionnaires collected annually. Moreover, a control group comprising 200 women without cancer aged 25-70 years will provide the same data. ETHICS AND DISSEMINATION: The general research biobank PBCB was approved by the Ministry of Health and Care Services in 2007, by the Regional Ethics Committee (REK) in 2010 (#2010/1957). The PROM (#2011/2161) and the biomarker study PerMoBreCan (#2015/2010) were approved by REK in 2011 and 2015 respectively. Results will be published in international peer reviewed journals. Deidentified data will be accessible on request. TRIAL REGISTRATION NUMBER: NCT04488614.
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Neoplasias da Mama , MicroRNAs , Adulto , Idoso , Bancos de Espécimes Biológicos , Biomarcadores , Neoplasias da Mama/diagnóstico , Feminino , Humanos , Biópsia Líquida , Pessoa de Meia-Idade , Recidiva Local de Neoplasia , Estudos Observacionais como Assunto , Medidas de Resultados Relatados pelo Paciente , Estudos Prospectivos , Qualidade de Vida , Microambiente TumoralRESUMO
AIM: To investigate how migrant nursing home staff relate to religion in their care for patients who are approaching death. METHOD AND THEORY: Individual in-depth interviews were conducted with 16 migrant health care workers from five nursing homes in Norway. The overall analytic approach was hermeneutical. The parts and the whole were interpreted in light of each other to gain a "thick description" of the data material in order to show the ways in which experiential meaning-making draws on cultural webs of sign ificance. FINDINGS: Religion held various meanings for the migrant health care workers interviewed. Religious and cultural competence and knowledge of migrant nursing home staff was neither asked for by the management nor discussed in the staff group. The way our participants related to religion at work was therefore based on individual preferences and internalized practices. CONCLUSION AND IMPLICATION FOR PRACTICE: Organized reflection groups among staff are needed in order to integrate and develop religious literacy in the multicultural nursing home setting. Such reflection groups can help the individual staff member to perform holistic nursing, that is, to be attentive of the interconnectedness of biological, social, psychosocial, and spiritual aspects in a human being.
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Recursos Humanos de Enfermagem , Migrantes , Atitude do Pessoal de Saúde , Humanos , Casas de Saúde , ReligiãoRESUMO
INTRODUCTION: The world's population is ageing. As older persons live longer and increase in number, society faces a greater disease burden and, in public welfare, a corresponding resource deficit. New technology is one solution to this deficit but there is scarce knowledge about ethical aspects of such innovations in care practices. In CARING FUTURES, we address this scarcity by interrogating how new technology in care can become ethically sound and, correspondingly, how ethics of care can become more technology aware. Our concern is to protect quality care for the future. METHODS AND ANALYSIS: CARING FUTURES advances transdisciplinarity through knowledge exchange around technology-mediated care and ethics of care, involving key stakeholders. We rely on established and innovative methods to generate experience-near and practice-near knowledge. Through this empirical research, we seek to expand understanding of technology-mediated care and to enrich ethics of care theory. ETHICS AND DISSEMINATION: Empirical studies have been approved or await approval by national ethics committees. CARING FUTURES is designed to create societal impact through Knowledge Transfer Events targeting stakeholders in health, care and welfare, and Educational Packages for students of care-providing knowledge-exchange forums for future academics and practitioners of care. The project's societal impact is also ensured in that participating researchers are also practitioners and/or educators of care personnel for the future. Project findings will be disseminated through scientific publications and conference presentations. Through communication in both traditional and digital media platforms, we engage in dialogues between researchers, user groups, policy makers and the wider public.
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Internet , Tecnologia , Pessoal Administrativo , Idoso , Idoso de 80 Anos ou mais , Atenção à Saúde , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND: Expressive writing has been shown to improve quality of life, fatigue, and posttraumatic stress among breast cancer patients across cultures. Understanding how and why the method may be beneficial to patients can increase awareness of the psychosocial impact of breast cancer and enhance interventional work within this population. Qualitative research on experiential aspects of interventions may inform the theoretical understanding and generate hypotheses for future studies. AIM: The aim of the study was to explore and describe the experience and feasibility of expressive writing among women with breast cancer following mastectomy and immediate or delayed reconstructive surgery. METHODS: Seven participants enrolled to undertake 4 episodes of expressive writing at home, with semistructured interviews conducted afterward and analyzed using experiential thematic analysis. RESULTS: Three themes emerged through analysis: writing as process, writing as therapeutic, and writing as a means to help others. CONCLUSIONS: Findings illuminate experiential variations in expressive writing and how storytelling encourages a release of cognitive and emotional strains, surrendering these to reside in the text. The method was said to process feelings and capture experiences tied to a new and overwhelming illness situation, as impressions became expressions through writing. Expressive writing, therefore, is a valuable tool for healthcare providers to introduce into the plan of care for patients with breast cancer and potentially other cancer patient groups. IMPLICATIONS FOR PRACTICE: This study augments existing evidence to support the appropriateness of expressive writing as an intervention after a breast cancer diagnosis. Further studies should evaluate its feasibility at different time points in survivorship.