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BACKGROUND: A growing body of evidence shows that many nursing home residents' basic care needs are neglected, and residents do not receive qualitatively good care. This neglect challenges nursing staff´s professional and personal ideals and standards for care and may contribute to moral distress. The aim of this study was to investigate how nursing staff manage being a part of a neglectful work culture, based on the research question: "How do nursing home staff manage their moral distress related to neglectful care practices?" METHODS: A qualitative design was chosen, guided by Charmaz´s constructivist grounded theory. The study was based on 10 individual interviews and five focus group discussions (30 participants in total) with nursing home staff working in 17 different nursing homes in Norway. RESULTS: Nursing staff strive to manage their moral distress related to neglectful care practices in different ways: by favouring efficiency and tolerating neglect they adapt to and accept these care practices. By disengaging emotionally and retreating physically from care they avoid confronting morally distressing situations. These approaches may temporarily mitigate the moral distress of nursing staff, whilst also creating a staff-centred and self-protecting work culture enabling neglect in nursing homes. CONCLUSIONS: Our findings represent a shift from a resident-centred to a staff-centred work culture, whereby the nursing staff use self-protecting strategies to make their workday manageable and liveable. This strongly indicates a compromise in the quality of care that enables the continuation of neglectful care practices in Norwegian nursing homes. Finding ways of breaking a downward spiralling quality of care are thus a major concern following our findings.
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Teoria Fundamentada , Casas de Saúde , Humanos , Masculino , Feminino , Princípios Morais , Pessoa de Meia-Idade , Idoso , Noruega , Adulto , Recursos Humanos de Enfermagem/psicologia , Abuso de Idosos/psicologia , Pesquisa Qualitativa , Instituição de Longa Permanência para Idosos , Estresse Psicológico/psicologia , Estresse Psicológico/terapia , Grupos Focais/métodosRESUMO
Artificial intelligence (AI) is increasingly used in health care to improve diagnostics and treatment. Decision-making tools intended to help professionals in diagnostic processes are developed in a variety of medical fields. Despite the imagined benefits, AI in health care is contested. Scholars point to ethical and social issues related to the development, implementation, and use of AI in diagnostics. Here, we investigate how three relevant groups construct ethical challenges with AI decision-making tools in prostate cancer (PCa) diagnostics: scientists developing AI decision support tools for interpreting MRI scans for PCa, medical doctors working with PCa and PCa patients. This qualitative study is based on participant observation and interviews with the abovementioned actors. The analysis focuses on how each group draws on their understanding of 'good health care' when discussing ethical challenges, and how they mobilise different registers of valuing in this process. Our theoretical approach is inspired by scholarship on evaluation and justification. We demonstrate how ethical challenges in this area are conceptualised, weighted and negotiated among these participants as processes of valuing good health care and compare their perspectives.
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INTRODUCTION: Residents in nursing homes do not always get qualitatively good nursing care, and research shows that residents' basic care needs are sometimes neglected. Neglect in nursing homes is a challenging and complex issue, yet a preventable one. Nursing home staff are at the frontline of detecting and preventing neglect but may also be the ones causing it. It is essential to understand why and how neglect happens in order to recognize, expose, and prevent its occurrence. Our aim was to generate new knowledge on the processes leading to and allowing neglect to continue in Norwegian nursing homes, by studying how nursing home staff perceive and reflect on when nursing home residents are neglected in their daily practice. METHODS: A qualitative exploratory design was used. The study was based on five focus group discussions (20 participants, total) and ten individual interviews with nursing home staff from 17 different nursing homes in Norway. The interviews were analysed according to Charmaz constructivist grounded theory. RESULTS: In order to make neglect an acceptable practice, nursing home staff apply different strategies. These strategies were identified as when the staff legitimize neglect by neglecting neglect, when the staff are not recognizing their own behaviour as neglectful, as expressed in their actions and language, and normalizing missed care when resources are lacking and nursing staff are rationing care. CONCLUSIONS: The gradual shift between judging actions as neglectful or not are made possible when nursing home staff legitimize neglect by not recognizing their practice as neglective, thus neglecting neglect or when they are normalizing missed care. Increased awareness and reflections on these processes may be a way of reducing the risk of and preventing neglect in nursing homes.
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Casas de Saúde , Recursos Humanos de Enfermagem , Humanos , Instituições de Cuidados Especializados de Enfermagem , Pesquisa Qualitativa , NoruegaRESUMO
A rapidly growing proportion of health research uses 'secondary data': data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research (ie, where data are collected from participants directly), it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual research findings in the context of primary research, to determine if they can be applied to secondary research. We conclude that they cannot. We then propose that the nature of the relationship between researchers and participants is what gives rise to particular moral obligations, including the obligation to disclose individual results. We argue that the relationship between researchers and participants in secondary research does not generate an obligation to disclose. However, we also argue that the biobanks or data archives which collect and provide access to secondary data may have such an obligation, depending on the nature of the relationship they establish with participants.
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Obrigações Morais , Pesquisadores , HumanosRESUMO
BACKGROUND: Colorectal cancer (CRC) is a common cancer worldwide, with increasing numbers surviving and living with long-term side effects from treatment. Physical exercise during or after treatment may have several beneficial effects, but knowledge of CRC patients' reflections on exercising during adjuvant therapy is limited. The aim of this study was to explore the experiences of CRC patients participating in a supervised exercise program during adjuvant chemotherapy. METHODS: This study included CRC patients participating in two intervention studies with individually tailored and supervised combinations of endurance, resistance, and balance exercises during adjuvant chemotherapy. Semi-structured interviews performed at the beginning, during, and immediately after the intervention period from 15 participants were analyzed using thematic analysis. RESULTS: Four main themes identified were "structuring life with cancer," "motivation to exercise," "training experiences," and "effects of exercise." Scheduled appointments gave structure to daily life and served as an external motivational factor. The individual adjustments of exercise gave a sense of security and helped improving adherence, especially when feeling depressed or fatigued. Common expectations were improvement of endurance and strength and counteracting negative effects of chemotherapy. Experienced positive effects from exercising, both mentally and physically, contributed to inner motivation and inspired continued exercising after the study period. CONCLUSION: This study offers important insights into CRC patients' experiences of participating in a physical exercise program during adjuvant chemotherapy. Based on our findings, we recommend supervised and individually tailored physical exercise during adjuvant chemotherapy to this patient group.
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Quimioterapia Adjuvante , Neoplasias Colorretais/psicologia , Neoplasias Colorretais/terapia , Terapia por Exercício , Motivação , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/tratamento farmacológico , Terapia por Exercício/métodos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Força Muscular , Resistência Física , Pesquisa QualitativaRESUMO
Why do some people withdraw from biobank studies? To our knowledge, very few studies have been done on the reflections of biobank ex-participants. In this article, we report from such a study. 16 years ago, we did focus group interviews with biobank participants and ex-participants. We found that the two groups interestingly shared worries concerning the risks involved in possible novel uses of their biobank material, even though they drew opposite conclusions from their worries. Revisiting these interviews today reveals a remarkable relevance to present concerns, since the possible developments that worried ex-participants and participants 16 years ago now are becoming realities. Drawing on conceptual distinctions by sociologist and philosopher Niklas Luhmann, we argue that while ex-participants express a loss of trust in the biobank institution to manage the use of their biobank material in a legitimate way, remaining participants expressed confidence in the management of the biobank institution to secure their interests. This analysis brings out important aspects of emerging trends in biobank research participation.
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Bancos de Espécimes Biológicos/organização & administração , Pesquisa Biomédica/organização & administração , Confiança , Bancos de Espécimes Biológicos/normas , Pesquisa Biomédica/normas , Confidencialidade/normas , Feminino , Grupos Focais , Humanos , Consentimento Livre e Esclarecido/normas , Masculino , MotivaçãoRESUMO
BACKGROUND: Mammography screening may cause psychosocial harm for women experiencing a false-positive screening result. Previous studies suggest long-term consequences. The aim of the present study was to assess psychosocial consequences of false-positive findings on screening mammography within a six month follow-up. METHODS: A prospective matched cohort survey study using the questionnaire 'Consequences of Screening for Breast Cancer' (COS-BC), which was translated from Danish to Norwegian. Psychometric analyses investigated the measurement properties of the Norwegian version. Two screening clinics in Norway distributed the survey to 299 women with an abnormal mammogram and 541 women with a normal screen. Women received the questionnaire when receiving the screening result, and one and six months after screening. RESULTS: At six months, statistically significant differences appeared in two scales: existential values and breast examination. At six-month follow-up, women with false-positive results showed no statistically significant differences from women diagnosed with breast cancer in three outcomes: sense of dejection, anxiety, and keeping my mind off things. CONCLUSION: Our results indicate that the psychosocial consequences from having false-positive screening mammography results diminish after six months. The results support previous research describing breast-specific outcomes. However, our results indicate that Norwegian women are less frightened than other Scandinavian mammography screening participants.
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Neoplasias da Mama/diagnóstico , Reações Falso-Positivas , Mamografia/psicologia , Programas de Rastreamento/psicologia , Idoso , Feminino , Humanos , Pessoa de Meia-Idade , Noruega , Estudos Prospectivos , PsicometriaRESUMO
In this article we explore women's experiences with 6 years of mammography screening. Regular and repeated mammography screening is promoted as an important tool for disease prevention among women worldwide. The purpose of the present study was to explore how continued participation in screening influences how women perceive screening and breast cancer. We carried out focus groups with 24 screening participants in 2003 and 2009. Our analysis highlights that while women were excited about the examination in 2003, it was perceived as routine in 2009. Waiting for the results became easier over the years, while stress related to receiving the results letter did not diminish. Knowledge of risk factors for breast cancer did not change. Personal risk assessment remained low, though high incidence of cancer among acquaintances suggested high risk for breast cancer among women in general. Analysis of participant experiences suggests that continuous participation in screening has led surveillance medicine to become a part of ordinary life.
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Neoplasias da Mama/diagnóstico , Neoplasias da Mama/prevenção & controle , Conhecimentos, Atitudes e Prática em Saúde , Mamografia/estatística & dados numéricos , Idoso , Detecção Precoce de Câncer , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Mamografia/métodos , Pessoa de Meia-Idade , Noruega , Estudos Prospectivos , Pesquisa Qualitativa , Fatores de RiscoRESUMO
Artificial intelligence (AI) is increasingly used for diagnostic purposes in cancer care. Prostate cancer is one of the most prevalent cancers affecting men worldwide, but current diagnostic approaches have limitations in terms of specificity and sensitivity. Using AI to interpret MR images in prostate cancer diagnostics shows promising results, but raises questions about implementation, user acceptance, trust, and doctor-patient communication. Drawing on approaches from the sociology of expectations and theories about sociotechnical imaginaries, we explore men's expectations of artificial intelligence for prostate cancer diagnostics. We conducted ten focus groups with 48 men aged 54-85 in Norway with various experiences of prostate cancer diagnostics. Five groups of men had been treated for prostate cancer, one group was on active surveillance, two groups had been through prostate cancer diagnostics without having a diagnosis, and two groups of men had no experience with prostate cancer diagnostics or treatment. Data was subject to reflexive thematic analysis. Our analysis suggests that men's expectations of AI for prostate cancer diagnostics come from two perspectives: Technology-centered expectations that build on their conceptions of AI's form and agency, and human-centered expectations of AI that build on their perceptions of patient-professional relationships and decision-making processes. These two perspectives are intertwined in three imaginaries of AI: The tool imaginary, the advanced machine imaginary, and the intelligence imaginary - each carrying distinct expectations and ideas of technologies and humans' role in decision-making processes. These expectations are multifaceted and simultaneously optimistic and pessimistic; while AI is expected to improve the accuracy of cancer diagnoses and facilitate more personalized medicine, AI is also expected to threaten interpersonal and communicational relationships between patients and healthcare professionals, and the maintenance of trust in these relationships. This emphasizes how AI cannot be implemented without caution about maintaining human healthcare relationships.
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Inteligência Artificial , Neoplasias da Próstata , Masculino , Humanos , Grupos Focais , Neoplasias da Próstata/diagnóstico , Comunicação , Instalações de SaúdeRESUMO
Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: "Biological materials should not, as such, give rise to financial gain". Similarly, Norwegian legislation reads: "Commercial exploitation of research participants, human biological material and personal health data in general is prohibited". Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants' major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing.
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Bancos de Espécimes Biológicos/ética , Bancos de Espécimes Biológicos/organização & administração , Comércio/ética , Adulto , Idoso , Idoso de 80 Anos ou mais , Bancos de Espécimes Biológicos/legislação & jurisprudência , Comércio/legislação & jurisprudência , Feminino , Grupos Focais , Guias como Assunto , Humanos , Consentimento Livre e Esclarecido/ética , Consentimento Livre e Esclarecido/legislação & jurisprudência , Masculino , Pessoa de Meia-Idade , Noruega , Pessoalidade , Filosofia MédicaRESUMO
BACKGROUND: Research shows that nursing home residents' basic care needs are often neglected, potentially resulting in incidents that threaten patients' safety and quality of care. Nursing staff are at the frontline for identifying such care practices but may also be at the root of the problem. The aim of this study was to generate new knowledge on reporting instances of neglect in nursing homes based on the research question "How is neglect reported and communicated by nursing home staff?" METHODS: A qualitative design guided by the principles of constructivist grounded theory was used. The study was based on five focus-group discussions (20 participants) and 10 individual interviews with nursing staff from 17 nursing homes in Norway. RESULTS: Neglect in nursing homes is sometimes invisible due to a combination of personal and organizational factors. Staff may minimize "missed care" and not consider it neglect, so it is not reported. In addition, they may be reluctant to acknowledge or reveal their own or colleagues' neglectful practices. CONCLUSION: Neglect of residents in nursing homes may continue to occur if nursing staff's reporting practices are making neglect invisible, thus proceeding to compromise a resident's safety and quality of care for the foreseeable future.
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Women participating in biannual mammography screening for 20 years have a cumulative risk of 20% of being recalled. We conducted a prospective qualitative interview study with eight nonsymptomatic women recalled after mammography screening. These women expressed mixed emotions over being recalled. Information about recall rates and breast cancer risk was seen as alarming, and cancer risk estimates were seen by some as high. The short time between recall and examination was reassuring, but it was also perceived as an indication of malignancy. Despite distress from examinations, most of the women continued to want medical examinations to detect cancer early.
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Neoplasias da Mama/diagnóstico , Neoplasias da Mama/psicologia , Detecção Precoce de Câncer/psicologia , Mamografia/psicologia , Programas de Rastreamento/psicologia , Adaptação Psicológica , Adulto , Ansiedade/psicologia , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Pessoa de Meia-Idade , Noruega , Estudos Prospectivos , Qualidade de Vida , Saúde da MulherRESUMO
BACKGROUND: Oral anticancer therapies can be self-administered by patients outside the hospital setting, which poses challenges of adherence to a drug plan and monitoring of side effects. Modern information technology may be developed and implemented to address these pertinent issues. OBJECTIVE: The aim of this study was to explore how a smartphone app developed through a stepwise, iterative process can help patients using oral chemotherapy to take their drug, and to report adherence and side effects in a reliable and verifiable manner. METHODS: Fourteen patients starting capecitabine treatment were included in this study and used the smartphone app in addition to regular follow up of capecitabine treatment. Nine of these patients fulfilled the treatment plan and were interviewed based on a semistructured interview guide and the System Usability Scale (SUS). In addition, two focus groups were completed with 7 oncologists and 7 oncology nurses, respectively. Interview data were analyzed in accordance with the principles of systematic text condensation. Features of the app were also assessed. RESULTS: The smartphone app provided the patients with a feeling of reassurance regarding correct adherence of their oral chemotherapy treatment. They used the app as a memory tool about their treatment and possible serious side effects, as well as for treatment education. Patients expressed concerns about using the app to report side effects that were not considered to be obviously serious, fearing overreporting. The health personnel expressed an overall positive attitude to integrate this new tool in their everyday work. CONCLUSIONS: Patients on oral chemotherapy treatment at home felt safe and found the app to be helpful. The app promoted learning about their treatment and made the patients more independent of the cancer clinic, reducing the need for the clinic's limited resources for follow up of patients on oral anticancer medications.
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Among the instruments offered to citizens via digital media are risk calculators, aiming at identifying individuals at high risk of various diseases. These calculators present us with both epistemological and socioethical challenges. Tracking the history of individual risk models, this article provides an analysis looking into their content, construction, use and functions. Epistemologically, the notion of risk factor epidemiology frames an approach to public health that goes through the identification of high-risk individuals, providing a way of making public health doable without involving social, cultural and economical factors in the risk assessments. Instead, ethnicity is included in many calculators, serving as boundary objects that enable epidemiologists to avoid addressing its inherent epistemological challenges. Through this notion of individual risk, a discourse is created that provides us with the narrative of the empowered vulnerable global citizen, which is given room to look after her or his risky self, while ignoring the structural and political factors influencing it. In doing so, flawed calculator construction provides ample risk of getting the wrong number.
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Disseminação de Informação/métodos , Internet/estatística & dados numéricos , Informática Médica/organização & administração , Segurança do Paciente , Feminino , Saúde Global , Humanos , Masculino , Saúde Pública , Risco AjustadoRESUMO
Osteoporosis has been labelled the disease of the 21st century. Over the past couple of centuries there have been various notions of this disease in medicine. In the present medical discourse, the emphasis is on prevention rather than treatment, making osteoporosis into a major risk factor for bone fractures. In Norway, osteoporosis is a particularly prevalent condition, leading to bone mass measurements being included in several large health surveys. In a follow-up study of the second round of the Nord-Trøndelag Health Study (HUNT), women aged 55-75 years were invited to participate in focus groups to talk about their experiences in relation to their bone density measurements. Findings from these focus groups show that osteoporosis is perceived as a disease characterized by brittle bones, pain and fractures. The physical appearance of a hunchbacked old woman is a dominant way of portraying the disease. It is mainly perceived as prevalent among women, but evidence that men can get it is provided through the example of a famous male athlete who became osteoporotic. Causal explanations for the disease are dominated by culturally shaped anecdotal evidence wherein medical knowledge has been included. Limits to lay constructions of osteoporosis based on such evidence are discussed. Talking about osteoporosis across generations the women applied different explanations for the condition over time. In doing so, they also showed that they have adopted the morality of the new public health where the individual has control over her health through self-governance. Whereas this was no option for their grandmothers, their grandchildren's generation was seen as one failing to meet their obligations to become healthy citizens. The lay construction of osteoporosis can thus be seen as one that has developed from a situation where osteoporotic persons were perceived as victims of harsh circumstances to one of individual responsibility.
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Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Idoso , Dieta , Feminino , Grupos Focais , Fraturas Ósseas/epidemiologia , Fraturas Ósseas/etiologia , Fraturas Ósseas/prevenção & controle , Humanos , Noruega/epidemiologia , Osteoporose/complicações , Osteoporose/epidemiologia , Osteoporose/prevenção & controle , Fatores de RiscoRESUMO
OBJECTIVES: To explore how women with negative mammography screening results, but who were later diagnosed with interval breast cancer, reacted when they observed breast symptoms that could indicate malignancy in-between screening rounds. DESIGN: Semistructured individual interviews with women who have been diagnosed with breast cancer during mammography screening intervals. SETTING: Two breast diagnostic units covering two counties in Norway. PARTICIPANTS: 26 women diagnosed with interval breast cancer. RESULTS: Women with a screening negative result react in two ways when experiencing a possible symptom of breast cancer. Among 24 women with a self-detected palpable lesion, 14 sought medical advice immediately. Their argument was to dispose of potential cancer as soon as possible. Ten women delayed seeking medical advice, explaining their delay as a result of practical difficulties such as holidays, uncertainty about the symptom, and previous experiences of healthcare services' ability to handle diffuse symptoms. Also, a recent negative mammography scan led some women to assume that the palpable lesion was benign and wait for the next screening round. CONCLUSIONS: Participating in mammography screening may contribute to a postponed reaction to breast cancer symptoms, although most women acted rapidly when detecting a palpable breast lesion. Furthermore, screening participation does not necessarily increase awareness of breast cancer symptoms.
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Interval cancer is cancer detected between screening rounds among screening participants. In the Norwegian Breast Cancer Screening Programme, 19 per 10,000 screened women are diagnosed with interval cancer. We conducted semi-structured interviews with 26 such women. The women interpreted their interval breast cancer in two ways: that mammography can never be completely certain, or as an experience characterized by shock and doubts about the technology and the conduct of the medical experts. Being diagnosed with interval cancer thus influenced their trust in mammography, but not necessarily to the point of creating distrust. The women saw themselves as exceptions in an otherwise beneficial screening programme. Convinced that statistics had shown benefits from mammography screening and knowing others whose malignant tumours had been detected in the programme, the women bracketed their own experiences and continued trusting mammography screening. Facing a potentially lethal disease and a lack of alternatives to mammography screening left the women with few options but to trust the programme in order to maintain hope. In other words, trust may not only be a basis for hope, but also a consequence of it.