Collaboration between Sami and non-Sami formal and family caregivers in rural municipalities

The aim of this study was to explore how caregivers experience collaboration in rural municipalities in northern Norway. We conducted fieldwork with a dementia team in addition to seventeen qualitative in-depth interviews with formal and family caregivers. The caregivers had ethnic Sami and ethnic Norwegian affiliation. The theme ‘negotiating ethnic and ethno-political positions’ was identified through thematic analysis and developed using positioning theory. Ethnicity involves dynamic and situated personal affiliations, and participants negotiate each other's ethnic positions in practice. Negotiations of ethnic positions hamper collaboration between formal and family caregivers, and ethno-political positions reinforce stereotyped ethnic positions. This study contributes to the understanding of and the debate over positions on ethno-cultural collaboration in health care. In practice, participants negotiate the health policy concept of ‘cultural facilitation’, which must be broadened to ensure equal healthcare services.     

Time intervals and patient-level factors in oral cancer diagnostic pathways: An application of the WHO framework in India

BackgroundOral cancer, a leading cancer-site in India, is often detected at advanced stages. We evaluated the time intervals from first symptom to help-seeking and diagnosis among oral cancer patients.MethodologyIn this cross-sectional study, we recruited 226 consecutive oral cancer patients (mean age ( ± SD) 51.9 years ( ± 10.9); 81.9% men; 70.3% advanced stage) registered for diagnosis and treatment, between 2019 and 2021 at a cancer care centre in South India. We used WHO framework and previously standardized tools to record time intervals (appraisal, help-seeking and diagnostic) and baseline characteristics. We utilized multivariable logistic regression models to test the associations between ‘prolonged (i.e., over 1 month) time intervals’) and patient-level factors to estimate odds ratios (ORs) with 95% confidence intervals (CIs).ResultsOver a half of patients presented with prolonged appraisal (60%) and help-seeking intervals (57%), and a third (34%) reported prolonged diagnostic interval. Patients with no formal education, no routine healthcare visits, no self-reported risk factors, and those who did not perceive initial symptoms to be serious were 2–4 times more likely to have prolonged appraisal and help-seeking than the rest. High travel costs and self-decision for visiting healthcare facility prolonged help-seeking. Diagnostic interval was prolonged only among women OR= 2.7 (95% CI: 1.2–6.1)) and in patients whose first doctor’s opinion was ‘nothing to worry’ OR (=7.3 (95% CI: 2.6–20.5)). ‘Correct knowledge of cancer’ shortened appraisal and help-seeking intervals and ‘incorrect knowledge and negative beliefs’ prolonged diagnostic interval.ConclusionOur findings highlight that interventions targeting sociocultural and economic determinants, symptom awareness, sensitizing persons at risk (especially women) and primary care providers might reduce overall time to diagnosis. Further, patients without any known risk factors for oral cancer might be at-risk for prolonged appraisal interval. These might help inform ‘pull’ strategies for cancer control in India and similar settings.     

Incorporating Sustainability into Community-Based Healthcare Practice

There is now irrefutable evidence that climate change and increasing environmental degradation negatively affect population health. Healthcare plays an important role in addressing these emerging environmental challenges, considering its core aim is to protect and promote health. Preliminary research in Victoria, Australia, suggests that healthcare practitioners are endeavouring to factor in environmental concerns into their practice. Health promotion, an integral part of the healthcare system, is considered an area of practice that can support action on sustainability. Based on five qualitative case studies and key stakeholder interviews, this article explores key barriers and facilitators to incorporating sustainability into community-based healthcare practice. The findings demonstrate that despite multiple barriers, including funding and lack of policy direction, health promotion principles and practices can enable action on sustainability.     

Introduction of a collaborative quality improvement program in the French cystic fibrosis network: the PHARE-M initiative

Background

An agreement, signed in 2007 by the 49 French Cystic Fibrosis Centers, included a commitment to participate, within the next 5 years, in a care quality assessment and improvement program (QIP). The objective was to roll out in the French Cystic Fibrosis (CF) care network a QIP adapted from the US program for Accelerating Improvement in Cystic Fibrosis Care developed by The Dartmouth Institute Microsystem Academy (TDIMA) and customized by the US CF Foundation between 2002 and 2013.

Methods

The French national team at the Nantes-Roscoff CF Center of Expertise was trained at TDIMA and visited US CF centers involved in US Learning and Leadership Collaboratives (LLCs). It introduced the PHARE-M QIP in France by transposing the Action Guide and material. A PHARE-M LLC1 including seven centers, underwent two external assessments. Adjustments were made, then a PHARE-M LLC2 was rolled out at seven more centers in two regions. On-site coaching was strengthened. The teams’ satisfaction was assessed and further adjustments were made. In 2014, the program sought recognition as a continuing education program for healthcare professionals.

Results

Ninety-six trainees including 14 patients/parents from the 14 CFCs volunteered to participate, test and adapt the program during LLC1 and LLC2 sessions. Comparison of patient outcomes collected in the Registry report by CF center, reflection on potential best practices, selection by each team of an improvement theme, implementation of improvement actions, and exchanges between teams fostered the adhesion of the teams. The program strengthened quality of care, interdisciplinary functioning and collaboration with patients/parents at the centers. The satisfaction expressed by the teams increased over time. A post-PHARE-M cycle maintains the focus on continuous quality improvement (CQI). In 2015, PHARE-M was recognized as a continuing professional development program in healthcare.

Conclusions

The PHARE-M is a complex intervention in multidisciplinary teams working in a variety of hospital settings. A confluence of factors motivated teams to engage in the program. Involving Patient/Parent in quality improvement (QI) work and developing patient therapeutic education for self-management appeared to be complementary approaches to improve care. Incorporating the program into hospital continuing education insures its sustainability. Transparency of Patient Registry indicators per center published in a brief lapse of time is required to effectively support CQI. The impact of the PHARE-M on patient outcomes after 3 years is the subject of a research program funded by the French Ministry of Health whose results will be available in 2017.

     

Lessons from patient and parent involvement (P&PI) in a quality improvement program in cystic fibrosis care in France

Background

Quality Improvement Programs (QIP) in cystic fibrosis (CF) care have emerged as strategies to reduce variability of care and of patient outcomes among centres facilitating the implementation of Best Practices in all centres. The US CF Foundation developed a Learning and Leadership Collaborative program which was transposed in France in 2011. Patient and parent involvement (P&PI) on the local quality teams (QTs) is one dimension of this complex intervention. The conditions and effects of this involvement needed to be evaluated.

Methods

In all settings, patients and parents were recruited by their centre care team. They were trained to QI method and tools and contributed their own expertise to improve the process of care. This involvement has been analyzed in the frame of the whole process evaluation. Observations and interviews conducted during the course of the first training year explored the motivations of the patients and parents to participate and the vision of the health care teams. A research study was carried out after three years with the patients/parents and the professionals to assess the French QIP’s effectiveness using a questionnaire to report their opinions on various components of the program, including their experience of P&PI. Responses were analyzed in view of identifying consensus and dissensus between the two groups.

Results

At the introduction of the program, P&PI was an opportunity for healthcare providers to reflect on their conceptions of these individuals both as patients and as healthcare system users. Curiosity about the teams’ functioning, the various center organizations and outcomes led patients to overcome their initial barriers to participation. Seventy-six people including 12 patients/parents from the 14 pilot centres responded to the questionnaire after 3 years. Consensus between professionals and patients/parents was high on most items characterizing the performance of the QIP, QT effectiveness and QT functioning. Patients, parents and professionals agreed on the main characteristics of care such as an optimized organization, multidisciplinary care and patient-centredness. Regarding the use of patient electronic records, the use of care guidelines or the organization of support in the patient community, responses were not consensual amongst patients/parents and a source of dissensus between the two groups. All agreed that the French QIP created good conditions for their involvement. In the end, both groups agreed that it was difficult to attribute the paternity of some changes specifically to any member in the team.

Discussion

Perspectives such as an educational framework to develop the skills and behaviors of professionals engaged in collaborative practice with patients and families and large patient experience surveys could be used to capture patients’ experience of care in the improvement work.

Conclusion

Success factors for patient/parent long-term involvement in QIPs have been identified. Answers to questions raised by the stakeholders about the feasibility, efficiency and usefulness of P&PI in this CF QIP could be given but new questions arose about the sustainability of continuous quality improvement over time.

     

Insights into the impact and use of research results in a residential long-term care facility: a case study

Background

Quality improvement collaboratives (QICs) bring together groups of healthcare professionals to work in a structured manner to improve the quality of healthcare delivery within particular domains. We explored which characteristics of the composition, participation, functioning, and organization of these collaboratives related to changes in the healthcare for patients with anxiety disorders, dual diagnosis, or schizophrenia.

Methods

We studied three QICs involving 29 quality improvement (QI) teams representing a number of mental healthcare organizations in the Netherlands. The aims of the three QICs were the implementation of multidisciplinary practice guidelines in the domains of anxiety disorders, dual diagnosis, and schizophrenia, respectively. We used eight performance indicators to assess the impact of the QI teams on self-reported patient outcomes and process of care outcomes for 1,346 patients. The QI team members completed a questionnaire on the characteristics of the composition, participation in a national program, functioning, and organizational context for their teams. It was expected that an association would be found between these team characteristics and the quality of care for patients with anxiety disorders, dual diagnosis, and schizophrenia.

Results

No consistent patterns of association emerged. Theory-based factors did not perform better than practice-based factors. However, QI teams that received support from their management and both active and inspirational team leadership showed better results. Rather surprisingly, a lower average level of education among the team members was associated with better results, although less consistently than the management and leadership characteristics. Team views with regard to the QI goals of the team and attitudes towards multidisciplinary practice guidelines did not correlate with team success.

Conclusions

No general conclusions about the impact of the characteristics of QI teams on the quality of healthcare can be drawn, but support of the management and active, inspirational team leadership appear to be important. Not only patient outcomes but also the performance indicators of monitoring and screening/assessment showed improvement in many but not all of the QI teams with such characteristics. More studies are needed to identify factors associated with the impact of multidisciplinary practice guidelines in mental healthcare.     

Reproductive ‘Surrogacy’ and Parental Licensing

A serious moral weakness of reproductive ‘surrogacy’ is that it can be harmful to the children who are created. This article presents a proposal for mitigating this weakness. Currently, the practice of commercial ‘surrogacy’ operates only in the interests of the adults involved (the gestator and the commissioning individuals who employ her), not in the interests of the child who is created. Whether ‘surrogacy’ is seen as the purchase of a baby, the purchase of parental rights, or the purchase of reproductive labor, all three views share the same significant flaws. They endorse the transfer, for a fee, of the infant from the woman who gestated it to those who commissioned it, but without justifying such a transfer; they fail to demonstrate that the commissioners have any entitlement to the infant, or, for that matter, suitability to be the infant's parents; and they fail to take any notice of the infant's needs, interests, and wellbeing. A mere genetic connection is not enough to establish that the commissioners are entitled to receive the baby or that they are competent to raise it. Their good intentions, however caring, are not enough. Therefore, just as in the practice of adoption, there should be a formal institutionalized system for screening and licensing the prospective social parents, which would make the infant's needs, interests, and wellbeing paramount. I reply to several potential objections to this proposal, including the objection that genetic parents who raise their own child are not screened and licensed.     

Data for improvement and clinical excellence: protocol for an audit with feedback intervention in long-term care

Background

A regional integrated cancer network has implemented a program (educational workshops, reflective and mentoring activities) designed to support the uptake of evidence-informed interprofessional collaborative practices (referred to in this text as EIPCP) within cancer teams. This research project, which relates to the Registered Nurses' Association of Ontario (RNAO) Best Practice Guidelines and other sources of research evidence, represents a unique opportunity to learn more about the factors and processes involved in the translation of evidence-based recommendations into professional practices. The planned study seeks to address context-specific challenges and the concerns of nurses and other stakeholders regarding the uptake of evidence-based recommendations to effectively promote and support interprofessional collaborative practices.

Aim

This study aims to examine the uptake of evidence-based recommendations from best practice guidelines intended to enhance interprofessional collaborative practices within cancer teams.

Design

The planned study constitutes a practical trial, defined as a trial designed to provide comprehensive information that is grounded in real-world healthcare dynamics. An exploratory mixed methods study design will be used. It will involve collecting quantitative data to assess professionals' knowledge and attitudes, as well as practice environment factors associated with effective uptake of evidence-based recommendations. Semi-structured interviews will be conducted concurrently with care providers to gather qualitative data for describing the processes involved in the translation of evidence into action from both the users' (n = 12) and providers' (n = 24) perspectives. The Graham et al. Ottawa Model of Research Use will serve to construct operational definitions of concepts, and to establish the initial coding labels to be used in the thematic analysis of the qualitative data. Quantitative and qualitative results will be merged during interpretation to provide complementary perspectives of interrelated contextual factors that enhance the uptake of EIPCP and changes in professional practices.

Discussion

The information obtained from the study will produce new knowledge on the interventions and sources of support most conducive to the uptake of evidence and building of capacity to sustain new interprofessional collaborative practice patterns. It will provide new information on strategies for overcoming barriers to evidence-informed interventions. The findings will also pinpoint critical determinants of 'what works and why' taking into account the interplay between evidence, operational, relational micro-processes of care, uniqueness of patients' needs and preferences, and the local context.     

Relationships among multiple aspects of agriculture's environmental impact and productivity: a meta‐analysis to guide sustainable agriculture

Given the pressures on land to produce ever more food, doing it ‘sustainably’ is growing in importance. However, ‘sustainable agriculture’ is complex to define, not least because agriculture impacts in many different ways and it is not clear how different aspects of sustainability may be in synergy or trade off against each other. We conducted a meta‐analysis to assess the relationships between multiple measures of sustainability using novel analytical methods, based around defining the efficiency frontier in the relationship between variables, as well as using correlation analysis. We define 20 grouped variables of agriculture's impact (e.g. on soil, greenhouse gas, water, biodiversity) and find evidence of both strong positive and negative correlations between them. Analysis based on the efficiency frontier suggests that trade‐offs can be ‘softened’ by exploiting the natural between‐study variation that arises from a combination of farming best practice and context. Nonetheless, the literature provides strong evidence of the relationship between yields and the negative externalities created by farming across a range of measures.     

God,Fatherland, Home: revealing the dark side of our anthropological virtue

The article uses ethnographic research on right-wing anti-government movements in Bolivia conducted at the height of social conflict and cultural violence in 2008 and 2009 to reflect more generally on the relationship between anthropological research, ethical commitment, and the politics of knowledge. The article first describes the relevant epistemological and political contexts in which engaged anthropology emerged as an important disciplinary current. It then goes on to consider how and why the author's research on right-wing political practice in Bolivia diverged from the disciplinary expectations of engaged anthropology. After reflecting on the implications of this shift, the article concludes by arguing for a methodological recalibration that allows anthropologists to take seriously the ideologies and cultural logics of contemporary right-wing mobilization, particularly social and political movements that are animated by what Edmund Burke described as ‘just prejudice’.     

‘They should hire the one with the best score’: White sensitivity to qualification differences in affirmative action hiring decisions

This paper uses innovative survey questions from the 1998 Detroit Area Study to examine how whites communicate their views about racial matters across three affirmative action hiring scenarios. Results suggest that most whites prefer explanations for not hiring blacks based on the abstract and decontextualized application of the principles of liberalism. Justifications that were initially offered emphasizing qualification thresholds, broad criteria, and contextual concerns, usually in support of hiring the black applicant, were largely withdrawn when the scenario was changed from one with equal scores to one with scores slightly favouring the white applicant. Concrete and contextualized concerns about workforce homogeneity and the slightness of score differences were raised in a conciliatory manner when scores were equal, but then were seldom maintained when scores favoured the white candidate. Whites also more readily voiced opposition when the reason for hire was changed from ‘diversity’ to ‘make up for past discrimination’, offering ‘reasonable’ responses about ‘the past is the past’ that don't deny concrete historical events, but dismiss their connection to today's racial order. Taken together, the evidence suggests that the language of universalism and minimization of racism allow most whites to communicate their views about affirmative action using rhetorical strategies that seem reasonable and moral.     

How was teleology eliminated in early molecular biology?

This paper approaches the issue of the status of teleological reasoning in contemporary biology through a historical examination of events of the 1930s that surrounded Niels Bohr’s efforts to introduce ‘complementarity’ into biological discussions. The paper examines responses of three theoretical physicists who engaged boundary questions between the biological and physical sciences in this period in response to Bohr—Ernst Pascual Jordan (1902–80), Erwin Schrödinger (1887–1961), and Max Delbrück (1906–81). It is claimed that none of these physicists sufficiently understood Bohr’s ‘critical’ teleological arguments, which are traced to the lineage of Kant and Harald Høffding and their respective resolutions of the Antinomy of Teleological Judgment. The positions of these four historical actors are discussed in terms of Ernst Mayr’s distinction of ‘teleological,’ ‘teleomatic,’ and ‘teleonomic’ explanations. A return to some of the views articulated by Bohr, and behind him, to Høffding and Kant, is claimed to provide a framework for reintroducing a ‘critical’ teleology into biological discussions.     

“My appointment received the sanction of the Admiralty”: Why Charles Darwin really was the naturalist on HMS Beagle

For decades historians of science and science writers in general have maintained that Charles Darwin was not the ‘naturalist’ or ‘official naturalist’ during the 1831–1836 surveying voyage of HMS Beagle but instead Captain Robert FitzRoy’s ‘companion’, ‘gentleman companion’ or ‘dining companion’. That is, Darwin was primarily the captain’s social companion and only secondarily and unofficially naturalist. Instead, it is usually maintained, the ship’s surgeon Robert McCormick was the official naturalist because this was the default or official practice at the time. Although these views have been repeated in countless accounts of Darwin’s life, this essay aims to show that they are incorrect.     

Sustainable goat production—Some global perspectives

The multi-dimensional nature of ‘sustainability’ including survival, resilience and efficiency is described as are the environmental, economic and social factors that underpin sustainability. Some of the current global trends and forces of change that impinge on goat production in the 21st century are also considered. The characteristics of some of the main goat systems and the people who keep them are described and the impact of some global trends (climate change, rising prices of food and fuel, environmental degradation, genetic erosion, dietary and lifestyle changes, social inequality and global insecurity) on the sustainability of goat production are considered. A ‘sustainability scorecard’ is developed as a tool to assess the ability of goat production systems to survive current trends and future shocks. Some case studies are presented from Africa, Afghanistan and the UK, including the pastoral systems of East Africa, emerging smallholder dairy systems in Africa, cashmere goat production in Afghanistan and a highly intensive niche dairy enterprise in the UK. The sustainability scorecard is applied to assess each system. Finally, conclusions are drawn about how to make goat systems more sustainable and resilient to the challenges they currently face and how goat keepers need to constantly adapt to changing circumstances in order to survive.     

The virtual eco-costs ‘99 A single LCA-based indicator for sustainability and the eco-costs-value ratio (EVR) model for economic allocation

In literature, many models (qualitatively as well as quantitatively) can be found to cope with the problem of communicating results of LCA analyses with decision takers. In a previous article of this Journal, an LCA-based single indicator for emissions is proposed: the ‘virtual pollution prevention costs ‘99’ (Vogtländer et al. 2000a). In this article, a single LCA-based indicator for sustainability is proposed. It builds on the virtual pollution prevention costs ‘99 for emissions, and adds the other two main aspects of sustainability: material depletion and energy consumption. This single indicator, the ‘virtual eco-costs ‘99’, is the sum of the marginal prevention costs of:

Material depletion, applying ‘material depletion costs’, to be reduced by recycling

Energy consumption, applying ‘eco-costs of energy’ being the price of renewable energy

Toxic emissions, applying the ‘virtual pollution prevention costs ‘99’

The calculation model includes ‘direct’ as well as ‘indirect’ environmental impacts. The main groups of ‘indirect’ components in the life cycle of products and services are:

Labour (the environmental impacts of office heating, lighting, computers, commuting, etc.)

production assets (equipment, buildings, transport vehicles, etc.)

To overcome allocation problems of the indirect components of complex product-service systems, a methodology of economic allocation has been developed, based on the so called Eco-costs/ Value Ratio (EVR) model. This EVR calculation model appears to be a practical and powerful tool to assess the sustainability of a product, a service, or a product-service combination.     

Community engagement in global health research that advances health equity

Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and middle‐income country (LMIC) community members in global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs.     

ATTITUDES TOWARDS EUTHANASIA AND ASSISTED SUICIDE: A COMPARISON BETWEEN PSYCHIATRISTS AND OTHER PHYSICIANS

Euthanasia and physician assisted‐suicide are terms used to describe the process in which a doctor of a sick or disabled individual engages in an activity which directly or indirectly leads to their death. This behavior is engaged by the healthcare provider based on their humanistic desire to end suffering and pain. The psychiatrist's involvement may be requested in several distinct situations including evaluation of patient capacity when an appeal for euthanasia is requested on grounds of terminal somatic illness or when the patient is requesting euthanasia due to mental suffering. We compare attitudes of 49 psychiatrists towards euthanasia and assisted suicide with a group of 54 other physicians by means of a questionnaire describing different patients, who either requested physician‐assisted suicide or in whom euthanasia as a treatment option was considered, followed by a set of questions relating to euthanasia implementation. When controlled for religious practice, psychiatrists expressed more conservative views regarding euthanasia than did physicians from other medical specialties. Similarly female physicians and orthodox physicians indicated more conservative views. Differences may be due to factors inherent in subspecialty education. We suggest that in light of the unique complexity and context of patient euthanasia requests, based on their training and professional expertise psychiatrists are well suited to take a prominent role in evaluating such requests to die and making a decision as to the relative importance of competing variables.     

Empirical research in clinical ethics: The ‘committed researcher’ approach

After the ‘empirical turn’ in bioethics, few specific approaches have been developed for doing clinical ethics research in close connection with clinical decision-making on a daily basis. In this paper we describe the ‘committed researcher’ approach to research in clinical ethics that we have developed over the years. After comparing it to two similar research methodological approaches, the ‘embedded researcher’ and ‘deliberative engagement’, we highlight its main features: it is patient-oriented, it is implemented by collegial and multidisciplinary teams, it uses an ethical grid to build the interview guide, and it is geared towards bringing the results to bear on the public debate surrounding the issue at stake. Finally, we position our methodological approach with respect to the ‘is vs. ought’ distinction. We argue that our ‘commitment researcher’ approach to clinical ethics research takes concerned people’s life-building values as the main data, and compares them to the larger normative framework underlying the medical practice at stake.